Wednesday, November 14, 2018

Sew Chaotically! ~ Rose, a floral beauty!!! (Oh, and M7349.)


I first made this dress in pink here.  This pattern is a dream to sew and excellent for Rosie.  It fits her body, style and life perfectly.  She picked this Telio Brazil Stretch ITY knit from fabric.com and has been eagerly waiting for me to sew it up.  I made the first dress in a fuchsia stretch poly/rayon jersey from Mood as a test case.  She loved this fabric so much I didn't want to ruin it!!!  In fact, I was a little worried about working with it given its slippery feel and lovely drape.  However, it was actually much easier to work with than the jersey with no rolling or slipping when pinning or under the machine and easier to wear with no cling!  With the large print and princess seaming in the dress, I didn't worry about pattern matching per se, but focused on flow of color.  I carefully chose the placement of one flower in the front and went from there, working to keep the yellow and orange pansies in general rows around the skirt ~ and I think I did!!!  BUT!!  I am most psyched about the neck band!  Not only does it lay perfectly, check out that color placement.  Ha!!  Can you tell I am inordinately pleased with myself???  Mostly, I am happy because Roo LOVES it!!



There's lots of styling potential from boots to sandals, sweaters to jackets, or on its own!

So pretty!!  The dress, too.  Love my girl.  Sew chaotically!!! - les

Tuesday, November 13, 2018

Sew Chaotically! - Cute polka dotted M7093 top for Roo along with CAPOX GBD's!!!!


It's a little late in the season for this top, but with a sweater or jacket I think Roo can start to get a bit of wear out of it.  I've sewn up this pattern several times.  You can check out posts here and here.  It tolerates almost any material, can be made with slits (as it is here) or pockets, long or short sleeves, and goes together easy peasy!!!  Isn't she the cutest????



And now.....THE GBD's!!!  (The Good, the Bad, and the Deets - re me and CAPOX!)

  • Ready for the shocker - CAPOX sucks!!!  
  • Effects are cumulative...no surprise there.  Data on these drugs and common sense (when you review the pharmacokinetics) show that drug levels rise as you go along and side effects can get progressively worse.  I am here to tell you that that is correct!
  • I've had a difficult time with abdominal pain and cramping with diarrhea since the 3rd week of the last cycle.  So much so that we had to call and adjust the capecitibine from 3 tabs twice daily that I took for the first two weeks, to 2 tabs in the am and 3 in the evening last week.
  • Despite adding levsin to my control meds of immodium, marinol, and pepcid - pain and excessive stools continued. When we went in for labs yesterday, we were told to decrease the drug further to 1 tab twice a day.  We will see how that goes.
  • NOW.  If you are taking poison to kill cancer, what happens if you take less poison than is recommended?  Will you still kill your cancer?  Well, my Medical Meerkat is on it, finding this:  Oncologic outcome after cessation or dose reduction of capecitabine in patients with colon cancer.  Yun, Kim, Son, et al.  J Korean Soc Coloprotocol.  March 2010.  This article, dealing with colon cancer...NOT my diagnosis exactly...reports the following:
173 folks with Stage II or III surgically resected colon cancer, were given capecitibine (ALONE) as an adjuvant treatment at a dosage of 1,250 mg/m squared twice a day for 14 days, off for 7, and repeat for 8 cycles.  (For reference I was taking 1,000 mg/m squared when I was taking 3 tabs twice a day.  Though as I've mentioned before, calculating mg/m squared is difficult when you are thin or heavy.  Additionally, I am also taking oxaliplatin, don't have colon cancer per se, and am not Korean, but what 'cha gonna do???!!!)  Of the 173 peeps, 129 had side effects.  Hand/foot syndrome was most common with about 66% experiencing it.  46 patients had to stop or decrease the med.  The 42 of the 46 broke down like this:  39 had hand/foot syndrome, 12 had nausea, 8 had diarrhea, 7 had abnormal blood test results...all to the extent that a dose adjustment was required.  

Patients who had a dosage reduction (n = 35) vs those who did not (n = 138) showed no significant difference in relapse rates. The 3 year disease free survival rate was 90.5% for those with no reduction and 82.4% for those who required one, with authors noting that "this difference was not statistically significant".  When you contrast this with folks who had to stop the med completely - 155 peeps completed all 8 cycles of the med, but 18 had to stop - relapse between the two groups were 10.3% and 27.8% respectively.  The 3 year disease free survival rates of the two groups were 90.7% and 70.9% respectively.  Both of these data points WERE statistically significant.

In the end, those who took all the med did best, those who had to decrease the quantity of the med did less well in hard numbers though they did not compute into a statistical difference, and those who had to stop the medication did less well in both recurrence and disease free survival.

What does all that mean for me?  No real idea.  I do not have the disease these peeps had.  I am taking capecitibine for half the rounds they were prescribed.  I am taking capecitibine WITH oxaliplatin - which may (actually probably) compounds my abdominal problems but may improve my response rate.  And, incidentally, colon cancer (not that I can apply this data to me either!!!) appears at different rates when you look across the globe with decided differences when examined by race and geography.  You can't find this data on folks like me!!!  Other than in this space.  Rattie de pie solo aqui!!
  • Looking back to last round, I was able to start exercising (no marathons here....just 10-15 minutes on the elliptical with a little core work) on the Friday after my Monday infusion.  I had to stop doing anything around Wed of my week off and haven't been able to do anything since!!!!
  • My nausea and cramping have been worse with movement.  I think I may be feeling a bit better today.  Yesterday was my first day of 1 tab twice daily...so maybe this regimen will be more tolerable.
  • I have been super tired.  That's probably more due to the oxaliplatin.  My body aches.  My knees hurt.  I feel slightly better today.  
  • My hemoglobin and white counts are hanging steady per lab work.
  • I now weigh 126 pounds...down from 128 which was down from my usual 135-137.
  • I am developing brown rough patches on my skin...so that is fab!
  • My paresthesias have been much worse this time in my hands and feet, tongue occasionally, in old IV sites on my arms.  Lips still weird.  Hiccoughs gone.  
  • My feet burn a fair amount of the time these days.
  • I had a good visit with Rose and Jamie.
  • I finished my throw!!  Take that jingy jangy fingers.  Pics to come.
  • Finished Roo's floral dress.  It is so pretty on her!  Will post soon!
  • I am still enjoying watching my blue birds eat B's meal worms.  Today a wood thrush briefly joined them!!!  Such excitement!
  • I think I've read every sewing blog on the planet.  You think I'm kidding.  No.  Google translate has been in full swing!  And when I say read...I mean - Every.  Flippin.  Post.  I've learned some nifty things and made this observation:  Sewists are an amazing group, with real heart, personal integrity and support for diversity, fairness, artisans, thoughtful consumerism, human rights, peace, kindness, our environment, and each other.
  • In sad contrast to another group of which I am a part ~ this morning it struck me and B (as we were observing the changing lesions on my hands and arms) that NONE of my caretakers -  nurses, NP's or docs - have done a complete physical on me since this adventure began in August.  Not my surgeon (unless it was done while I was under), not any of my oncology peeps.  A couple have listened to my lungs, heart or abdomen...but THAT IS IT!!!  Not one has looked over my skin.  Melanoma patient here, Y'all!!!  Meds you are giving me can cause a rash, so you ought to know what rashes I had at the start and then watch for any rashes I may develop!!  Not one has looked in my mouth other than anesthesia (they needed to intubate, so at least they took a peep) and that is significant.  My onc is fully aware of the terrible oral lesions I developed while on Nivo as well as a more recent lesion that she actually sent me to ENT for, then determined to be a scar.  AND...the meds I am currently being given can cause oral lesions as well.  Not one has tested my reflexes.  Now, I don't do that on every visit for my patients either.  HOWEVER, if I am taking care of someone with possible nerve issues of any sort (neuropathies definitely qualify!!!!) I absolutely check them!  They are clearly part of follow-up per standard of care protocols when you place a person on this regimen.  Oh, well.  Another reason it is a good thing that I have a Medical Meerkat.
Just keep'n it a hundred!!  Much love, les

Monday, November 12, 2018

Honoring MY vets!!!!!


Our country, our rights, our peace, our prosperity - the very life we are fortunate to lead in the United States of America - we have only through the hard work, dedication, strength, willingness to serve, and even fall, of our military personnel past and present.  I am personally blessed to have three of these amazing veterans in my family!!!!

My dear brother-in-love, Frankie!!!  Tours in so many places.  An amazing career, from which he recently retired, in the Air Force.  (Yep!!  Ruthie made that beautiful dress with fabric Brent and I got her in Spain.  Y'all know I have to share deets like that!!!)


And Ruthie herself!!!  Not only did she serve us all, as a spouse to a husband who was career military - raising children, holding down jobs, helping her peeps in all kinds of ways - often as a "single mom" when Frank was deployed, served in the Marine Corp herself!!! 
 My sister Carla is also a proud Marine, who among other things played a significant role in keeping planes, pilots, and supplies flying to the troops who needed them in the first Gulf War.  (This pic is from a conference in Nashville where she was speaking in her current role as investigator for the ADL that Ruthie and I attended on our way to Tampa for more Nivo/Opdivo a few years ago!!)


Thanks is not enough.  Still, I offer it sincerely to MY vets, all those who went before them, and those who continue to serve.  No, I will not forget the service and sacrifice our veterans so generously provide to make our country and the world a better place.  Happy Veterans Day. - c

Saturday, November 10, 2018

SRS and immunotherapy in melanoma brain mets as well as other organs


I have been yelling about the benefits of radiation COMBINED with immunotherapy for soooooooo long!!!  Here are a ZILLION posts!!!!!!!!!!!!!!!!!

Here is a nice review from June of this year:  Radiation therapy and PD-1/PD-L1 blockade: the clinical development of an evolving anticancer combination

While most of the initial data regarding combining radiation WITH immunotherapy started with the good results achieved in folks with brain mets....we are learning more and more about the benefit of the combo in other areas of the body.  Here are two reports:

Efficacy of combined hypo-fractionated radiotherapy and anti-PD-1 monotherapy in difficult-to-treat advanced melanoma patients.  Roger, Finet, Boru, et al. Oncoimmunology. 2018 Mar 13.

Information on the role of radiotherapy in anti-PD-1 monoclonal antibody-treated melanoma patients is limited. We report on a prospective cohort of advanced melanoma patients treated simultaneously with radiotherapy and anti-PD-1 therapy between 01/01/15 and 30/06/16. Tumor evaluations (RECIST 1.1) were performed every 3 months on radiated and non-radiated lesions. Twenty-five advanced melanoma patients (64% AJCC stage IV M1c, 64% on second-line treatment or more, 60% with elevated LDH serum levels) were included. Radiotherapy was performed early (median: 24 days) after the first anti-PD-1 dose in 15 patients with rapidly progressing symptomatic lesion(s) or later (median: 5.4 months) in 10 patients with progressive disease (PD) despite PD-1 blockade. Radiotherapy was limited to one organ in 24 patients and consisted mainly of hypo-fractioned radiotherapy (median dose 26 Gy in 3-5 fractions, 17 patients) or brain radiosurgery (5 patients). Median follow-up after first anti-PD-1 dose was 16.9 m (range 2.7-27.4), with 44% of patients alive at last follow-up. For radiated lesions, rates of complete (CR), partial (PR) responses, stable disease (SD) or PD were 24%, 12%, 24%, and 32%, respectively. For non-radiated lesions, rates of CR, PR, SD, and PD were 20%, 19%, 12%, and 40%, respectively. Responses achieved after radiotherapy for radiated and non-radiated areas were correlated suggesting an abscopal effect. Five patients with CR remained disease-free after discontinuation of anti-PD-1 for a median of 9.5 months. No unusual adverse event was recorded. Hypo-fractionated radiotherapy may enhance efficacy of anti-PD1 therapy in difficult-to-treat patients.

Combined radiotherapy with nivolumab for extracranial metastatic malignant melanoma. Komatsu, Konishi, Aoshima, et al. Jpn J Radiol. 2018 Sep 11.

We retrospectively evaluated the tumor regression after radiotherapy in combination with the immune checkpoint inhibitor nivolumab for metastatic melanoma.  We evaluated the extracranial metastatic melanoma lesions to which concomitant radiotherapy with nivolumab was administered from June 2015 to February 2017. Tumor volume and maximum diameter were measured at the time of pre-radiotherapy and best response, and the tumor reduction rate was assessed in two ways that our hospital adopts: tumor volume and diameter.

Seven lesions in five patients were evaluated. The median time from the start of nivolumab treatment to the start of radiotherapy was 5 months (range 0-22 months). The objective response rate was 85.7% in the evaluation by tumor volume and 42.9% by maximum diameter of the tumor. The objective complete response rate was 28.6% in evaluation by tumor volume and 14.3% by maximum dia. The 1-year tumor control rate was 62.5%. The 1- and 2-year overall survival rate after nivolumab treatment were 75% and 50%, respectively. Two patients who obtained a complete response had presented with vitiligo.

The combination of radiotherapy and nivolumab treatment produced favorable responses. Vitiligo may be correlated with a good response to concomitant radiotherapy with nivolumab.

Good to know.  Immunotherapy WITH radiotherapy WORKS in the brain and body.  Here's one more report confirming the benefit of CONCURRENT administration...

Concurrent versus non-concurrent immune checkpoint inhibition with stereotactic radiosurgery for metastatic brain disease: a systematic review and meta-analysis.  Lu, Goyal, Rovin, et al. J Neurooncol. 2018 Nov 3.

Immune checkpoint inhibition (ICI) is an emerging immunotherapy for metastatic brain disease (MBD). Current management options include stereotactic radiosurgery (SRS), which has been shown to confer prognostic benefit in combination with ICI. However, the effect, if any, of ICI timing on this benefit is currently unclear. The aim of this study was to evaluate the effect of concurrent ICI with SRS on survival outcomes in MBD compared to non-concurrent ICI administered before or after SRS.
Searches of 7 electronic databases from inception to April 2018 were conducted following the appropriate guidelines. 1210 articles were identified for screening. Kaplan Meier estimation of 12-month overall survival (OS), local progression free survival (LPFS) and distant progression free survival (DPFS) were pooled as odd ratios (ORs) and analyzed using the random effects model.  A total of 8 retrospective observational cohort studies satisfied selection criteria.

Compared to non-concurrent ICI, concurrent ICI with SRS conferred a significant 12-month OS benefit, and comparable 12-month LPFS and DPFS. These significances were reflected in the subgroup of melanoma metastases.

Based on the trends of our findings, there appears to exist an optimal time window around SRS of which ICI may confer the most survival benefit. However, current literature is limited by a number of clinical parameters requiring further delineation which limits the certainty of these findings. Larger, prospective, and randomized studies will assist in identifying the time period for which ICI can provide the best outcome in MBD managed with SRS.  

Since ratties put their lives on the line and taught us the benefits of radiation combined with immunotherapy WITHOUT increased side effects (Here's one more report:  CONCURRENT radiation and immunotherapy for brain mets is BEST!!!! (yes, AGAIN!!!)  )....that's what docs are doing, right??????

Stereotactic radiosurgery and immunotherapy in melanoma brain metastases: Patterns of care and treatment outcomes.  Gabani, Fishcher-Valuck, Johanns, et al.
Radiother Oncol. 2018 Jun 27.

Preclinical studies have suggested that radiation therapy (RT) enhances antitumor immune response and can act synergistically when administered with immunotherapy. However, this effect in melanoma brain metastasis is not well studied. We aim to explore the clinical effect of combining RT and immunotherapy in patients with melanoma brain metastasis (MBM).

Patients with MBM between 2011 and 2013 were obtained from the National Cancer Database. Patients who did not have identifiable sites of metastasis and who did not receive RT for the treatment of their MBM were excluded. Patients were separated into cohorts that received immunotherapy versus patients who did not. 

total of 1104 patients were identified: 912 received RT alone and 192 received RT plus immunotherapy. The median follow-up time was 6.4 (0.1-56.8) months. Patients with extracranial disease (OR 1.603), and patients receiving SRS (OR 1.955) as compared to WBRT, had a higher likelihood of being treated with immunotherapy. The utilization of immunotherapy had nearly doubled between 2011 and 2013 (12.9-22.8%). On multivariable analysis, factors associated with superior OS were younger age, lower medical comorbidities, lack of extracranial disease, and treatment with immunotherapy and SRS. The median OS was 11.1 (8.9-13.4) months in RT plus immunotherapy vs. 6.2 (5.6-6.8) months in RT alone, which remained significant after propensity score matching.  

An increase in trend for the use of immunotherapy was noted, however, an overwhelming majority of the patients with this disease are still treated without immunotherapy. Addition of immunotherapy to RT is associated with improved OS in MBM. Given the selection biases that are inherent in this analysis, prospective trials investigating the combination of RT, especially SRS and immunotherapy are warranted.

Despite overwhelming proof that radiotherapy works best WITH immunotherapy and "is associated with improved Overall Survival in Melanoma Brain Mets", these authors note, "....an overwhelming majority of patients with this disease are still treated without immunotherapy."

WHAT THE HELL?????  WHY??????????????????????????????????

Yep. We know that even when anti-PD-1 is given alone, it works in the brain....  And I've been yelling about this for a while:  ASCO 2018 - Survival of folks having melanoma brain mets with immunotherapy
Now this:

Long-Term Survival of Patients With Melanoma With Active Brain Metastases Treated With Pembrolizumab on a Phase II Trial.  Kluger, Chiang, Mahagan, et al.J Clin Oncol. 2018 Nov 8.

Pembrolizumab is active in melanoma, but activity in patients with untreated brain metastasis is less established. We present long-term follow-up of pembrolizumab-treated patients with new or progressing brain metastases treated on a phase II clinical trial.  We enrolled 23 patients with melanoma with one or more asymptomatic, untreated 5- to 20-mm brain metastasis not requiring corticosteroids; 70% of patients had prior systemic therapy. Pembrolizumab was administered for up to 24 months. Brain metastasis response, the primary end point, was assessed by modified Response Evaluation Criteria in Solid Tumors (RECIST). Pretreatment tumors were analyzed for T-cell infiltrate and programmed death ligand 1.  Six patients (26%) had a brain metastasis response. Eight patients (35%) did not reach a protocol evaluation scan and were unevaluable for brain metastasis response as a result of progression or need for radiation. Brain metastasis and systemic responses were concordant, with all ongoing at 24 months. The median progression-free and overall survival times were 2 and 17 months, respectively. Eleven patients (48%) were alive at 24 months. This included three unevaluable patients. One of these three patients had hemorrhaged, and two had symptoms from perilesional edema requiring radiosurgery, but all three patients remained on commercial pembrolizumab more than 24 months later. None of the 24-month survivors received subsequent BRAF inhibitors. Neurologic adverse events occurred in 65% of patients; all adverse events but one were grade 1 or 2. Three patients had seizures, which were treated with anticonvulsants. Most responders had higher pretreatment tumor CD8 cell density and programmed death ligand 1 expression, whereas all nonresponders did not.  Pembrolizumab is active in melanoma brain metastases with acceptable toxicity and durable responses. Multidisciplinary care is required to optimally manage patients with brain metastases, including consideration of radiation to large or symptomatic lesions, which were excluded in this trial. Two-year survival was similar to patients without brain metastasis treated with anti-programmed cell death 1 agents. Concordant brain and extracerebral responses support use of pembrolizumab to treat small, asymptomatic brain metastases.

While this report confirms, again, that anti-PD-1 alone works in the brain, if my mets were treatable through radiotherapy....I would still avail myself of the COMBO!!!  Radiotherapy AND immunotherapy!!!

Then there are the abscopal effects (The situation in which tumors that were NOT irradiated actually respond, shrink, and disappear when distant lesions are treated!!!) that are possible with radiation.  Here's a review: Abscopal responses

Time to abandon single-site irradiation for inducing abscopal effects.  BrooksChang.  Nat Rev Clin Oncol. 2018 Nov 6.  

Considerable interest is being directed toward combining immune-checkpoint inhibition (ICI) with radiotherapy to improve response rates to ICI, which have been disappointingly low at around 15-30% among patients with advanced-stage cancers other than melanoma. Since a case report published in 2012, in which authors described the resolution of metastatic disease after irradiation of a single lesion in a patient who had been receiving ICI, hundreds of clinical trials have been launched with the aim of testing the safety and/or efficacy of radiotherapy in combination with immunotherapy, nearly all of which use this single-site irradiation, or 'abscopal', approach. However, emerging preclinical and clinical evidence suggests that this approach likely produces suboptimal results. In this Perspective, we describe this evidence and provide a biological rationale supporting the abandonment of the single-site abscopal approach. We instead advocate exploring comprehensive irradiation of multiple/all lesions in order to enhance the likelihood of obtaining meaningful clinical outcomes - if such a clinical synergy between radiation and ICI does exist - before the failure of the current, single-site approach leads to the potential premature and inappropriate abandonment of radiotherapy in combination with ICI altogether.

Hmmm....  Makes sense to me.  If one irradiated site might produce an abscopal response, it seems that a couple could do better. 

Yep.  Immunotherapy works in the brain.  Yep.  Immunotherapy COMBINED with radiation is a good thing for melanoma patients.  There you go.  Again. - c

Friday, November 9, 2018

Tu' no eres mi jefe! CAPOX, round 2, day 5!!!


Some things are lost in translation.  Others become remarkably clear.  Working in a multi-lingual, multi-cultural environment in the Southern United States is fabulous and clarifying!!  It brings out the best in us and our country.  Commonalities, rather than differences, are the order of the day.  Parenting, love, food, life - are shared.  Everyone grows.  Everyone benefits.  It's a shame some of our leaders have not had these amazing experiences ~ or are unwilling to learn from them.  At any rate....

"Tu' no eres mi jefe!", is a refrain not infrequently heard followed by laughter in my office.  In English, it literally translates to:  "You are not the boss of me!!!"   In southern parlance however, that last ACTUALLY means:  "You can't tell me what to do!"

Bosses.  Bosses are critical in our lives, jobs, and country.  They can be the mentors, the leaders, we forever remember as critical to the development of our skills, strengths, and abilities.  They can also be a living nightmare, legitimately placing our happiness, security, and success at serious risk.  There are inhuman "bosses".  Fires, floods, cancer, accidents.  Hard to control.  Hard to overcome.  Up sides - none.  Still.  Zillions of peeps, surmount these and so many other extraneous horrors every day  ~ LIKE a BOSS!!!!  Interestingly, a pattern, the template sewists use in making garments, is referred to as a boss in French!!!  Further, sewists embrace Pattern Hacking!!!!  We take the BOSS to task!  Tu' no eres mi jefe!!!  We will widen, trim, dart, lengthen, shorten, ruffle, straighten, embellish, refine - you name it - ANY boss!!  We bend the boss to OUR will.  No boss will tell us what to do without gaining our respect and enthusiasm.

I have always believed I could create my own destiny.  I never thought I was better than anyone else.  But.  I figured if someone else out there could do this thing...  Then I could too.  I may not do it perfectly.  I may not like it.  But, I could do it.  Lord knows, despite being blessed with some of the best, I have certainly had plenty of run-ins with the BOSS!  Human, inhuman, AND as a sewing pattern!  Cancer X2!!!  And almost more devastating - cancer TREATMENT!  Do I need to rethink my ability to control my own life??  Maybe.  But I am more inclined to think that how I deal with the BOSSES I am forced to face IS how I create my destiny.

This week has been rather horrible, though not unexpected, given what we learned last round.  Eating doughnuts ended quickly.  Abruptly replaced by nausea, cramping and diarrhea.  We finally called the oncologist's office yesterday and decreased the capecitibine to 2 tablets in the am and 3 in the evening.  We'll see how that goes...combined with the [now] usual players of pepcid, immodium, marinol and levsin.  Neuropathies have been worse this round.  They started sooner during the infusion of the oxaliplatin and have been more complete and intense.  They've incorporated more of my hands, arms and feet, rather than just sticking to my fingers and toes.  My lips have been weird and draw into a pucker without my will.  I am worn out and my body aches...despite having done NOTHING but sit for 5 days!!! Still....

PERO, no eres mi jefe, CAPOX!  You think I can't crochet? 

Yep.  This is where I was Tuesday.  One square done.  One in development.
As of last night, the second square completed and attached to the existing one!
And while I'm sure Bentie will have much better pics...

...I thought you might like to peer out the window as do.  Here are three of the seven bluebirds who have been enjoying B's meal worm buffet!!!
Yes, melanoma, nivo, GCC, and now CAPOX has stolen much.  Yes, I am miserable.  I look and feel like crap.  I only hope any extraneous adenocarcinoma ex-goblet cells floating about look much worse!!! Still...  Tu' no eres mi jefe, CAPOX!  Tu' no eres mi jefe! - love, les

Wednesday, November 7, 2018

CAPOX, me, random factoids, and the GBD's!!!!


Given my current mood, tummy issues, tingly/misbehaving fingers, and other zombie-fying side effects of my many drugs - RANDOM!!! - may be the prevailing theme in this post...but here we go!

To start.  If you are over 50, actually if you are a human of any age or gender, check this out.  A bit of fashion advice I can get behind!  What not to wear after 50, by Michelle Combs, June 29, 2018

She notes, "You are over 50 for f%&k’s sake. Wear whatever you want. If you’ve made it to 50 and still need to consult articles on how to dress appropriately then you are so missing out on one of the best things about being over 50. One of the best things about getting older is realizing that we don’t have to spend our energy worrying what other people think and we get to be comfortable in our own skin with our own freak flags."  And recommends that we pass on wearing:  "The weight of the world.  Shame and regret.  Rose colored glasses.  Stiff upper lip.  Too many hats.  Resting bitch face. Hahahahaha. Just kidding. Wear that one all you want. Although, it wouldn’t hurt if every once in a while, you had a welcoming and kind look on your face. At least that’s what I hear from other people."

{Maybe that was what was up with my nurse!!  Resting bitch face!!!  And to be honest, I may need to watch wearing my "stiff upper lip" too often.}

In that vein, there is going to be a new label to something that I hope has been ongoing in this space since its origin...TRUTH!!  Unvarnished truth.  Delivered not as a whine or a whimper, not as a contest for whose situation sucks the most or shines the brightest, but as information for those in need.  Shared realness between dear ones, combined with the humor required to face it!!!!  These 'TRUTHS' may range large in topic and frivolity.
But, I will be Keep'n it💯!!!  Ready????

The GOOD, the BAD, and the DEETS!!!!  The GBD's!!!!!!!!!!!!!!!

The GOOD:

  • Before starting round 2, B took me on a Fall Tour of our neighborhood and yard!!!


It's fall, y'all!!


My ever watchful Meerkat was not thrilled that I walked up a little hill!!!  
Summer is still trying to....
....hang on for just a minute more!!!

A strange plant whose name I do not know that I grew up with.  Rooted there from an old south Alabama home place, as I recall.  Happy in its mountain home for the past 20 years.  Attracting zillions of hummingbirds in a single season!!!  Right, Ruthie????  Any intel on this one, Connie or Mary Anne????
This plant, which I call a Rose of Sharon, has a similar origin.  Strangely, its flowers may be white or pink...on the same plant!!!




Happy House, Heather!!!  So happy with how this turned out!!!

  • Since cutting things takes more focus and brain power on my part than most sewing does...
....I cut all the pretty things before embarking on treatment round 2!!!  Sew excited!!!
  • We have had fun watching a flock of blue birds, that I like to think are the babies that hatched from a bird house hung from the porch this spring, return to the area to snack off meal worms (YUCK!!!) that B puts out for them.  
  • Despite some nausea in the night, handled successfully with Marinol, I have had no emesis!  Ate tea, toast, and an egg for breakfast.  Am going down to marinol 2.5mg twice a day today...rather than the 5mg we were using about every 6 hours or so since Monday...if symptoms allow.

The BAD:

  • My stomach is hurting. Fingers and feet are jingy jangy at rest and more so if I touch ANYthing. I haven't even considered touching something cold!  B is thinking we are going to need a reduction in the oxaliplatin next time.  Still deciding what to do with the capecitibine.  Sticking with the 3 tabs twice daily so far, while being mindful of NOT wearing my "stiff upper lip" too long!!!
  • Frustrated that my great plan of making another afghan while getting my treatments and during the "down time" after, has been foiled by these neuropathies!!!  I will make it.  Just thought it would be a mindless, easy thing for me to do during those times.  Oh, well...
Progress thus far.  She will get done, just not in the way I thought!!
  • Similar frustration has been found related to work on my sashiko pillows, in that during this "down time" my fingers can't begin to manage that, as well as in simply sitting on my back porch!  I cleaned it off special before starting this disaster, thinking I could bundle up and rest in my rocker out there to veg or read.  Which I can, BUT!  The air can't be too cold or it triggers neuropathies in my skin as well as my throat/lungs!!!  HOW WEIRD!!!!!  And aggravating!
  • I have some weird drawing of my mouth/lips when I lick them - more yesterday than today.
  • My throat feels thick...as it did last time...but is already improving slowly.
  • Had quite a lot of hiccoughs throughout yesterday.  Yes, they are a potential "side effect" as well!!  Not so many today.
  • I have had jaw pain when I bite down on anything initially...but then it fades...much as it did on the first round.
The DEETS:
  • This are the DEETS on the GOOD news that I view our recent election to be!!!  YES!  For me, the election across this nation that took place yesterday showed a referendum on.....                                DRUM ROLL PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!                                              ~ A FREE AND FAIR AMERICA, that is strong despite problems we do face and work we need to do, and the RADICAL MIDDLE.  Americans are tired of meanness, of smallness, of failure of our leaders to work together to find solutions at home and across the globe.  Americans expect BETTER!!!  Did Democrats win every race?  NO!  Did Republicans win every race?  NO!  But, Americans did.  They talked.  They thought.  They voted.  They are ready for politicians to work and lead.  In our local world here are our DEETS:

Clearly, we live in a heavily Republican district.  BUT....  I am ever so proud of B!!!  He took no donations (though they were offered!!!), raised no funds, spent no money, stood in because the Democratic party asked him to, and he WORKED!!!  Knowing "victory" was not the point.  The point was sharing with others.  Bringing people together to have conversations, discussions, a start on how to make the lives of ALL Tennesseans BETTER!!!  And he did!!!  On street corners, in meetings of every group you can name, at rallies, at protests, at celebrations - he met with others...those who were like minded and those who were not...to share and think about:
  • accessible healthcare for ALL
  • equal rights - no matter the color of your skin, your sex, who you choose to love, or how you worship
  • reasonable gun laws to protect American lives
  • safe and renewable energy
  • environmental policies that leave our children and grandchildren clean water to drink and clear air to breathe
  • investment in infrastructure that allows folks a safe and timely commute to work as well as reasons for growth in business and the economy
  • a safe and secure America that still believes in Lady Liberty and the diversity she knows represents the best of America
  • public education that EDUCATES...our children AND adult learners in order to maintain job security, happiness, and will carry our country forward.
He did all that!!  Think what we could ALL accomplish if we took the time to talk and listen, rather than resort to name calling and ugliness!!  AND...with simple, straight forward, honest talk...gained 9,869 VOTES!!!  His competitor was in receipt of 18,346!  Well done, B!!!  Congratulations, Ms. Hazelwood!

There you go.  RANDOM?  Possibly.  Hopeful?  YES!!! While keeping it real with the GBD's!!! - love, les

Tuesday, November 6, 2018

CAPOX - Round #2 begins! Adjuvant treatment for adenocarcinmoma, ex-goblet cell (or GCC) and me.


Lessons from last round have been helpful!!  Demonstrated firstly in the title.  I now know that this day is but the BEGINNING, in stark contrast to this post -  Treatment #1 ~ 3 month regimen of Oxaliplatin and Capecitabine ~ is DONE!!!!!! Take that adenocarcinoma ex-goblet cell carcinoid! - where ignorance and Marinol got the better of my good sense!!!!  To ease concerns from the start ~ I am doing okay.  Here's the story:

Same routine as last.  There at 0900.  Labs drawn. White count held steady.  Hemoglobin continues to sink albeit slowly.  Saw NP, whom I like and respect.  She is straight forward and knowledgeable.  Went through the litany of the past 3 weeks.

First focus - the neuropathathies.  I explained how they started and gradually improved.  To whit, there is still soreness at my right arm at the IV site (though I think that is a paresthesia combined with an internal chemical burn from the infusion).  My fingertips remain sort of numb and continue to have the pins-and-needles, 'jingy jangy' sensation when I touch things that are cold.  Her response was that the weird response to cold was going to remain throughout this process, but should resolve once I am completely off meds.  That was new, I thought it would wax and wane.  Okay.  She also said that, yes, it was important to decrease the oxaliplatin if I still had problems with neuropathies by the time of the "next dose" so as to diminish the likelihood of them becoming permanent, but their test was whether or not I could still button a small button...or something like that.  I can.  So we left the dose alone.  In regard to the IV, current sensation and sudden burning in the middle of the last infusion, she said she would advise the nurses to slow the med infusion and boost the IV fluid rate in order to deliver the med in a consistently slower and diluted fashion.  And, yes, apply warmth from the start.

Then - on to gut and gastric pain, as well as the diarrhea I have been dealing with secondary to the capecitibine with emphasis on the symptoms over week #3.  Covering the gradually increasing lower abdominal pain with bloating to the more severe cramping pain after being OFF the drug...with even more bloating (I'm talking 6 months pregnant guys!!!  And I had just got over that as caused by my surgeries!!!), tender to touch, tender when taking a seat as the mere pressure of sitting pushes up on the gut causing pain, and pain with every step as it jars my abdomen.  All of which were slightly better on Monday...but still bloated (about 4 months prego) and tender to the least touch.  She looked at the chart and then at us, confirming my capecitibine dose of three tablets twice a day for 2 weeks.  Yep, that's it.  She indicated that very few people can complete treatment at that dose and that she felt it was particularly high for me.  B had discussed this very point with the onc when she prescribed it in our meeting before starting treatment.  Body surface area as the formula for determining dosage is often used in cancer drugs and capecitibine in particular, rather than the more direct mg/kg method, and can be problematic as noted in this report:  Body surface area formulae: an alarming ambiguity  In my case, though I am tall (5' 9") I am not wide, weighing around 128 pounds currently.  Additionally, apparently, you are NOT supposed to endure abdominal pain the entire time!  She recommended and sent in a scrip for levsin to use should I experience anymore of the severe cramping pain, which has turned out to be a good thing, I'll get to later.  At first she was adamant that I decrease my dose to 2 pills in the am and 3 at night, noting that we could even go down to 2 and 2 if we needed to.  Then, on pondering the chart and probably realizing that the pharmacy had already sent me the 3 pill bid dose for this round, told us to take the 3 pills twice daily starting Tuesday and see how things go.  If things start heading in a bad direction, call the office and we will lower the dose as discussed.  OK.  On to the infusion room ~

Things were in their usual jumble of recliners, straight chairs, and pitiful occupants.  We were not greeted as warmly as last time, and were instead told, "Oh, just find a place.  I think there are some seats in the back." With a vague wave in that direction.  Nurses were not as cheery and spiffed up as they seemed to be last time.  Camaraderie was not as evident and the nurse to patient ratio was certainly diminished.  Hmm...  No worries.  After a bit, a nurse that I can only describe as lack luster wandered over and with no other preamble asked where I wanted my IV started.  I told her it had been in the right last time so we should probably switch, but she could look and see what looked best to here.  While looking at my arms in a disinterested sort of way, she asks the inane question, "Have any of these been stuck?"  I replied, "Just a bit, given a recent 3 week hospital stay for 2 abdominal surgeries and a 2 1/2 year trial of nivo."  There was no response to that.  She chose her spot and started the IV to my left forearm.  Not terribly well, mind you.  Too much digging, such that it actually burned (read leaked!!!) from the start.  I mention this to her.  She says, "So, you want me to restart it before your infusion?  I mean, it's in."  I told her I realized that and was just letting her know.  Geeze.  Y'all know I do not care at all what somebody looks like, but so you might as well get this in living color:  Pasty face with too much dark foundation.  Shapely, cute girl in late 20's early 30's.Big wedding ring. Over bleached long yellow hair and significant dark roots, looking a bit worse for wear.  Clear that it is too often flat ironed or curled in good a old southern style that is too big and too fixed to be the super model 'beachy waves' that are probably the goal, though today I am not sure it has been combed.  She smiled exactly zero times during all the hours we were there.  Spending most of her time propped on her elbow, chewing gum and frowning, while staring at her computer screen.  Easily turning a deaf ear to a cacophony of infusion pumps alarming in her area, including mine.  She did scrounge up an ancient, small heating pad for my arm, which helped as I had only one of my hand heating pads and it was a bit too small for the job.

I took a 5mg marinol and ate breakfast at home before going in. I snacked on tea, crackers and a banana B brought in for me.  The nice church people were there with their water, chips and sammies.  It all went pretty well for about 2 hours.  The warmth helped.  But, during the entire oxaliplatin infusion, my hand (below the IV) burned liked fire. Due to increasing neuropathies, as I developed the pins and needles with pain (not terrible...but still) to my fingers and feet within the first hour, but also due, I suspect, to the fact that the IV leaked all along.  At the 2 hour mark it was hurting so much I checked the site myself...bleached blonde had NEVER done so...and noted significant new swelling at the site.  With my nurse nowhere in sight, I waved over the nurse I had last time (Tall, noted to have smiled many times to various people on this visit as well as last, pixie cut, dark with a few threads of grey, a bit androgynous, mid-30's, smart and efficient.) who after a methodical exam said, "Oh, dear."  Stopped the infusion.  Flushed the site...which burned...but noted that it still had a good blood return.  (All consistent with my diagnosis of a leaking IV!!! BTW!!!)  She consulted with a very good nurse  (possibly the charge nurse ?) whom I had noted had continued to work in a manner consistent with the one she demonstrated during our the last visit, as did tall girl.  I could see her adamant negative head shake across the room.  Tall lady rapidly returned, removed the IV, started a new one efficiently, and we were rolling again.  Nausea was there like a wall as before.  Just a sudden presence.  However, having had the mairnol in the morning, it was not as bad as last time.  I took another there. Then, after observing tall girl give a report of my situation to blonde girl, blonde girl stomped over and without a word started mashing buttons on the pumps.  No explanation.  Upon her departure, B noted that she had changed the setting so that the med infusion rate was increased and IV fluids decreased so that I received the entire second 'half' of my infusion in 1 hour!  Guess she was ready for us to leave.  Yes.  It burned more.  Yes.  My Medical Meerkat was displeased.  I managed through it.  Other than asking me to help start the tape removal, blond girl had nothing to say when I was done.  Some people ain't right.  Oh, well...

As to a cause for my perceived difference in attitude noted in the unit throughout?  While I clearly do not know, I do have a theory.  They may have been working short because coworkers were ill.  Perhaps they were down because of some loss.  Though they seemed happy enough when chatting with each other about a party they were going to attend, who all was going, what was to be served.  "What's this business about duck?  Gross!!  Where's the hot dogs and burgers?"  Who knows?  But.  While Medical Meerkat watches me, I take in the scene.  Last infusion, I noted three folks with tags and white jackets - in a sea of blue scrubs - inscribed with the name and logo of the Sarah Cannon Cancer Center out of Nashville, with which Memorial is a partner - going room to room with clip boards and such.  I presumed then, that perhaps Memorial was taking part in a trial new to them and folks from Sarah Cannon were there to mentor them on the protocol.  No Sarah Cannon peeps were present this time and now it seems more likely that they were completing an inspection of some sort for which the staff was on their P's and Q's!!!

Made it home okay.  Quite nauseous with cramping during the trip.  Am ever so grateful that I do not have to travel all the way from Nashville for this!!!  Washed my face.  Changed into baggy lounge pants and a tee...a number of which I am going to BURN once this ordeal is done!!!  Took a levsin.  Went to bed.  B brought me a marinol when it was next due.  Slept until 6:30.  Vegged out in the recliner.  Ate some chicken soup with rice.  Then 4 doughnuts.  B was happy!  HA!  Back to bed!!!

Poor fellow.  Monday was his birthday.  I told him I was giving him the greatest gift ever ~ my undivided attention for hours and hours!!!  Ruthie's joke really, as a response I could give her brother, when I told her I felt bad that he had to spend his special day in a treatment room with puke-alicious me!  I did make him a Birthday Cream Cheese CAKE Pie last week to celebrate!!
The boy loves anything....
... made with Eagle Brand! 
















He even got to lick the can!!  BLECH!  AND, I did manage to surprise him yesterday with some bow ties I conjured him when he wasn't paying very close attention to my sewing efforts!!!

He loves him some color, too!  I fear the one on the left made from a scrap of an African Wax print, was a little too fragile for the purpose, so I doubt it will last too long, but it should be fun for a bit.
I slept pretty well through the night.  This morning, despite being incredibly tired and somewhat nauseated, my belly pain is ever so much better than it has been and the swelling is gone!  Don't know if that is simply due to more time passing from my last capecitebine dose, the levsin, the pre-med decadron and/or aprepitant I get with my infusion, or possible anti-inflammatory properties of the Marinol that I restarted, having stopped it when I stopped taking the capecitibine.  Whatever the cause, I am thankful.  We will see what happens next, because after getting up around 0600 this morning, and  some tea, banana and toast with a dash of marinol and pepcid, there was this....

Capecitidine, here we go!!!  YUM!!!
We be drivin' Miss Daisy.  It has taken me all day to do very little.  Trying to resign myself to my zombie-fied state.  But - we be drivin', Bentie.  We be driv'n!!! - les