Dose 1 = 12/27/2010
Sites of the local injections to my thighs were red and tender.
Dose 2 = 1/14/2011
Thigh at injection site = sore and bruised. Already getting "contra-lateral" reaction...meaning the leg that was injected LAST time...became red and tender as well, within 2-3 days after infusion/injections.
Dose 3 = 1/28/2011
Twenty-four hours after my third dose I felt beat up and sore all over "like [I had had] a big work out the day prior" but had not!
Dose 4 = 2/11/2011
Two days after this dose, I noted the development of vitiligo on my hands and arms. Ten days later: "really tired". Brent pointed out that at this point the half lives of the medication had converged and therefore remained at a steady state somewhere following the 3-4th dose. This was later confirmed by Dr. Weber.
Dose 5 = 2/25/2011
On Sunday, after Friday's infusion, "I feel like something the cat dragged in...after Zeno played with it for an hour!" That's not good y'all!!! I took my first Monday off from work.
Dose 6 = 3/11/2011...3 MONTHS DONE!!!!
At my visit, Weber reports that fatigue is the most common side effect being reported in my study. Since I was still working and running, he assigned my fatigue, as I reported it above, to be a "1" on a 1-4 scale with 4 being the highest. He was pleased to note the enlarging lymph nodes in my groin. Pain in legs at injection sites continues.
Dose 7 = 3/25/2011
My scans at the 3 Month evaluation showed "ground glass appearance" in the right lower lobe of my lung. I was also having wheezing at the time. Scans were reviewed by the tumor board at Moffitt and determined to be related to my asthma or an inflammatory process that Weber had seen before in patients on ipi. Wheezing gradually improved on albuterol and inhaled corticosteroid; symbicort. Perhaps most importantly, the 3mm something???? in my brain on my MRI when I started is GONE!
Dose 8 = 4/8/2011
Was told a patient in my study had developed retinitis. Vitiligo increasing. Hemoglobin decreased, possibly due to leukophoresis. Sore, itching legs. I smell and taste bad....at least to me. Others report no notice of smell. I have developed mouth ulcers. For the past couple of rounds my mouth had felt "dry and weird" immediately following my infusion, for which Ruthie would get me a lemonade, that helped.
Dose 9 = 4/22/2011
Weber reports that rash, itching and fatigue are being commonly reported at my visit. His conclusion: I am less tired than most. Patient in 3mg/kg cohort had to be removed from study due to partial blindness following inflammation of the optic nerve, but was improving with steroids and discontinuation of meds. When I reported mouth ulcers that had decreased for the moment, Weber noted that I am the second person to develop mucositis.
Dose 10 = 5/6/2011
Mouth ulcers are present by the afternoon of treatment, along with significant joint aches and rash....red papular and itchy to back and legs. But, 2 weeks later mouth lesions have faded.
Dose 11 = 5/20/2011
More of the same.
Dose 12 = 6/3/2011....6 MONTHS DONE!!!!....last every 2 week infusion!
Vitiligo increased, now to arms, back and chest. Very itchy....sometimes with visible rash, sometimes not. By August, itching continues and I think that maybe it gets worse in areas just before they develop vitiligo. Hard to tell.
Dose 13 = 9/13/2011
First dose of anti-PD1 with NO VACCINES!!! Administration seemed like a breeze. Weber took pics of my vitiligo this time. Tried to explain various skin lesions to Weber. Sometimes it is more like a "rash" with scattered red papules. At other times, there are "papular, rough nodules that grow in size, scab over and then gradually resolve though this can take weeks. He felt they were due to inflammation and its resolution as cells were destroyed." Had "persimmon mouth by noon". Within 24 hours, arms and legs "felt as though they weighed a zillion pounds a piece" with aches in ankles and knees. I posted my first pics of my vitiligo on my blog that month.
The strangest lesion I developed during this entire 2 1/2 year period occurred in November 2011. Brent remains convinced that had the lesion described below been biopsied, it would have been melanoma.....
Sunday,
November 6, 2011
Ever since my last infusion of
anti-PD1 in September my skin has been flared up and irritable.
The granulomas on my thighs have remained red, hard,
inflamed and itchy. Back and arms very itchy. Bilateral inguinal
nodes have remained constant (they used to come and go) with the one on the
right measuring about 2cm and the largest on the left measuring about
1.5cm, followed with another of about 0.5cm, and a tiny one finishing out the
trio. Vitiligo continues to increase. Just before our trip to California
(10/4 or 5), during a very itchy flare on my back, I noticed a small circular
patch of dry skin just below the scar from my initial lesion. I completely
forgot about it during our vacation. But, when we returned (10/15),
I was very surprised to feel a lump there. The documentation
follows:
10/15 - 8.1 X 5.5mm smooth, flesh colored, circular, domed lesion in the exact same location as the dry patch below my original excision scar.
10/17 - size unchanged, texture the same, color now = dark pink.
10/20 - lesion remains same color, size now 7 X 5.5mm.
10/21 - lesion now 5 X 5.5mm with a black scab covering 15% of the top edge.
10/22 - more of a scab has developed, size = 5X4mm.
10/23 - 5 X 3.5mm, with surface now dull and a greater area is covered with a scab.
10/25 - 5 X 2.5mm, lesion now mostly flat scab
10/26 - scab missing, flat pink macule is all that remains.
Today - Brent can find nothing more than a flat, ovoid, pink area.
So...what was all that business???? Brent was very worried. At first he wanted me straight to derm to have it removed and analyzed. Then, worried about being kicked off my trial, we decided to watch and wait. Was it one of the lesions that Weber, Ruthie, Brent and the NP already observed...some inflammatory nodule often occurring before more vitiligo? Was it a met...which I think is what Brent feels it was? Melanoma mets can be black, or bluish, or pink, or red. I don't know. It was truly weird and unlike the other lesions was very smooth, at least initially. The others have been almost like a pimple or a bug bite for the first couple of days, rapidly turning brown and rough...but never with a black scab. Brent worries for this posting. But, perhaps, one day, such documentation will make a difference. Anti-PD1 is new...and nobody is talking. Given how challenging the last infusion was, I can't say that I'm looking forward to my next trip to Tampa on Dec. 8th for infusion on the 9th...given, of course, that scans are clear on Dec 2. Then again...maybe it's still fighting off cooties and is the only reason I'm still here!
10/15 - 8.1 X 5.5mm smooth, flesh colored, circular, domed lesion in the exact same location as the dry patch below my original excision scar.
10/17 - size unchanged, texture the same, color now = dark pink.
10/20 - lesion remains same color, size now 7 X 5.5mm.
10/21 - lesion now 5 X 5.5mm with a black scab covering 15% of the top edge.
10/22 - more of a scab has developed, size = 5X4mm.
10/23 - 5 X 3.5mm, with surface now dull and a greater area is covered with a scab.
10/25 - 5 X 2.5mm, lesion now mostly flat scab
10/26 - scab missing, flat pink macule is all that remains.
Today - Brent can find nothing more than a flat, ovoid, pink area.
So...what was all that business???? Brent was very worried. At first he wanted me straight to derm to have it removed and analyzed. Then, worried about being kicked off my trial, we decided to watch and wait. Was it one of the lesions that Weber, Ruthie, Brent and the NP already observed...some inflammatory nodule often occurring before more vitiligo? Was it a met...which I think is what Brent feels it was? Melanoma mets can be black, or bluish, or pink, or red. I don't know. It was truly weird and unlike the other lesions was very smooth, at least initially. The others have been almost like a pimple or a bug bite for the first couple of days, rapidly turning brown and rough...but never with a black scab. Brent worries for this posting. But, perhaps, one day, such documentation will make a difference. Anti-PD1 is new...and nobody is talking. Given how challenging the last infusion was, I can't say that I'm looking forward to my next trip to Tampa on Dec. 8th for infusion on the 9th...given, of course, that scans are clear on Dec 2. Then again...maybe it's still fighting off cooties and is the only reason I'm still here!
"I know it is time for my bug juice since I feel fully energized, though nightly itching, occasional weird rashes, ever increasing vitiligo, and the sensation that my tongue has been run over by a road grader...continues." We were told at this visit that "3-4 of 50" patients in my study have developed vitiligo. Even at that time, Weber spoke of his desire for a "sandwich study" with patients getting a couple of months of anti-PD1 followed by ipi then finished with some prescribed quantity of anti-PD1.
I was very itchy for weeks after this infusion with a rash to the torso and flares of prior vaccine injection sites (granulomas becoming red, hot, swollen....again!) even though it has been 6 months since any vaccines were given. It is becoming clear that I always have an "asthma flare" about 1-2 weeks after each infusion! Hmmmmm.....
Dose 15 = 3/2/2012
At this visit I learn that there have been 2 patients in my study to develop colitis...with one currently hospitalized...and two episodes of patients with pneumonitis. It remains unclear whether patients on the 3 or 10mg/kg are having increased side effects since they are still so early in their trial. For the first time, 20 minutes into the infusion of anti-PD1, I developed a small itchy and specific, obvious blotch (hive/urticaria) to my right cheek that faded within 30 minutes or so after the infusion. I later learned they are premedicating groups at a higher dosing level with Benadryl and Zantac. Within days of the infusion there are significant arthralgias in my ankles, knees, elbows, and wrists. My mouth feels dry and "weird" but no lesions so far. Feel "stinky" and smell and taste myself!!! And, that's not good!
One week later....mouth lesions are full blown. There are red flared granulomas to prior injection sites and continued increased size to bilateral inguinal nodes. Arthralgias continue off and on.
By April first, mouth lesions are gone and aches and pains are much improved.
April 14: Awakened from sleep at 2AM tongue hurting, joints throbbing. Spent the next couple of days feeling as though I had just been given the med, but gradually improved.
Dose 16 = 6/8/2012...1 1/2 YEARS DONE!!!!
Side effects were not too bad this time. There was sensitivity and tenderness to my tongue, but no lesions. Pain in hands, wrists, and elbows....at first enough to waken from sleep....but then just dull and achy.
Dose 17 = 9/7/2012
Had another episode of hives to my face during the infusion. Very tired after. Worked the Monday following with all my peeps saying..."You look tired!" "You're pale. Are you okay?" Had muscle aches like you might feel with a high fever....but....NO fever! On Tuesday, sore muscles were better but had pains in wrists and ankles. Two weeks later - all side effects were better, though aches to shoulders and wrists continued.
Dose 18 = 12/14/2012...2 YEARS DONE!!!!
On 12/16 I wrote: "Itchy, Stinky, Achy, and Tired...the Four Horsemen of anti-PD1!! Just finished an INSANITY workout...Yeah, yeah...it was only the cardio recovery set...and yes, I did feel like I was going to throw up once...but...I DID IT!!!"
Dose 19 = 3/15/2013
During the first week following this infusion I had tender cheeks and gums, such that brushing my teeth was very painful. I was awakened three days later with mouth pain. My tongue was raw with deep painful lesions underneath. Shoulders, elbows, and wrists were sore. In one more week I was wheezing badly, my nurses were quite alarmed (as always...don't know why we can't get used to the cycle!!!) and urging me to take a Decadron shot. No can do!! But, with nebulized albuterol and atrovent, and an increased dose of my symbicort, I gradually got better. Vitiligo continued to increase and I posted another set of pics on the blog. By May 20th my tongue was raw with a host of new lesions. It had been getting better!!!! What the tub?????
Dose 20 = 6/7/2013...2 1/2 YEARS on anti-PD1...LAST DOSE!!!!!
Got confirmation at this visit that no more peptide vaccines would be used at Moffitt as a treatment strategy. Weber was duly impressed by my mouth lesions. On the 8th I noted, "Extremely tired this morning with anti-PD1 aches in my ankles, knees and toes and road rash on my tongue."
In August, the arthralgias had abated. Mucositis with mouth and tongue ulcerations, bleeding gums, tender lips....had demonstrated NO improvement.
Recheck after completion of meds = 9/13/2013
Learned that I was the ONLY patient out of 120 who had developed mouth ulcers. Others had developed sore, tender gums and mouth with mucositis...but no ulcers!!! So, there's hope for the rest of you!!! Anyhow, though Weber (and my dentist) continued to be very impressed/aghast with the ulcers remaining after treating with Peridex and 24 hours worth of Valcyclovir...I am happy since they are ever so much better and almost pain free.....finally. Weber also spontaneously noted that my vitiligo had continued to increase since my last visit.
Note: There has been some discussion in the press, on boards and with Dr. Weber regarding 5 patients out of the 120 in my study who developed shingles. The jury is still out on whether that is a direct result of anti-PD1, since the age of most of the patients in the study is such that they are the folks who would be most likely to contract shingles with anti-PD1 or without it.
TODAY
Feeling well. Running 3-4 miles at least 3-4 times a week...occasionally more often. My mouth ulcers remained minimal for about 4 weeks, but then began to rear their ugly head again. Restarting the antibacterial mouth wash did nothing to help. Currently, they are not as bad as they had been, but I do have a fairly large eroded place with exudate to both sides of my inner cheeks by my molars and under my tongue is raw, red, and tender. Perhaps the meds that I thought so highly of did nothing, and it was just time for the lesions to wane. OR.....perhaps I HAD developed a secondary infection in the lesions since they had been there for over 4 months...nonstop....that the meds did help with...and this is just another anti-PD1 flare, with no infection. Just anti-PD1. Doing its thing. In the words of Weber...."This stuff is WEIRD!!!"
Best. - c
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