Is This The Sound Of The Second Shoe Dropping?
Back when Harvey had his mysterious and quickly-resolved rash on his hands and legs, the transplant team referred him to the Dermatology Department. They examined the rash, did a punch biopsy and later opined that the rash could be consistent with GVHD. Not exactly a strong finding of GVHD, just that it could be GVHD.
Since I am not one to miss an opportunity, I pointed out a small dark patch of skin that Harvey has sported on his right cheek for more than a decade. It had an uneven shape, was darker in some places than in others, with irregular borders. I thought these were sufficient reasons to be concerned, but what do I know, I am only a layperson, an over anxious spouse. We have asked a series of dermatologists to look at it over the last seven years. Each time we were told it was nothing to worry about. Since we were now in the presence of a real expert in oncological dermatology, I brought the “spot” to the attention of the attending physician.
Once again, we were told this is probably nothing more than keratosis, a case of hyper-pigmentation and of no medical consequence. But since it is something that is causing us concern, we were offered the option of having the offending patch frozen off.
I am sure many of you have had moles and the like frozen off with liquid nitrogen. It takes but a few minutes, they do not even use any local anesthesia. The doctor was obviously a senior guy who has done this a million times before and it took less than a minute to douse the patch (about 3mm by 6mm in size) with super cold liquid nitrogen.
Post-Freeze Guidance
We were told the area would blister, weep, and then the sore would form a crust and heal over. No need for any dressing or special handling. Not even a scheduled follow-up appointment. It was all pretty much a routine thing. I felt a little silly about insisting on this consultation and procedure, a long string of dermatologists had pronounced it of no medical consequence. Harvey rolled his eyes at my excessive caution, but went along with the procedure because of all the times I have preached the risk of squamous cell carcinoma in immune compromised CLL patients.
Now They Tell Us
The big freeze was 6 days ago. Sure enough, the site produced a most impressive blister that produced copious amounts of “weeping”. Then the blistered skin sloughed off, leaving behind a round, red, angry looking sore. No problem, the darn thing did not hurt at all and we were calmly waiting for it to crust over and begin healing.
Today our ever so observant PA (Physician’s Assistant) decided she did not like the way the site looked. She then went the extra mile and got us in to see someone at the Dermatology Department right away (Thank you, Emily!). In walked a doctor and his 3 interns under training. They looked at the site, touched it, hemmed and frowned, and finally opined it looked “odd”. Great. Please define odd, I asked humbly.
Well, they said, it could be nothing, just a case of inflamed skin tissue. Or, on the other hand, it could be squamous cell carcinoma, basal cell carcinoma etc. They then proceeded to tell me that skin cancer can be quite dangerous in CLL patients and immune compromised patients, especially when they are under immune suppressants like cyclosporine as part of their post transplant care. Yeah, I really needed this lecture about the dangers of skin cancer in CLL patients.
Meanwhile, We Wait
The medical consensus is to use a topical steroid cream on the spot, to see if that will take care of the potential inflammation. One week later, the site will be evaluated again. If it still looks “odd”, the next step is a biopsy to see if it is indeed squamous cell carcinoma or some other type of skin cancer. Surgery looms, if the biopsy comes back positive for some form of skin cancer.
I am fit to be tied. It is not as if I have been careless or remiss in addressing a potential problem. I brought it to the attention of countless oncologists and dermatologists. None of them suggested any action other than ignoring it. I am tempted to think they looked at Harvey’s brown skin and assumed he would have a low risk of skin cancer. Now, right when we are going through a complex cord blood transplant, we may have to wage a war on a second front.
I almost did not write about this latest development, it is such a depressing report. But then I remembered I promised to tell the whole truth about Harvey’s journey - and this is very much part of that experience. We hope for the best at our next meeting with the dermatologists, we hope the steroid cream does what it is supposed to do. But even if they pronounce satisfaction and that it was, after all, only inflammation that caused the site to look “odd”, I think this time I am going to insist on a full biopsy.
Be well, stay out of the sun!
Chaya
29 comments on "An Unexpected Left Turn?"
Follow-up comment rss or Leave a TrackbackThank you for writing this report even though I know it must have been difficult to do so.
Got a few tears here thinking about how frustrating/anxiety producing/etc. this must be for you both. I and others share experiences with not feeling heard by the medical community. Usually the stakes are not this high.
Well, what we have hear is a community of people who care and will be supporting you, praying for you, cheering for you.
And, a community of people where I don’t think it is at all improbable that several people will be helped by hearing about this one situation.
I am recovering from one of my rare sunburns because I was not careful when applying my sunblock. I’m not going to be worrying about this but more careful next time. And, perhaps a bigger thing is that I am going to continue to be vigilant about asking questions of my medical providers.
I feel blessed to be hearing your true story and you entrusting pieces of your hearts to a community of people you don’t know. You do this because you care and because you hate this disease. I hope I can be reminded of your actions when I can do likewise for the people around me.
Liz W.
One thing I like to say is, “the truth is our friend” and no matter how difficult, I do believe it.
I know how frustrating this must be. As someone with more than a few skin patches that have been burned off with liquid nitrogen, as well as several others that have been probed by dermatologists, I am guessing this is probably just something that may look odd but which is not cancerous. If Harvey had a propensity for this sort of thing it might have shown up during immunosuppressive therapy he had in the past.
But I certainly understand your caution and your concern given his fragile state today. And to have to put up with a CLL and skin cancer talk, well, I guess they didn’t know they were talking to the one person who has done more than anyone on the planet to raise awareness about this issue! Aaargh!
Here’s hoping the steroids work wonders, as they often do. You are always in our thoughts!
You have written so much about CLL & skin cancer. We well remember the spot on Harvey’s face. It is truly amazing & typical that all of those doctors did not spot it & deal with it immediately. Good luck with this issue & keep on fighting for Harvey - everyone needs a care giver as wonderful as you are!
Chaya:
Nothing is simple. And you are completely correct to insist upon a full biopsy test. Patients need some reassurance and sometimes the way to get it is to go the extra mile. You are an inspiration to us all to insist on complete full answers and disclosure. May this be just another wrinkle that smooths with time.
chaya: over the past four years i have developed multiole scalp/forehead lesions of squamous cell carcinomas, my dermatologist biopsies first, then does the appropriate procedure. hang in there, we hang onto every update.
It’s ashame that the medical community ignored your guidance. I see it time and time again, if they have something pointed out they missed, they explain it “away”. Then they also complain that their patients do not tell them the whole story. They need to check their ego’s at the door before they go through the door to see the next patient. So sorry this happened to you. We will pray for the best.
Chaya,
I understand your frustration and concern, especially since you have brought this to several doctors’ attention. With skin cancer I think we never know without a biopsy. I have seen tiny nondescript spots turn out to be skin cancer and ugly uneven brown patches turn out to be nothing. I hope PC’s is nothing.
Thinking of you.
Chaya and PC
It IS frustrating. Over a ten year period, I showed 5 dermatologists a bump below my ear, that was the size of a dime, and twice as thick. They all pronounced that it was of no concern.
I then asked to have it removed for cosmetic reasons. It biopsied as Squamous Cell Carcinoma. A full follow-up operation has left my neck looking “hollowed out” and my shoulder partially disabled. A neck dissection disturbs the nerve that controls the trapezius muscles.
So much for expert appraisals.
Charles Hull
I can only imagine how frustrated you are. The only thing for everyone to take away is that any lesion to be removed in patients with immunosuppression should be biopsied at the time…no matter how “certain” the dermatologist is. of course, pathologists can err as well so once again we learn, “there is no free lunch”.
I’m hoping that all turns out well, because that’s all that I can do.
Good luck,
DWCLL
Harvey’s capacity to endure must be great. Psychologically, he must be made of tough stuff and well centered for what gets thrown at him. Because you did not mention the fevers I am hoping that they are no longer an issue, or have at least receded. Could the fevers have any residual effect regarding mole removal reaction? I am wondering what Harv’s immune system looks like at this point?
Because of Liz’s post on having been sunburned I am going to post to the ACOR list an experience I just had concerning sunblock. Chaya, we might all benefit from your take on what I report as well as dermatologists you have contact with.
Overcome Harvey Overcome! and be well Chaya.
Chaya,
I am so very frustrated for you. I have a full body exam by a dermatologist every year. Last year she found two questionable lesions. One in my mouth and one on my forehead. Bx done on each. Results were benign. But you never know.
Thank you for sharing your experiences. We can all learn from each other.
My prayers and Blessings to you and Harvey.
Rita
Dear Chaya,,
Thinking of Harvey and you every day;;
I will not talk about my own for the moment…
What can I say ?
Good luck with the test, Chaya, Harvey;
And we know the medical world…
Take care.
Sandra (Belgium).
Dear Chaya and Harvey, Thanks for writing. I’m so sorry to hear about your latest experience. Been there, done that. Wouldn’t wish it on anyone. But hang in there, this too will pass. Thinking about you two all the time, hoping with my whole heart that everything works out great.
Keeping On,
Tom and I have learned the hard way about those suspicious spots. I am always pointing out to our dermatologist areas that look funny (not ha, ha funny) on Tom to me. He bypassed all of them and went to a very non-descript mole on Tom’s eyebrow. He was very concerned, removed it and melanoma came back. 3 surgeries later and Tom is clear. I still point out what I believe looks suspicious, but he says it is nothing to be concerned about. I am feeling your frustration over this. Sometimes, we just can’t scream loud enough to be heard. I’ve heard great things about the cream that Harvey is using. Good Luck and I will be hoping that this ends up as just an aside in your journal and not a new chapter.
Hugs
Of course you are frustrated!!! Sometimes the only way to get through to medical docs is to frame what you want/need in an unequivocal request. PC is fortunate that he has you as his advocate. As a patient, I have experienced similar frustrations even in the setting of one of the top 5 medical facilities in the country. Doctors miss things and make errors. We just don’t expect it.
Learning from your experience (yes you are educating us when you give us this first hand information), I will be asking for a biopsy on a similar spot on my face. I’ve had it frozen off 3 times, but it comes back after the healing. Now, I KNOW I should have and will have a biopsy done. Thank you so much for teaching me and maybe some others about this issue.
Chaya, I have total faith in you. Having knowledge is one thing, Going through the process, even when you anticipate and know there will be rough spots, is another scenario. We can’t ignore our emotions, but we can insist on having our physicians listen to us, respect us and maybe even learning from us.
I’m eager to hear the words all clear and out of here, very, very soon.
Let’s just pray that it heals and that it was nothing, and again, something you will remember when you are are looking back on all this well and happy and active and in love. You really do have a love story. Through all the hard tines, all the trials, when I read what you write, I am aware I am reading a most profound love story. As always my heart and hope is with you both. Nancy xo
Please give us an update about this as soon as you are able. I’ve checked back a couple of times hoping for good news. I cannot thank you enough for your coverage of skin cancer on your site. I too have been continually blown off by dermatologists and hem/oncs about unusual spots and learned shortly after dx to ask for a biopsy only due to your research - “reduced threshold for biopsy”. After several BCCs early on, just recently a SCC was diagnosed and treated that two dermatologists thought was dry/irritated skin and a slight discoloration on my leg. “It’s probably nothing.” I know this sounds familiar!! I pray in Harvy’s case, it is true.
Thank you for all the support and love. I would find this process a lot harder to handle without my “family” chiming in with encouragement.
We have an appointment next week wednesday with the dermatologist that did the freezing. I am curious to know what he says, whether he too thinks the healing process looks “odd”.
The fact that gives me some hope this is not a bonafide skin cancer is that Harvey had it on his cheek for more than a decade. Plenty of times since then when he has been deeply immune suppressed, either due to the CLL or the therapies he went through to control the disease.
For example, as part of his cytoreduction process ahead of the transplant, he had five cycles of Humax-CD20 + full strength fludarabine (the equivalent combination of RF therapy). With all that fludarabine, I would expect he had no T-cells left worth talking about. If this spot is malignant, surely it would have kicked off then? Or at any point in the last sever years of cohabitation with CLL?
Anyhow, that is my story and I am sticking to it - unless facts prove me wrong.
I am sorry there is not more definitive news to report. Transplant process is a very familiar game of hurry up and wait, heart wrenching crisis followed by utter boredom. Enough to keep the old adrenalin pumping, in this type A personality care giver.
Many thanks for the good wishes,
Chaya
Hi Chaya,
Reading your story was like a page out of my life. AS a PA and CLL patient I just had the same experience. One my facial AKs turned out to be squamous cell carcinoma, which I will have removed by Mohs Surgery in 2 weeks. At least in my case the dermatologist was really on to it very soon and suspected the worse when it did not disappear after the liquid nitrogren treatment. It is very thin and I should be fine. This is my second SCC and I did have a normal healing from the first one despite CLL.
Before my CLL dx, I had this unusual spot on my back that my wife did not like the looks of. So off I went to the dermatologist who told me it was nothing and to only come back if it grew or changed. We it did neither, but just stayed there looking ugly so finally my wife was sick of seeing it, so I went back and told them to just wack it off. As he dropped it into the path bottle he said, ‘This is nothing. I have seen dozens of melanomas and this is clearly nothing, so you will not be hearing from us” Well a few days later comes the call that it was a melanoma all along, this is a year after I first went there. I then had the experience of waiting a month for surgery and lymph node biopsies which came back OK, but this was really a close call..the thing was just beginning to spead it appeared when they took it off!
The lesson is to have all suspicious lesions looked at with a dermascope! The doc who missed by melanoma was a “worldwide expert” on melanoma. When I called him to ask why he had missed my diagnoses and almost killed me he confessed that,”This is the first one I have ever missed in 20 years and this experience has forever changed the way I will practice. From now on I will dermascope all such lesions, even I do not suspect them. Your case has been a great teacher to me”
So try and convince the derm people to go the extra mile, especially for we the CLL community!
My thoughts and prayers are with you and Harvey!
love,
Alex
Thank you, thank you for writing about Harvey’s skin condition. I am confident that you will hear good new about it. I have been ignoring a “dry patch” which I have had on my face for some time now. I will definitely see a dermatoligist ASAP.
Any long-term hospital experience can be terrifying at worst and frustrating at best (I spent 3mos with my son who sustained a head injury due to an auto accident at age 16). Harvey must be an incredibly resilient man and is most fortunate to have you on his side (as are we all). It will all be worth it when you and Harvey can go home to beautiful Sedona.
I think of and pray for you and Harvey daily. I know that all will be well.
Thank you again for all that you do for those of us with CLL.
Take care,
Anna
Chaya,
Been away for six days and had computer problems before that. I have been plagued with skin problems since 1977. My first dermatologist insisted I use topical creams to clean up my head. After 28 years I learned that the creams contained a chemo drug and the pharmas acknowledged that these creams can cause problems with white blood cells (Duh!). Parallel to the findings I realized that the scalp was developing more actinius, basal cell, and squamous cell growths. When I saw Dr. Keating at MDA last July, his first reaction was to cover my exposed skin all the time, which I have been doing since 1977. He reviewed with my wife and me the potential problems of skin cell carcinomas when one has CLL. OK! Now what? I have been gassed (CO2)regularly since 2024 when I dropped the cream use every six months. After my last bout with sqauamous cell carcinoma in May 2024, I am now on a three month schedule to see my dermatologist. I agree with all the other writers here that biopsies are a requirement every time a bad looking patch appears on one’s skin. You need to just make a specific demand for biopsies. Geez, when is the medical field going to recognize the inter-relationships that exist within our own bodies that present such a case as PCs?
Both of you hang in there. It will get better!
Barry
Dear Chaya:
Sorry I have not checked your journal in a while-life takes you away-floods in Iowa that have affected us only slightly, a death in the family of a dear aunt-it’s called life. I am glad to see that you are both hanging in there. I hope for good news on the skin biopsy. I love and admire you both,
Beth Havey
Ah, dermatology! Interpreting skin spots seems to be the medical equivalent of reading tea leaves!!
After a squamous cell lesion led me to a dermatologist some years ago, I began the ritual of semi-annual full-body checkups, purportedly so that any further skin cancer would be caught early and removed with the least risk and discomfort.
Well, not exactly. A small spot on the bridge of my nose was passed over repeatedly until late last year when I asked about it, and the dermatologist casually decided to do a biopsy. It was a basal cell lesion. I had Mohs surgery which left me with a “defect” (i.e. a big hole - I love medical vocabulary) which was then repaired by a cosmetic surgeon. Not a terribly unpleasant experience, but it reinforced my belief that patients need to be active participants in their care and engage their physicians.
Obviously, a skin cancer, even something as innocuous as basal or squamous cell is nothing to toy with when one’s immune system is on sabbatical. You are absolutely right to stay on top of this thing. Hopefully it is nothing of consequence.
All my best to you and Harvey. Keep the faith and keep up the fight. You are an inspiration!
-Grant
Do not ever under estimate or let your physician under estimate CLL by calling it the “good kind of cancer”. It can be a killer no matter what chemo regimine you throw at it. My husband died after 62 healthy years and after a three year struggle and three chemo treatments. Richter’s transformation is deadly and if at all possible go for a bone marrow transplant at the first sign of a possible remission. Don’t wait and hope it will go away.
Good luck to Harvey I admire his fight and know how hard it is for a wife to sit by and watch. God bless you both and show us all the battle can be won.
Dear Chaya & Harvey, I’m a ten year “smoldering” & still symptom free-almost- untreated cll carrier. I have basil growths removed from my nose & shin. Today on ABC they did a story on the Fred Hutchenson break thru Melenoma cure. It seems that they grew the cancer fighting cells from the hosts immune system. They then introduced them into the Melanoma cell growth & reported that the Melanoma cells died & that no other M-cells were found!
I am one of your grateful & prayer full readers. Thank you. Stan
You are both always in my mind and heart. Hope all is going well. Every day you are closer to freedom and safety and being healed. Brian Koffman gets his transplant on the first. In some ways I feel that you both are leaving me. That you will both be free of this and I am so excited you escaped, you made it to the promised land. I am stuck here in the thick of it, and I wonder more each day about a transplant for me. I love you Chaya and PC! What you did helps others to get the courage to do it also~ Your CLL topics has changed the face of CLL for all of us, many thanks.
Hi Chaya,
We hope and pray that PC continues to make good progress and that this latest concern does not turn out to be a major problem.
This journal is both informative and brave - a real inspiration as to what can be done to beat this disease while at the same time not holding anything back about the cost of such a course of action.
Thanks as well as best wishes to you both.
Graham & Andrea
Many thanks to you both for the journal. I know that it has inspired several people in the UK to go beyond pallitive treatment. I’m saddened that you have had this problem, with all that you know and understand. It is a totally unreasonable situation. After some years of dealing with UK doctors, most of whom are very good, I have learnt that just as in anything else I have to be very specific about what I ask for, smile, and ask again.
We often don’t have the degree of control that we would like to have in medical situations, and can’t anticipate everything however much we know. Don’t be hard on yourself.
Wishing Harvey and yourself all the best and a swift happy resolution to this.