You may recall I had a neck dissection followed by 6 weeks of intensive radiotherapy which finished about 6 weeks ago. This was to treat SCC of the parotid gland which had spread to lymph nodes in my neck
I got through all of that ok and managed the side effects from the RT.
Even my CLL was in remission.
So imagine my horror to find another pea size lump in the same place as the original surgery. This was quickly diagnosed and I got the phone call we all dread on Friday.
Despite the RT the cancer is back and in the same area. This means it's aggressive enough to grow despite RT. My case will be discussed at the next MDT but it's unlikely surgery will be possible and treatment options could be limited to immunotherapy. I also have ulcerative colitis which seemed to worry the oncologist. My cancer is not curable and my future is extremely uncertain.
The warning part of this is that CLL carries a much higher risk of skin cancers. So please protect yourselves and if you see or feel anything suspect on or under your skin get it checked immediately.
I have a face to face appointment at Marsden Friday where I hope they will come up with some option for me.
Ronnie.
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Thank you for taking the time to warn others about the dangers of skin cancer to the CLL population while you are dealing with your own difficult situation. This says a tremendous amount about you as a person.
Please stay strong and don’t lose hope. Modern medicine is amazing.
Hello, I too had a SCC removed from the bridge of my nose last July, they said they got it all, it remains very itchy and there is a scar. I have been in remission for 5 years from CLL, but now that is over, I wrote on here that a couple of weeks ago bruising had started again, well the dreaded CLL is back, so in the last few weeks, I have had blood tests, a c.t. scan a covid test and am waiting for the dreaded Bone Marrow Biopsy, I would love now to have it, but after discussion with my doctor whom I had never met before, said he needs it done, I said o.k. last time I had tablets and entinox, this time I am having a general, to say I am scared is an understatement. Its been five years on, a lot has changed since the last time, my circumstances have changed, I am my husband's carer (M.S.). Doctors however have not changed, its your good or bad luck if you get one that is understanding and actually looks at you when they speak, these days with masks etc, and hearing problems its all very hard to communicate. I am also allergic to the drug Ritiuximab, so last time I was on FCR and a course of injections into the tummy. This time he is talking about Imbruivca. I heard that is not too good for the skin which I suffer from as I have a genetic skin disorder which is rife at present, it is of course non contagious.Sorry to rant, hope everyone gets the results they want to hear.
I’m sorry you have had a rough go of it lately and are moving toward treatment again. I’ve had one round of treatment three years ago and I know the possibility of starting another treatment again isn’t too far off. So I can understand your apprehension. Also, providing for your husband while dealing with your own health problem is taxing both mentally and physically but I’m sure he is grateful for your care and kindness. Please try and stay positive.
The good news is you are correct that the treatments for our disease have come a long way in the last five years. Your next treatment will likely be as simple as taking a pill once a day and it will likely put you in remission quickly. I know you are in the UK so I’m not certain it is available but you might want to ask your doctor if acalabrutinib (aka Calquence) can be substituted for Ibrutinib. This is a second generation BTK inhibitor which tends to have fewer side effects than Ibrutinib.
I used to see a dermatologist every six months or sooner if required until covid struck, then I was removed from the list and referred back to GP.It's taken me months of fighting to get a response and this was by a 2ww for suspect skin cancer by GP otherwise I would've gone into a list without any possible date of being seen!
I've just posted about the removal of a keratosis horn last Friday.
I’m really feeling for you with this concern because having had such intensive treatment, you had every hope that it was sorted. I really hope the Marsden has some great options for you and your post is invaluable in reminding us all of the hidden dangers of skin cancer. I know my melanoma took me by complete surprise as a sunbathing novice but I’m afraid the CLL does seem to create an immune dysregulation that leaves us vulnerable.
Thinking about you and please update us on your progress.
Sorry to hear your news. I’ll keep a couple of fingers crossed for you.That was a very thoughtful warning post..
We are the CLL community. We have immune compromise. Secondary cancers are more likely and higher risk..
Our need to advocate/argue for ourselves is so important:
- get our primary care marking our computer record “immune compromise”
This to get all our infections, no matter that we might present with confusion.. get them escalated appropriately for our immune risks.
- skin / dermatology appointments and care..
Get twice yearly all over skin examinations, the more so through the year after treatment.. and try to get easier access to dermatology specialists whenever we have a skin concern.
Maybe our haematologists can sometimes help make this happen, or examine skin worries if they coincide with haematology consults.
Ronnie,I dont know if you remember me responding to your origional posting of the SCC. As a refresher, my brother had surgery to remove the SCC tumor on his parotid. Like yours, his was aggresive and his actually grew while being radiated. It grew back after surgery to remove it to the same size as preop. It then moved to his lung and one of his ribs. He had radiation on those spots as well.
The game changer was when all radiation treatments were done. They started him on Keytruda infusions. Thats when the the SCC started to dissapear. Over the course of a year all SCC vanished .
Its been about a year since last infusion and all scans are clear. Bloods have returned to normal.
At the end of the Keytruda infusions they added cetuximab. He only had a couple infusions of that as they stopped treating him early because of a leg wound that would not heal.
So in actuality they stopped the keytruda early too. The supprise was that it did not regrow after treatment stopped.
Again, the SCC grew while being radiated. That was written in his chart. But that keytruda was a real game changer for him.
Hope this helps and if you want me to dig up any info from SCC treatment history let me know?
Keytruda is an immunotherapy that uncloaks the cancer cells so TCELLS can destroy the cancer. We have a bcell cancer not a tcell cancer.No, my brother did not have CLL. Keytruda was used as a mop up after surgery and radiation in my brothers case. But watching his chart closely I saw the impact Keytruda made.
Surgery did not remove all my brothers cancer on the parotid as it was wrapped around the optic nerve. After surgery it grew back to its origional size and larger. Even while undergoing radiation.
Keytruda blocks the Pd-1 pathway. So if I recall correctly you have to test positive for the
pd-1 with your SCC to be qualified to take keytruda.
So if your scc displays the pd-1, why wouldnt Keytruda work? We CLL patients take immunotherapy drugs now more than ever. Thats with compromised immune systems!
Great conversation for you and your oncology team.
Ronnie, very sorry to hear that your SCC has returned after all that you have been through already. The replies above have said it all, but I will be thinking of you and hoping that the Multidisciplinary Team will come up with another treatment for you.
Thank-you for pushing the message about how dangerous skin cancers can be. Many people think SCC is just a surface cancer that can be easily cut out. But it can be every bit as dangerous as melanoma, especially in people with CLL.
Stay strong, and have faith that they will find something that will help, like maybe Keytruda as Pacificview says above.
No I am not particularly fair skinned. I have always tended to have a rosy complexion. I haven't spent an inordinate amount of time in the sun. Since I retired perhaps more so - just doing outside jobs in the garden and the like. The damage will have been done in my youth when I admit I didnt use much in the way of sun tan barriers on my face. At the same time though I was never a sun worshipper. If it wasnt for CLL weakening my immune system I doubt if this would have happened. I was diagnosed with cll in Dec 2006.
It wasnt detected visually. I had Venetoclax and Ritiximab started August 2020 due to swollen lymph nodes left and right in my neck.The treatment reduced the left side swollen nodes but a clump on the right persisted. So treatment was stopped (and still is) and a scan revealed that the swollen nodes were in fact SCC which had spread from an earlier surface area of my cheek which 1 year previously had been excised. The cancer came back there - in my parotid gland -and spread to my lymph nodes.
I had a neck dissection in Dec 2020 followed by 6 weeks RT. I found a lesion 4 weeks ago on my left cheek and this was cut off 2 weeks ago and they are confident the SCC was removed. But I also felt this pea size lump in my neck in the surgery area and brought it to their attention. A scan and biopsy has revealed it to be SCC. So it has grown despite RT and therefore is very aggressive and is likely to pop up in other places. Hence incurable and as it is on the exact spot of surgery so probably no surgery possible. Those are things that will be discussed with me later this week.
I have appreciated the warnings about skin cancer on this site, so went to a dermatologist for a check up. There were two smaller problems that could be treated by freezing and a larger on that required a biopsy. Fortunately that came back as not cancer, so it will be frozen tomorrow. I was lucky, but would also suggest strongly that members who have not been checked do so.
Here's hoping that it turns out well for you, Ronnie.
I wish you the best and I thank you for the reminder. I have had a reminder myself recently with more evidence of actinic keratosis. These are not moles, they are slightly discolored rough spots that don't look worrisome but are precancerous (squamous) and need treatment. They usually appear where there is sun exposure.
Quick update. I am seeing my original surgeon Friday. He will outline the risks v benefit of more surgery vin the same place. The cancer is RT resistant and I am also being referred to a medical oncologist to discuss any possible treatment to control it. But no one in any hurry to do so as at the moment it is just that small node that is troublesome so like my CLL I seem to be back on that watch and wait system.I have a phone call today with haemotoligist to see how my CLL bloods are. Fingers crossed they are still good.
Do hope that all goes well with your original surgeon on Friday and hope that your bloods are ok.
I was recently diagnosed with skin cancer and am waiting to have surgery to remove the tumour. Hopefully it will be soon. This is now my third cancer, CLL being the first, followed by thyroid and now skin. I also had bilateral blood clots in the lungs last year, which I'm told were a result of CLL.
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