The doctors tell us that you don't die from CLL; you die with CLL. What they don't tell you very often is that even though it isn't the CLL that gets you, it could very well be a secondary primary malignancy caused by the CLL that does it.
Bennevisplace wrote on this a few months ago; i.e. the fact that we are considerably more likely to develop other cancers than the general population.
In my case, it was a skin cancer on my head which was excised via MOHs surgery. Biopsied as a pleomorphic dermal sarcoma and, it was thought, fully "cleared". Unfortunately for me, it metastasized to my lung nine months later. Thank God that when the cancer was removed from my head, my CLL doc was wise enough to book me with a good sarcoma guy for follow up which included a CT scan every three months. It was on one of the routine CT scans that the devil showed his face.
So now I'm taking immunotherapy via the drug Keytruda, widely advertised on U.S. television. The sarcoma doc's logic is that if the cancer could metastasize to my lung it could be headed elsewhere too so why not let the immunotherapy go after it wherever it is. Apparently my profiles are pretty good for using the Keytruda. I've gone through four cycles of infusions so far, with a PET scan scheduled for Monday which will be compared with the PET scan done at the beginning to see what's happening. I have a prayer army working for me with great trust in the Lord that no matter the direction this thing heads, everything will be alright in the end.
The moral of the story is that even if your CLL is well under control, keep your eyes wide open for other potential problems.
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hhk50
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Wow, sorry to hear about the secondary cancer, but happy you have great doc(s) that enabled you to find this critter in a timely fashion! And in the age of immunotherapies, too, so that stamping this out wherever it may be in your body is more likely to occur! Love that your sarcoma doc is thinking "outside the box" and using the newer drug tools that have been developed.
My CLL has been kind of in remission for about 18 months. No meds and stable numbers.
I was put on Keytruda in late 2022 after several meds in sequence for my St 4 Metastatic Prostate Cancer
On Keytruda my PSA immediately dropped to 0.10 and my prostate is now soft and round as it should be. By the way Keytruda can be dosed every 6 weeks which really frees up your lifestyle
Recently after a scan I’m having some Node growth. Biopsy results tomorrow.
Thanks for the good news about the Keytruda. Six week dosing would be a blessing because the 3-week schedule keeps me on a pretty tight leash. Let's hope that your node growth is not significant. Sounds like you've got some pretty good docs too and they will be able to deal with whatever comes up.
absolutely. I now have three acute leukemias that just reared their ugly heads this past January after 9 years W&W with CLL. Lots of luck to you! Sounds like your docs are on top of things !! You are lucky to have good doctors!!
I am joining the the Prayer Army as I too am a member of one such group called the Prayer Warriors. All of this can get so out of control at any given time and we have no control over any of it. We must seek the good doctors, be our own advocate and remain as positive as we humanly can!
You will handle this and you have the support of many!!! All he very very best to you and please keep our community posted on how things are with you….as we are here and care for you!!L
Thanks, Panz. The way that the Keytruda works is that it breaks through the cancer's protective barrier against our body's natural defenses, thereby allowing our T-cells to attack and defeat the cancer. I am convinced that God is using the prayers of my Mighty Men and Women to supercharge the T-cells and give them extraordinary power to overwhelm the cancer. But, in the end, His will, not mine.
Hi HHK,Keytruda is a checkpoint inhibitor that enables our Tcells to see the cancer and go after it. If keytruda quits working. There is a immunotherapy drug that was just approved for Bladder cancer by the FDA, its called ANKTIVA.
The next indication that ImmunityBio is seeking approval for is NSCLC. Drug trials proved that ANKTIVA rescued Keytruda when it quits working. Keytruda typically only works for a period of time. Before the cancer pulls back its Tcell receptor. Which removes keytrudas ability to work. But, keytruda with Anktiva turns back on the Tcells ability to see the cancer. Doubling the time that Keytruda would normally be effective.
Thats the good news, the bad is that its not approved yet for NSCLC, So you would have to ask for it off label for now. Or seek out the phase 3 trial currently ongoing.
If I were taking Keytruda which works great. I would want to know about Anktiva.
You can go to ImmunityBios website and learn about it for NSCLC.
Thanks very much, Pacview. Not only is this of interest to me, I consider it an absolute gold mine. The first step is my PET scan next week to verify that the Keytruda is doing its job. This will be my first checkpoint since I started the therapy four cycles ago. I really appreciate your help. Please let me know if you hear anything new.
Thank you for the forthright warning. I think that it's easy for us to put the cruise control on and coast our way into an emergency.
I just confirmed an appointment tomorrow for a skin check even though I'm not due until October. I have what I thought and still hope is a sunspot. But it's not aligning with the ABCDEF, and has raised and dipped surface and asymmetry looks like a fat trident/three toed footprint.
I didn't know until last night that weeks are too long to wait for a melanoma.
Hi, I wrote posts on secondary cancers. You may want to check them out. Worst case you don't find anything of interest in them and you'll have wasted some time.
Thankyou for your sharing. And keep up the great work my Christian friend. Prayer armies are wonderful. When did you first get your CLL diagnosis? Thankyou again!
Thanks for your encouragement. The CLL was diagnosed in 2013, and treatment with Ibrutinib started in 2018. The ibrutinib works well at controlling the CLL with only some nuisance side effects. Interesting, though, how our focus shifts - I don't pay much attention anymore to the CLL now that I'm dealing with the sarcoma.
Thank you so much for sharing your experience here, tough as it's been. It is indeed a valuable lesson to us all to "keep your eyes open for other potential problems".
Becky - thank you. I give the medical community a lot of credit for what they do for us, but never forget that they are instruments in God's healing process. He cures by medicine or miracle but, no doubt, He is the Healer.
I'm very sorry you are going through this. It's also a reminder to me to do a better job of watching what I eat and moving more to prevent cardiovascular issues.
I have had three SCC’s removed. Every six months I get a through skin check at my dermatologist. I highly recommend doing this if you are able. I never had a problem before CLL.
Hi - yes, in fact, if you look at the keytruda.com website you will see long list of cancers that are being treated with this drug. And I am sure that there are many others being treated that are not on the website list. For example, the sarcoma that I have that has metastasized into my lung has not yet been approved by Medicare. However, Merck, the manufacturer is paying for the drug because they want to build up data on the various successful applications for their product.
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