Hello
I recently read an abstract on 6 year follow up of Ven + Obin.
About 20% developed secondary cancers, half of these succumbed to these.
The abstract did not address what types of cancers nor recommend specific screening.
Does anyone have any DATA on
1. How this 20% compares to CLL patients in general.
2. Besides skin cancers ( I've had 13 since FCR in 2018). What other types of secondary cancers we get and
3. How and how often should we be screened
thx
Skipro
My hubby will be 1 year on O&V - just had a few spots frozen off his back and head - that' was it. He sees a dermatologist every 6 months for a checkup
To my understanding, because we have a cancer that causes immune issues, we are at some greater risk for many other cancers. The most common secondary cancers are skin cancers. People who have had chemo treatments for cll might be at greater risk of acute myeloid leukemia (AML) from chemo related bone marrow damage.
I think we should follow cancer screening guidelines for everyone our age, with more diligence. I see a dermatologist annually for screening. I have my PSA test for prostate cancer done annually. I will be doing colonoscopies every five years now. Mammograms are recommended for women.
One side benefit of having cll, I guess, is that we have regular bloodwork that can catch some other cancers early. Some of us also have had cat scans or other scans that look for cll nodes but might also spot another cancer early its not looking to find.
Here is an article with more specific info for you:
lls.org/leukemia/chronic-ly....
Thank you,
I was thinking I should get colonoscopy more frequently but my doc says I can only get one every 10 years.
How are you able to get it every 5 years?
Thx
I had a positive cologard test for cancer, which scared the hell out of me until I read up on cologard and the large number of positive tests that actually are not cancer. I followed up with a colonoscopy during which I had benign polyp removed. The doctor moved me to every 5 yrs due to the one polyp.
It might well be that cologard was positive due to that polyp, sho can say? I do think cologard is a low cost, non invasive screening test. You can do them every so often and if it ever comes back positive, I think you automatically are covered for a follow up colonoscopy under Medicare and most policies.
20% is pretty significant isn’t it? I’m 62 and will have V&O for my next treatment which is likely sooner than later. 🤔
The lifetime risk of getting any cancer is about 40%, for those who think we got a really bad deal of the hand with cll. The lifetime mortality risk for cancer is about 20%.
Thats not to diminish the increased risk we have with cll.
😥 this post has been on my mind since I read it. Having cll and the risk of a secondary cancer is enough to deal with, now there’s data on these medications causing cancer as well. This is so scary I’m fed up with all this disease and medications can cause😢.
I think I read that same report in the CLL Society. What concerned me was that the 20% rate for VO was significantly higher than the rate for CO, which uses chemo. I would have liked to seen that commented on.
john
Is this the report you to which you are referring?
cllsociety.org/2023/10/vene...
- 48 deaths were reported in the Ven-Obi arm, of which 9 were progressive disease (PD) related and 70 in the Clb-Obi arm (26 PD related).
- At six years, the overall survival (OS) rate was 78.7% in the Ven-Obi and 69.2% in the Clb-Obi arm.
- Second primary malignancies (SPM) were found in 30 patients who had taken Ven-Obi and 18 who had had the Clb-Obi; cumulative incidences of second cancers six years after randomization were 14.2% and 8.5%.
- Two Richter transformations were reported in the Ven-Obi arm and 4 in the Clb-Obi arm.
There is a list of the cancers by type and severity in tables 8 and 9 in the supplementary data in the CLL14 5 year study report in Nature
nature.com/articles/s41467-...
Of note, there were twice as many deaths (8) from secondary primary malignancies (SPMs) in the chlorambucil + obinutuzumab arm than the venetoclax + obinutuzumab arm (4). No particular SPM stood out. There were 216 patients in each arm.
I don't know if the difference in SPM rates and deaths is statistically significantly different, but I would expect that this will be an area of study in long term follow-up.
This reinforces the importance of following up any unusual health symptoms when we have CLL. The higher rate of SPMs when we have CLL is primarily due to how it suppresses our immune system including cellular (T cell) immunity, which would normally detect and destroy incipient cancer cells. Treatment further suppresses our immunity, but I thought venetoclax had more of a secondary impact on T cells than obinutuzumab.
Neil
Great review Neil! the published data is hard to read in these papers. Many thanks!
I agree with you, more follow up studies with more patients are needed to answer the question of secondary malignancies with these therapies.
My biological background tells me you are right to say that treatments specifically targeting B cells and don’t affect T cells are better. The reason is that CLL is cancer of the B cells and not T cells of our immune system. Is good to have the T cell part of our immune system as healthy and intact as possible. Furthermore, T cells are doing immuno surveillance and are responsible for killing early malignant cells in our body protecting us from secondary tumours
Many thanks
V.episkop
Neil
Thanks.
My goal was to see what I should be having screening done for. My NP hasn't given me any info on this.
I do get regular skin checks as I have had 13 malignant lesions, several of which required major surgery since FCR in 2018.
I follow my PSA closely.
I get colonoscopy every 10 years but wonder if I need more frequent colonoscopy than every 10 years?
I was hoping to see specific types of solid tumors to see if there were other screening that I haven't thought of. No one has palpated my thyroid ever.
Thx
wow thanks for your detailed reply neil. i'm way over due for a colonoscopy. planning to get both endoscopy and colonoscopy done in one go. only once under anesthesia that way. i need to get both done to r/o gi bleeding as a cause for my chronic anemia. this just underlines the urgency to get it done! i was waiting on the specialist office to phone me but i'll be phoning them on monday!
I had a colonoscopy recently, no anesthesia and no problem at all, just a bit unpleasant. No pain. Nothing to be afraid of.
good! my last one i had issues with the prep....sore bottom from going #2 so much after drinking a gallon of miralax solution. then afterwards when i was allowed to eat they said i could eat whatever i wanted. i had 2 scrambled eggs and a whole wheat english muffin with a bit of butter. omg i had intense stomach pain and had to call the on call doc. he dismissed me by saying no biggie take some maalox 
eventually i felt better but it was a horrible experience with the stomach pain. my take away is that if i have to fast/restrict my diet like you do for this procedure, i need to introduce foods gradually....start with jello, cream of rice cereal, saltine crackers then trahsition to regular food!
You can start with bone broth too. Warm fats are not recommended on the empty digestive tract.They can be laxative. 😀
thank you good idea!
Hello Bachplayer13
I'll share my experience with anemia and internal bleeding.. About one yr ago I was anemic with low iron. My PCP was certain I had an interior bleed and was referred for colonoscopy and endoscopy.
Co and Endo were negative but was followed by camera endoscopy ( pill cam ) for suspected arterial venous malformations (avm's) in the small intestine. The camera did reveal avm's, and in my case more than the GI doc usually finds in other pts. In brief avm's are small lesions of unknown origin, non cancerous, painless, and mostly occuring in older people. One or more of them can bleed at any one time and lead to a slow bleed. Large lesions that bleed more heavily have to be cauterised or at worst surgically repaired. Thankfully this is far less common.
Outcome for me is that I will need iron supplementation for life as avms do not go away. Early on I had an iron infusion but now take daily iron. I take VitronC, recommended by the gastroenterologist, and find it very tolerable to my system. Avm's do impact CLL treatment choices. BTKs due to higher incidence of bleeding complications are ruled out as a first choice option. As my CLL specialist said BTKs are not ruled out completely but treatment management will be more complicated with them. While I have not asked this question I suspect my downward trend in platelets in the presence of avm's may precipitate an earlier treatment due to platelets' role in clotting.
I hope this will be more informative than alarming to you.
Best of luck going forward.
Teddo
thank you so much i really appreciate the detailed response, knowledge is power and smart patients get smart care (CLL Society!) so i try to inform myself on medical conditions as best I can. I have so many health issues right now its hard to keep up with them!!
i did read something about AVMs but thought i'll worry about that if i have to.... on down the road.i'm also on a PPI for stomach issues chronically which i know can impede iron absorption. also take a NSAID every day for bad arthritis in my spine...these can also cause bleeding but i need the meloxicam my back is bad and the NSAIDS really help with this. good luck to you as well!
hi. I got colon cancer … but I listened to the doctors and had a colonoscopy so they discovered it pretty early. Surgery took out the tumor and then four months of chemo took care of the tiny rest. No fun but it’s gone
I am with CLl for 21 years on wait and watch. Five years back I was diagnosed with rectum cancer. Adjuvant therapy which includes 5 weeks radiation and 8 cycles chemo given . Cured completely. However six months back developed uterine sarcoma. Had hysterectomy total and chemo 6 cycles and 3 cycle brachytherapy.
Now under observation. Anyhow under close observation
I am impressed with your 21 year of W&W and glad your rectal cancer was cured. I am sorry about your uterine sarcoma and hope you are doing well now.
I am wondering whether those of us who have monthly infusions of gamma-globulin lower their risk for secondary cancers, since the immune system is strengthened by that?
In my case I have many pre-cancerous spots each time I go to the dermatologist which is at least twice a year. And on two occasions these had become cancerous and I needed an operation.
It would be nice if IgG replacement therapy reduced our risk of secondary primary cancer, but it's highly unlikely. That's because cancers are virtually identical to healthy cells, so would only be autoimmune antibodies that would help. Normally B cells that end up making autoimmune anybodies are suppressed by our immune system.
Neil
I agree Neil, IgG infusion does not protect us from cancer.
However, malignant cells are so screwed up that express non-self antigens and stand out! This the basis of immunotherapies…the following review is on immuno surveillance and how cancers manage to evade it.
ncbi.nlm.nih.gov/pmc/articl...
Vepiskop
Exactly; it's the cytotoxic (CD8) T cells (cellular immunity), as I mentioned above healthunlocked.com/cllsuppo...
Neil
PS I needed to correct your reference link. If now works fine
What report was that? Was that total including NMSC which are excluded from SPM results?
medically.gene.com/global/e...
Yes, numerically it's worse than the results shown for CIT for elderly/unfit that wouldn't have FCR but the next slide says the difference is not statistically significant, p=0.072, the criteria is <0.05.
CLL14 was for elderly/unfit patients, median age is now 77.
Living here in UK I’ve never seen a dermatologist, been on treatment for over 2 years now.
Dave
Dave,
As I understand in the UK we only see one if we have any issues. But if you think you do ask your CNS or Consultant. Certainly in my hospital there is a dermatologist that sees the CLL patients, but we don’t have the luxury of a yearly bodyscan.
Colette
Hi Mtk1, I had some skin lesions earlier this year and was referred to hospital dermatology cancer screening. Following treatment I asked if I should be having regular reviews. Their advice was only come when the GP thinks you have something that needs treatment.
Seems the ball is in our court but we will be seen within 2 weeks of referral.
All the best.
I had kidney cancer. This was after FCR, BR and Ibrutnib. Not sure there was any connection. I’ve had V&O twice since then with no cancer issues
Hi,
Sorry to hear about your kidney cancer! I hope it was cured.
How did you know you had it or what prompted you to get checked for it?
Thx
Skipro
I was in the hospital because of a severe allergic reaction to the Ibrutnib which manifested itself as pneumonia. When they did the CT scan of my lungs the scan went over my kidneys and they noticed the cancer on my right kidney. They performed a kidney biopsy and it was negative but many Drs said it was cancer. It took two months to get well enough to do surgery and they cut the cancerous part of the kidney out. That was 5 or ) years ago and I’ve had it rechecked several times and no reoccurrence!
Wow so 4 separate treatments?
May I ask about infection prevention
After the neutropenia from FCR recovered, I took NO precautions like masking. This was pre COVID and I never developed infection
My oncologist says V + O is not anywhere near as immune suppressive as FCR and that dying from COVID is extremely unlikely
But still recommends masks in public places????
There are some public places I'd like to avoid a mask in unless I hear coughing or sneezing or see runny noses?
What's your approach after all these different treatments
I’ve had five treatments with four different recipes. I’ve only been in remission once and it lasted less than 2 years
I never mask up but I avoid places with large numbers of people such as malls, church, theaters, etc.
FCR and BR were definitely the hardest on my body. After 6 months of FCR and 9 months of BR, I told my wife I’d rather die than do that again. Fortunately better treatments have been developed.
The last season of V&O didn’t work, only drove my immunity into the ground and I ended up in the Hospital for 12 days with pneumonia and RSV, 3500 miles from home. Friends flew to Alaska and drove my truck and fifth wheel home for me. I was too weak to do anything for about 2 weeks.
I have had both B+R and V&O treatments. I just finished my V&O treatment. I have had annual dermatologist for 4 years and also colonoscopies for my age group. As I have very aggressive CLL and had massive abdomen lymph nodes, I am a candidate for Richter's Transformation and as such have had several CT scans and PET scans. I am happy to report that I am clear of any cancer other than CLL. Sounds like we enjoy better than 50-50 odds of having a secondary cancer. Blessings.
For me.. I got breast cancer while on CLL watch and wait (for nearly 4 years now). And, it was naturally a shock and surprise.
The risk of a secondary cancer with CLL is 2.2x higher than the general population.
9.3% of secondary cancers reported are breast cancer. But only females (with few exceptions) get breast cancer, and more men than women are diagnosed with CLL. So, is breast cancer as a secondary cancer easily double that percentage quoted (in research) and therefore more like responsible for 20% of secondary cancers for females? A fair question right?
Do I have CLL markers that make me more susceptible to secondary cancers. I don't know. I only know I am TP53 negative, that's all, as I've not had access to the more sophisticated testing yet (in NZ).
As well as routine screenings mentioned, females need to keep up with breast and cervical screenings recommended. 👍
That is funny you would mention the need for continual Mammograms & Pap Smears. My GYN doctor retired & his young female replacement was telling me how I did not need annual screening since they have always been negative. I said well I had a partial hysterectomy at 34yrs old so its not been negative everytime, Plus my Mom was a 30yr Breast Cancer Survivor 🤷🏽♀️
We had a come to Jesus Moment🙌🏾 I went & checked with my Federal Aetna expensive insurance & they said that I was covered for annual screenings, my bottomline. Its so exhausting to explain the obvious🤦🏽♀️ So she got an accurate well deserved bad review on Healthgrades from me. She has since left his practice & they’ve been calling but I don’t know whether to go back there or elsewhere🤔
I also get frustrated with lazy Drs who don't bother to learn why you'd need extra precautions sometimes that are different from the general population. At the beginning of my journey I advised my GP during a visit I would need to organise annual skin checks. She looked at me and said "Why?" and I had to inform her that is general best practice for CLL as it is a common secondary cancer. She did not know that.
Breast Screening is every two years from age 45-65 here, and next year they are proposing to lift that to 74 years. (I will have annual screens for 5 years and then return to two yearly.)
Cervical Screening tests have recently changed here to a new test designed to detect HPV. The screening interval has thus been lifted from every three years to every five, with the following proviso for anyone immune deficient to remain at three:
"Cervical screening is now recommended every five years (or every three years if immune deficient) following a “HPV Not detected” test result for people with a cervix or vagina aged 25 – 69 years who have ever been sexually active".
Cheers
Secondary BR Treatment
CLL highly correlated to other cancers? 
