Hi friends, it's been awhile since I've posted here. I've been in remission for 3 and a half years. First treatment was Ibrutinib for one year then Obintuzimab and Veneteclax for 2 years. Just to give you an idea of what my treatment was.
So my question is, if you too have been in remission, besides blood tests every 3 or 6 months, what tests are standard? A PET scan, bone marrow biopsy?
Wondering what your experience has been. Have you had any follow-up?
I'm concerned about secondary cancers and want to be proactive about my remission. Thanks for reading.
Lorna
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lorna222
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I do a mole mapping, and take cell phone pics of suspect lesions. That way I know the dates, and how things look.
No one usually gets a PET for monitoring unless on a study, or there is "something" in your history your doc wants monitored. Same for bone marrow biopsy; unless there is a *reason* it's not usually done outside a study.
I just try to take myself to a doc sooner rather than later with any concerns. I once had a skin infection I noticed from cell phone pics within mmm 48 hours. I also once had a UTI that when I had pain/burning on urination more than once after waking, I called that day to arrange an appointment, I didn't wait a few days before making an appointment.
The days of waiting a week or so to see if things "get better" are gone for me. I will go after 48 hours nowadays, especially if it's just before a major holiday. Better to pay a few copays than risk having something turn serious.
Oh, I also *always* ask for culture & sensitivity for suspect infections. That UTI was resistant to the first antibiotic they put me on; I was on the correct med within days instead of waiting a week or more to say "it doesn't seem to be working".
That skin infection was a MRSA, and I got it seen so quickly/cultures done, I didn't have to be hospitalized the week before Christmas.
I also had a viral cold, and made an appointment to be seen after tasting blood coughing. I had a few monitoring appointments, to make sure a bacterial infection didn't settle in my chest.
Another time I had a cough/cold, a CT I happened to be having for a study, got me sent to a pulmonologist with some suspicious results. It turned out to be stuff in the air irritating my lungs, and I had appointments to make sure it cleared up & wasn't an infection or Covid or lung metastasis/cancer.
So it's a pain to run get tests, but IMO it's worth it.
When I get a CBC with differential, I also get a Complete Metabolic Panel done.
Thanks for your comprehensive reply. I've just stopped venetoclax (VO, second tx also) and I'm hoping to regain some resistance to the frequent infections I experience. I appreciate hearing how vigilance has paid off for you.
You may want to consider asking about getting immune globulins & possibly T cell levels checked. If they are abnormal, something might possibly be done to help mitigate frequent infections. This may be done through your hem-onc, although perhaps an immunologist like Poodle2 uses, is a better person if you are getting frequent infections.
Or perhaps an Infectious Disease consult. After my original MRSA, I had some problems with minor reoccurrence. I had a single consult, she gave me some things to do (Hibiclens showers & to clean frequently touched surfaces with it, mild bleach baths) & I finally cleared the bug from my environment.
Morning - you are right up my street. It’s all about getting to see right doctor and I am usually told it isn’t anything. Then symptoms disappear, then fine back. Currently have a niggling sore/not sore throat. Apparently it isn’t anything. Sometimes I can see it’s red, sometimes it isn’t. I should be called Miss Spasmodic!
Thank you for your detailed answer! So many times I think it's just me. All of these replies reminds me I'm not alone in this CLL journey...and sometimes roller-coaster. I will take your advice and continue to be vigilant with my health and the follow 🙃 ups.
Hi Lorna, great to know you are still in remission. I finished V+O last year in June. Just like SofiaDeo said, I started to see a dermatologist - had my first appointment last year in August and will continue with yearly appointments for now. I also don't wait if/whether things improve, if I don't feel better within 2 days, I contact my GP. I also see an immunologist 2x a year, it started due to my repeated infections prior to starting treatment, but they have been great. They wrote to my GP and urged them to always take a swab and test phlegm if I have a respiratory infection. They also advised them that I would need stronger and longer course of antibiotics for any respiratory infections. Hope your remission continues🤞🏻❤️Petra
That is fantastic. I wish you continued success with your remission.
Of course your your medical team wil determine your updates on blood labs (every 3-6-1yr.?). Those are essential. Your own care, use lots of sun screen, hydrate well (water lama great app to help monitor). Be very aware to recognize your own feeling of health. We are our best judge of how we’re doing. Don’t get paranoid but don’t ignore changes when you feel them.
I’m also in remission. It’s 18 months now since I finished my treatment, I was on Ibrutinib and Venetoclax.
I was on a 3 monthly clinic visit up until April this year when I was told next appointment was in 6 months. I had just been getting blood tests and recently another bone marrow test.
So along the same lines as yourself. They have warned me regarding a secondary cancer especially Skin Cancer as I spend a lot of time in Spain.
I have other issues and the good weather in Spain helps with that. But I’ve to be aware of the Skin Cancer threat so I just make sure I cover up as much as possible and use sun protection cream on all bare skin.
But it is great that the CLL is not active at the moment and I can start to enjoy life again.
Hi Dav, thanks so much for that info on tests. I have asked my oncologist for a PET scan, but he said he saw no reason for one. I get it BUT also want to know where I'm at in remission. Having read replies, it looks like it depends on the Dr.
HiI have been in uMDR remission for 3 yrs. Was diagnosed stage 4 and treated immediately with O+I then twice daily Acalabeutinib. I have monthly bloods .. FBC, LFT and renal, plus CRP and GAM. I also have uMRD flow check done every 6 months. All relatively stable.
I had to stop Ibrutinib 4 1/2 years ago due to afib side effects. No treatment since. My hematologist examines me every 4 months with a review of my labs including IgG levels. I did receive immunoglobulin infusions every 4 weeks at the beginning of my remission but it was decreased to every 8 weeks which includes labs. The B cell clonality test was ordered at my last appointment with my hematologist. I have not been given the results yet. He did notice a slight increase in the size of my lymph nodes and mentioned that he might order a CT scan.
As for other cancers he referred me to a dermatologist to monitor me for skin cancer. So far none found.
I suspect none of the tests you listed are standard and only use depends on symptoms. I have had multiple PET scans, CT scans because of suspected ET which include massive internal lymph nodes and very aggressive CLL. I will have abdominal ultrasound in couple of weeks due to raise in liver enzymes. Once again, not routine but due to my symptoms. We are blessed to be monitored frequently for any signs of relapse or additional cancers. I also see dermatologist one a year.
Hi Big_Dee,It's very interesting to read everyone's experiences with our CLL maintenance and how it varies. I know it's complex since we're all so different. What is ET?
Sorry, I should have spelled RT out. It stands for Richter's Transformation. Which is a very fast-growing Lymphoma. I can understand why you did not know what ET was, it was typo.
My husband has been in remission this July for 4 years. He has a blood draw every 6 months. He had 4 treatments of Odintuzimab, Veneteclax for 12 months and Ibrutinib for 18 months. He's doing great. No extra tests. We are mostly on a plant based diet and take some extra supplements. Congratulations on your remission.
Hi I have been in remission 3.5 years now Ibrutinib/Venetoclax Get blood test every 6 months plus UMRD checks every 6 months I see my dermatologist every year Since the trial some Chronic bronchitis has been in the picture I see a pulmonologist every six months now and he has diagnosed me with Asthma variant cough I don’t have it all the time just at certain times of the year and not at all bad It is so great you are in remission Best to you !
Hi Lorna - good to hear that you are in remission. I guess everyone's experience is different - here is mine (briefly) in the UK:
Diagnosed Autumn 2011 - rapidly developed and so chemo in Spring 2012 (bendamustine and rituximab chemo - it has other names). That dealt with the CLL - very good blood and BMB results - but about a month after chemo, got a spot which rapidly developed into a nasty and very big (by the time it was removed) lump on my nose - a squamous cell carcinoma. So, skin cancers are for sure something to watch out for - as are bowel cancers. Both seem more likely for CLL sufferers.
I am still tested every 6 months for any blood indications that the CLL might be coming back - fortunately, even after 12 years remission continues - and I was followed up for 5 years after removal of the skin cancer, but that ceased since it seemed gone for good.
I always stay out of strong sun, and/or use factor 50 sun lotion if I'm going to be in it at all - no matter if it's only for a short time. Hats are used, as are sunshades!
So in your case - don't over-worry, but stay cautious and alert. As others have said - any concerns, see the doctor. With any luck it'll not recur, but better safe than sorry.
lorna222, I have an appt scheduled for a ClonoSEQ Blood test in July to test for Minimum Residue Disease (MRD) and find out if I am MRD negative or MRD positive since I just recently went into remission for Multiple Myeloma. I have both CLL and Multiple Myeloma. I'll also be able to find out the status of my CLL. The test is covered by insurance and Medicare. I'm including the link to the manufacturer where you can learn more about it. clonoseq.com/patient/chroni...
You don't have much time. So, try to learn as much as possible about the ClonoSEQ MRD blood tests before you talk to your Oncologist tomorrow, since many Oncologists are not familiar with it.
One way to find out if your Oncologist may be aware of the ClonoSEQ test is to go to the Manufactures website and enter your zip code to see if your Oncologist is listed. I included the link below.
If she/he is listed as a provider then you can take a list of questions you have and obtain all of the answers you need. If she/he is not a provider, and you decide to take the test with another Oncologist who is a provider, they will require your medical records.
Unfortunately, my Oncologist does not offer the test. I will have to drive 80 miles round trip to get it, but I feel it's worth it. I hope everything goes well tomorrow. 😊
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