Does anyone have CLL and MDS?

[DaveCll]

I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica at 140 mg I changed Doctors they did a Bone marrow Biopsy and determined that I am a notch 1 mutation and because of the original treatment of Bendamustine developed. MDS. Was wondering if anyone else also developed MDS from having Chemotherapy treat for CLL?

[Marie-54]

I have FCR which ended Feb of 2018. My bloodwork just took a major tumble and doctor suspects MDS. My Bone Marrow Biopsy is this week. How long did it take you to get results and diagnosis?

[DaveCll in reply to Marie-54]

About two weeks. Just curious when there was imbruvica in 2018 why did your doctor give you FCR? The BTK inhibitors does the trick with pill rather then chemotherapy?

Dave

[AussieNeil Partner Administrator in reply to DaveCll]

Dave, Marie-54

healthunlocked.com/user/Mar... lives in Canada, which, like many countries, has been slow to approve the newer "Non-Chemo" targeted therapy drugs.

[DaveCll in reply to AussieNeil]

Thanks Neil. It’s a shame that Canada is so far behind.

Best

Dave

[Marie-54 in reply to DaveCll]

That was then. 2017. It is not 'so far behind' as you put it. Imbruvica and other forms are available.

[Amberesque in reply to AussieNeil]

I live in BC Canada and can confirm!

[Marie-54 in reply to DaveCll]

Because where I live, FCR was the first treatment given before imbruvica was considered. I started treament in 2017

[Imua in reply to Marie-54]

Where are you being treated in Canada? Currently looking for a hematologist in the Toronto area. Thanks.

[Bailey08 in reply to Imua]

Dr. Jonathon Wilson is a hematologist in Toronto. I believe his office is on Keele St. He’s a very kind man and I was his patient for about 10 years prior to moving east of the city.

[Imua in reply to Bailey08]

Thanks for the referral. I'm acutally in Oakville and there appears to be some sort of OHIP rule that I need to see one in my geographical area..at least according to Dr. Chen's office at the Princess Margaret. I thought Toronto was close enough. Anyway my doctor is referring me to one in Oakville, no idea if this person is interested in or understands CLL.

[lankisterguy Volunteer]

Hi DaveCLL,

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Here is a list of the 74 previous posts that mention MDS:

healthunlocked.com/cllsuppo...

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This post details the scientific data: healthunlocked.com/cllsuppo...

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I know that my CLL expert doctor has refused to use BR or FCR since 2010 due to his perception that it raises the risk of MDS. That is why I chose him and entered a clinical trial in 2012 for Idelalisib.

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Len

[DaveCll in reply to lankisterguy]

Thanks Len for all the information

[Priss69]

They finished diagnosing me with Myelodysplasia a month ago at the end of Venetoclax. I had been suffering from anemia for months and when I did a biopsy it came out. At the moment the injections they give me are not working and I am having transfusions every two weeks.

[DaveCll in reply to Priss69]

Did they discuss with you the possibility of stem cell transplant ?

[Priss69 in reply to DaveCll]

Now they are giving me injections but it doesn't work much. There are two more treatments and they say that I have few tumor cells but they don't know how it can progress.

[DriedSeaweed]

One thing to consider is that some people are just predisposed to MDS. So even if you didn’t have chemo beating up the bone marrow might impact that predisposition. Some people have a condition called CHIP and there is some concern that prolonged venetoclax treatment could push some people toward MDS. Just a risk we have to live with if we want to treat CLL.

I just got off the phone with a germ line study I signed up for at NIH and one of the genetic defects I have is something that suggests there is a chance I could develop monosomy 7 and MDS. I’ll have to keep an eye on future biopsies or ask them to check for it.

[DaveCll in reply to DriedSeaweed]

Did you have any childhood diseases that might have contributed to your predisposition to MDS?

Anyway just be positive.

Best

Dave

[DriedSeaweed in reply to DaveCll]

I don’t know how germline genetics work. I am guessing it is just errors in my DNA. There are probably other people here who understand better.

I went to NIH to see the myositis research group since I was getting focal myositis and fevers from GCSF shots. They asked me as part of their protocol if I would like to participate in this other study: niaid.nih.gov/clinical-tria...

I am not bothered right now. Certainly, I will be if it becomes a problem. My current CLL specialist basically did her PhD in genetics. She is being sent the results and will tell me if it is something to roll my eyes at or closely monitor.

Specifically, I have a defective SAMD9.