Mds - the most common side effect of radiation

[Kshiprakapoor]

Hi all,

We got to know my father recently got mds and its the most common side effe t of radiation in prostate cancer treatment. We are feeling so lost now, as 3.5 yrs back he got trsticals removed and 3 yrs back his radiation done, since then hemoglobin started to be low like 8, we were every month asking doctor in the followup he asked us to focus on low PSA rest all is fine. Mds also grows slowly like prostate and earlier diagnosis could have delayed mds aggressive stage for more years. Now hemoglobin starts reaching at 7 and need blood transfusion every 2 weeks we got comprehensive test done and got to know luckily we came to know 4 months before blood cancer start and can have everymonth min 4 months mini cemo cycle done to stop progressing it. We were so happy earlier as his prostate cancer treatment worked very well due to radiation and we were hoping for reaching 10 yrs survival mark and now this has happened which shows 1 Yr or 2 Yr or 5 Yr survival mark. Just wanted to share to feel positive from this group encouragement and also to highlight about mds so no one else suffer due to this again if such symptoms exists can get it tested.

[LearnAll]

Sorry to hear this bad news. Thanks for sharing. Hope your father does better soon.

[Kshiprakapoor in reply to LearnAll]

Yes hope is there, we are believing he can overcome this also as many survivors for the same are there in the world. Just praying for the best

[George71]

very sorry to hear --- can someone tell me what Mds is please.

[Kshiprakapoor in reply to George71]

Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. MDS is considered a type of cancer. Pre leukemia stage,

[George71 in reply to Kshiprakapoor]

Thank you Kshiprakapoor,

I'm really sorry about your dads condition -- hopefully there is a treatment that can help or reverse it.

[Olivia007 in reply to Kshiprakapoor]

Did he have a bone marrow test?

[Kshiprakapoor in reply to Olivia007]

Yes, blasts show 10

[Olivia007 in reply to Kshiprakapoor]

Ok there is always hope just keep him strong and continue going to all doctor appointments and labs. Make sure you do the labs to make sure his RBC are good. Prayer for your dad. I know how it is I take care of my dad.

[Kshiprakapoor in reply to Olivia007]

Yes keeping eye on rbc thanks seems you also know so much about this, is it via personal experience too?

[Olivia007 in reply to Kshiprakapoor]

My sisters mother in law had it done she was having fainting spells and fatigue she is 90 but never had any health issues her whole life until a few weeks ago. So that how I know unfortunately from personal experience.

[cesces in reply to Kshiprakapoor]

What are all the other abbreviations you use?

[dadzone43 in reply to Kshiprakapoor]

thank you for clarifying this term.

[treedown]

I am sorry what he is going through but it is clear he is blessed to have you and your love. If only that everybody in this world were so blessed.

[Psychmed]

We all try to think positive but sometimes it's hard. Sorry about your father.

[Bodysculpture]

So sorry to hear about your dad

The good news is he is still with us

There is a chance

Bless you for stepping up

I will keep your dad in prayer

[Kshiprakapoor]

Thank you so much for kind words and prayers, this group has been a blessing with positive support since last 3 yrs. Yes you are absolutely correct there is a hope, God is helping and being kind.

[Bethpage]

Here is another story like yours. My husband had laparoscopic robotic surgery in 2014. All biopsies since 2003 (all TRUS) had been negative, but a tumor was found in post-surgery pathology. PSA rose slowly post surgery. A well-known surgeon in Orlando said he could "get it all" with salvage surgery, so in 2017, my husband had that second surgery. PSA barely dropped, so yes, he had BCR. The surgeon and his fellow MO wanted to locate the BCR before radiating. So at PSA 0.8, my husband had the Axumin (radioactive isotope, found nothing), then a trial called the C-11 acetate (also radioactive, also found nothing), then the F-18 DCFPyL (radioactive, found the reoccurrence), the Ga RM2 (radioactive, found nothing), then finally the C-11 choline (radioactive, also found the reoccurrence). After find the reoccurrence, he had 39 radiation treatments during the summer of 2019. In January of 2020, he was diagnosed with CLL (chronic lymphocytic leukemia), also a blood and bone marrow disease where his Hgb has dropped as low as 5.1. He has to have a transfusion every week. We get no answers about whether his Hgb will eventually recover, but meantime, he has a chemo treatment (bendustamine rituximab) every month. The chemo costs him a full month of recovery. The medical oncologist and the CLL specialist have told us that this new cancer has nothing to do with the radiation, but my husband and I both doubt that statement. My best wishes to your father, to you and to your entire family.

[Kshiprakapoor in reply to Bethpage]

Yes you are right it is side effect of radiation it's clearly mention on Google article which we saw recently n we kept asking doctor after 40 radiation his hemoglobin started coming low since 3 yrs he kept telling us everything is OK and nothing to worry as long as PSA is low. What was our mistake, nothing. Wasn't it doctors duty.

[Bethpage in reply to Kshiprakapoor]

Every one of the 5 researchers or institutions that administered the radioactive scans assured my husband that the amount of radiation given was too minimal to cause any adverse reactions, much less another cancer. Our medical oncologist did tell us this past week that my husband's inability to maintain hemoglobin levels was most likely caused by the 39 treatments to the pelvic bed. It's the first time since March that he has admitted any cause/effect relationship between radiation and CLL. It was an infectious diseases MD who first told us that she thought that my husband had CLL and that it was caused by the radiation. It's heartbreaking. I'm sad for you and for us.

[Kshiprakapoor in reply to Bethpage]

I agree when it clearly says MDS is one of radiation cause why can't doctors tell us clearly when it starts and answer our questions. What do they get out of it, it so sad to see doctors behaving like this, treating life as a commodity. May be early detection could slow down this more further with some non aggressive treatments, I am so lost now and we all are trying our best. Sending hope to you as well, above all there is God, till God wants everything will be okay.

[Bethpage in reply to Kshiprakapoor]

Kshiprakapoor, would you happen to still be able to access that article which you saw on Google? Or perhaps did you keep the link and would you be willing to guide me toward it? I'm really interested in reading it. Thank you!

[Kshiprakapoor in reply to Bethpage]

cancer.org/treatment/treatm...

[Kshiprakapoor in reply to Kshiprakapoor]

ncbi.nlm.nih.gov/pmc/articl...

[Kshiprakapoor in reply to Kshiprakapoor]

There are many more articles, before radiation my father's hemoglobin used to be 12. 5 after 40 radiation it started to be 8, we asked doctor so many times during our monthly follow up visits but he used to say everything is fine just focus on PSA,

[Bethpage in reply to Kshiprakapoor]

I will read all of these. Thank you. Your father's road is similar to my husband's. At one point, his Hgb was 5.1 and he was hospitalized. He had an in-hospital transfusion last week. His Hgb went to 8.1. This past Monday, it was already down to 7.7. We were focusing on PSA as well. I guess that we had no choice. Thankyou, Kshiprakapoor. BTW, I have followed you.

[Kshiprakapoor in reply to Kshiprakapoor]

aamds.org/support/helpline I came across this and attending webinars or trying to see if I can connect with them and if this can be helpful, let's be positive and believe in God , definitely there will be a way out , there are many survivors to this and doctors in USA are working towards its advance treatment,

I attended this just few hrs ago see if it can help you, this trial medicine is not available in India yet but yes in US you can also email them at [e-mail] they mentioned during the webinar aamdsif.salsalabs.org/2020n...

[Kshiprakapoor in reply to Kshiprakapoor]

aamdsif.salsalabs.org/2020a... this one about caregivers or how to be a survivor coming on 3rd Oct, if you cant attend live can see recordings ,

[mcp1941]

I also was DX with CLL about 5 years after radiation treatment for PCa. My doctors kept an eye on it for years and I never needed treatment for it but I was DX last year with Multiple Myeloma. Both are blood cancers They found some CLL cells in the biopsy of the MM plasmacytoma. I went thru induction therapy followed by Stem Cell Transplant to treat MM. Excellent results. No proof but I feel that both CLL and MM are the result of radiation treatment.

MikeP

[Kshiprakapoor in reply to mcp1941]

Stem cell transplant at what age? Age plays an important factor to go for it as per our hemotologist

[Kshiprakapoor in reply to Kshiprakapoor]

Also 3rd month mini cemo will start doctor said 6 needs to be done before transplant decision. His blast count is reducing which is a good sign of treatment working

[mcp1941 in reply to Kshiprakapoor]

I was 78 years old last year when I had the SCT. They had a cutoff age of 60 at one time then changed it to 65 then to 70 then dropped age as a factor altogether in determining eligibility for SCT. I also have heart disease (6 stents and A-Fib) and Type 2 diabetes.

MikeP

[Kshiprakapoor in reply to mcp1941]

My father will be 68 this dec, doctor has said no for transplant due to age factor, Jan his mini cemo wil be completed then will wait for next direction

[mcp1941 in reply to Kshiprakapoor]

Unless your father has serious comorbidities I don't see why age should be a factor. One of the doctors on my MM team was reluctant to give the go-ahead but he was overruled by the team leader after I received cardio clearance for SCT from my cardiologist I also had the benefit of being treated at a major cancer center where they perform SCT every day. Please let me know if you need aany more info.

MikeP

[Kshiprakapoor in reply to mcp1941]

We will check with doctor again in Jan once cemo cycle is complete, he just got prostate cancer 3.5 yrs back, rest he has no other disease - luckily no diabetes, no heart disease, etc. Hoping for the best. Good to know about your positive outcome, this gives more positive energy and hope, yes please tell me the name of major sct center, so we can look into it. Also how did you get the donor plus was it matched or unmatched donor?

[Bethpage in reply to mcp1941]

MikeP, do you mind saying where you had your SCT? SCT was one of the questions I had for my husband's oncologist last Wednesday, but in 15 minutes, he talked too long and I couldn't get any questions about SCT in. Thank you.

[Kshiprakapoor in reply to Bethpage]

I am also interested to know this please

[mcp1941 in reply to Bethpage]

I had SCT done at the John Theurer Cancer Center at Hackensack Meridian Hospital in Hackensack, NJ. My 2 week semi-isolation period was at the main hospital. For me the worst part was the awful food. My wife would bring me some edible food almost every day. The JTCC is an excellent facility as well as the main hospital. I also have my prostate cancer treatment at JTCC.

[Bethpage in reply to mcp1941]

Thank you so much. My husband is 77, will be 78 in December. His CLL is apparently aggressive. He's 98% deleted 13Q, 33% deleted 11Q, neither mutated. CLL specialist at Mayo JAX and local MO say that ibrutinib and acalabrutinib work too slowly for him, so he has done 2 cycles of BR. First was tolerated, second he had a reaction where he looked like he walked leisurely through a pizza oven. That was followed by a week in the hospital. His Hgb won't hold, so he's having transfusions every week. ANC can't climb because of the BR. When I ask about SCT, the answer is inevitably "too old." He was in the best of health, never needed so much as a Tylenol, until treated for prostate cancer. I really appreciate the info - more than you could know.