Wife New Diagnosis 45yo
December 15, 2020 at 4:35 pm #53809
My wife who is 45 was diagnosed three weeks ago with MDS. Over the last three weeks we have read a lot of information and still learning about MDS.
Here is a brief history of her issues. About 5 years ago she started having issues with her RBC count and Iron levels which were low and her WBC which was high. The Hematologist at the time would prescrib her Iron pills and would follow up with CBC every few months. This went on for about 3 years. Early on he mentioned a bone marrow biopsy but felt it was unnecessary due to her age so it was never completed.
Fast forward to 2019 and her family doctor sent us to a different Hematologist due to continued low RBC and no action from the other doctor. The new hematologist increased some of her medication and also ordered a couple iron infusions since the iron pill wasn’t increasing the levels. The infusion worked short term but the levels dropped again.
Then from October 2019 to October 2020 she had 4 or 5 NSTEMI Heart attacks and ended up getting 5 coronary stents over that time placed in her arteries. She ended up with a diagnosis of Coronary Artery Disease. In October of 2020 she was back in the hospital for chest pain. While in the hospital they became concerned with her RBC and Hemoglobin levels so they called in another Hematologist. During that visit her Hemoglobin was 6.9 and RBC was 2.85. They ended up giving her two blood transfusions during that stay. She has since had multiple CBC and the hemoglobin is staying around 8.0 to 8.8 and the RBC 3.06-3.45 with the WBC 14.1 -18.1. During this stay the hematologist at the hospital ordered a bone marrow biopsy.
A few weeks ago we got the results and were told she had MDS with 25% Sideroblast. Her latest results showed WBC 13.0, RBC 3.43, hemoglobin at 8.8, Blast % in Marrow is 2%.
The latest hematologist that we are now following up with is the one from the latest hospital visit. We have met with him twice since the diagnosis. He is starting her on Vitamin B6 and folic acid and starting weekly injections of Procrit starting this week. He has us following up with a transplant team at a OSU in January which I have found out is a Center of Excellence.
On the report we got from the doctor he has her diagnosis listed as Low-Risk and an IPSS-R score of 2. While reviewing some of the notes from the doctors and hospital visits they had a diagnosis that no one has ever mentioned to us and that was Stage 4 Chronic Kidney Disease. She has had some issues with kidney function over the past year but no one mentioned it was stage 4. Her cardiac physician stated that she was having kidney issued due to all the heart catherizations she has had the last year (Approximately 8 heart cathes). He said the dye used during the heart catherization can damage the kidney.
I guess a couple questions I have would be is the hematologist jumping to early by having us meet with a transplant team considering where she is with the diagnosis? Could her Kidney issues be an issue due to MDS or is that a completely separate issue? Any other thoughts you might want to share please do so.
Thanks for your time.December 15, 2020 at 9:11 pm #53812
My goodness i feel so sorry for your wife so much to deal with at 45 years 🙁 I am 78.
My treatment is using Dacogin get 4 days tranfusions, 4 weeks off.
Also, include steroid for comfort.
Test blood weekly if hemoglobin less then 10 get a redicrit injection.
Seems to only stabilize counts, red. White and platelets still very low.
Treatments so far 18 months. Recently applied to city of hope in Duarte,CA for 2nd opinion.
Good luck to your wife !!December 17, 2020 at 11:20 am #53835
Wife went to get her first injection of Procrit yesterday and when she got there they changed it to a different injection. They ended up giving her two Retacrit Injections.December 18, 2020 at 12:37 pm #53836staceyParticipant
I was diagnosed with MDS (5q- subtype) at age 34 in 2004 and am now 50.
One of the first things they did with my initial abnormal CBC was make sure it wasn’t a B12 issue. Did they check your wife’s B12 level? I assume they did, but you didn’t mention it, so I wanted to be sure.
For me, they knew it wasn’t an iron issue, so I was given a Bone Marrow Biopsy. They then tested my only brother very early on to see if he was a potential match, even before I considered whether or not to do a bone marrow transplant. They didn’t waste any time discussing options right away such as trying a clinical trial drug at the time (Revlimid, the option I chose, and still take today, because it works best for my subtype), OR a bone marrow transplant. The doctor mentioned in that conversation that if I decided on a transplant, I would need to freeze my eggs in order to have children. It was a lot to take in at a young age, and I’d imagine that’s how your wife feels. I never was sure how I even got the bone marrow disorder in the first place.
In the 16 years since diagnosis, they periodically do a comprehensive metabolic panel lab, and I’ve never had a single kidney issue and always have a normal creatnine and eGFR level. I can’t speak for certain as to whether others with MDS have had kidney issues, so I hope they respond to you in this forum if they have. What the cardiac physician mentioned about the multiple heart caths leading to the kidney issues could very well be the cause.
I’ve only had 1 or 2 Procrit shots, in the year I was first diagnosed and before my Revlimid medicine started working. They may have just switched to Retacrit due to things like shipping issues or cost. Unless Retacrit has less potential heart side effects…? I never received a Retacrit shot, so I don’t actually know anything about it. You might want to ask the next time they give her one so you know.
Please tell your wife I am thinking of her and send her my very best wishes.
-StaceyDecember 18, 2020 at 12:56 pm #53837
Stacey, How many MG is your Revlimid capsule?December 18, 2020 at 1:45 pm #53838staceyParticipant
I take the 5 mg Revlimid capsule daily with no days off. The original dose in 2004 was 10 mg, but they lowered that the same year once my counts improved, and I’ve been on that same dose ever since.
-StaceyDecember 18, 2020 at 1:54 pm #53839
Stacey it is funny you mention the B12. We had an appointment this morning with the Urologist who busted up her Kidney Stone last week. She mentioned she felt tired when he asked how she was doing and he told us to have her primary physician check her B12 and maybe he could give her a shot of B12 if it was needed. Said it might help boost her energy level.December 18, 2020 at 4:52 pm #53847
Stacey, they started me on 5omg daily , had rash and itching bad. Took me off. Going to recommend your treatment to them.
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