July 6, 2019 at 7:12 pm #47015
My husband Leon is almost 63 and over two years ago we started a wait and watch journey; his hemo/onco strongly suspecting pre-MDS. Has battled more illness since February/March to present, i.e., food poisoning (x3), throat/tonsil virus, skin infections, Influenza A, etc. We were told May-end by hemo that he has now become neutropenic in addition to the anemia. He wants one more round of blood and is suggesting BMB No. 2 before a concrete diagnosis, although he is strongly leaning towards this diagnosis.
Reading many of your posts, we decided to contact the closest care for excellence center (Johns Hopkins – Sydney Kimmel). Dr. Amy DeZern is one of the head doctors in the field of MDS and Bone Marrow failure diseases. We were told to gather labs, pathologies, other related tests and his doctor’s clinical notes and send them over. I did so. Her assistant called to let us know all was received but when she looked at the dr’s May clinical note, she pointed out that the Center only treats does not “diagnose.” She noted his mention of waiting until August end for final diagnosis. I apologized and asked if she could “hold” the records and we would contact them in late August after leon’s next CBC. She hesitated a moment and said she thought it might be better if she still goes ahead and gives his records to the doc, let her decide. Not sure why. That was 9:30am. We got a call at 10:45am from her Assistant stating Dr. DeZern did in fact want to see him in early August. Question – do you feel that perhaps she saw enough in her opinion to feel a diagnosis of MDS was in order, or, perhaps some other disease?
Another question, Leon has developed some dizziness/nausea over last two days, also very tired. This is new, the dizziness/nausea. Any wisdom at what point we should contact the doc, or is this a normal thing with this disease?
Strange, as a spouse, caregiver, I found comfort in the watch and wait. The recent illnesses and additional new cytopenia has my heart heavy. We are strong though and his attitude is so upbeat!
Any thoughts on my questions is much appreciated.
Best wishes to all here.July 7, 2019 at 10:35 am #47017
Yes Malissa it’s all very stressful for both you and your husband. I find dizziness for me means my hgb is low and usually need blood. A BMB would be the likely next step to find out what really is going on in the marrow. If he is becoming much more symptomatic I personally would push to get it done sooner rather than later to know where you stand.July 7, 2019 at 12:55 pm #47018
Thanks Kathy. One of the reasons I encouraged him to let me set something up at Hopkins was b/c his hemo wanted another BMB. Thought it better to get it done there since they seem so proprietary with specialized testing at their hospital. Did not want a Leon to have to go through a third one. I think maybe my thinking is wrong. We are going to call his local hemo tomorrow and take it from there. Yes, his health and energy have changed drastically. His first BMB showed 65% hypercellular and abnormal RBC morphology. His blast count was under 5% with no abnormal cytogenics, however his hemo advised that these things can change slowly or quickly. Do you think he HOPKINS doctor is seeing him b/c she sees enough to strongly feel he should be there now, despite his local dr. Waiting another month to commit to a firm diagnosis?
I hope you are enjoying this day with smiles and peace.
MalissaAugust 1, 2019 at 8:48 pm #47469
My first symptom of MDS was severe vertigo. It lasted 2 weeks and was awful.I had several less serious episodes during the following 6 months. In March of this year I was diagnosed with MDS and began weekly PROCRIT shots. I’m still having dizziness and nausea pretty much all the time. I went down to M.D.Anderson in Houston for a second opinion and the agreed with my hemo/onco diagnosis and recommended I continue weekly treatments.
I have the Q5 minus and TP53 type of MDS which means my illness can be treated but not cured. Since I’m 67 I’m not eligible for more aggressive treatments like bone marrow transplant. Since my MDS is considered “in the early stages” they tell me I’m not sick enough to participate in a clinical study to test a new drug designed specifically for my type of MDS.
Other symptoms I’m having are extremely dry skin, tremors, failing eyesight, heart palpitations,bone pain, breathlessness, and memory loss. It’s like torture to not be able to work in my garden or travel to visit my grandchildren.
Not sure if any of this rant is any help to you. But it kinda felt good for me to get some of this stuff off my chest. So thank you very much. CherylAugust 2, 2019 at 11:42 am #47500
Malissa…..How did your husband make out? Did he have a second BMB locally? When I started, I was on watch and wait for a few years with blood work every 6 months, then 3 months, then BMB which showed pre-MDS like your husband. I started with low WBCs and then low platelets and about a year later I had a 2nd BMB which showed MDS with additional mutations and in general more advanced. I started Dacogen infusions when my platelets were in the 30s. Now I have had 3 cycles and will start 4th on Monday. My numbers continue to drop and I have had both platelets and RBC transfusions, but not many. I’m hoping for good result soon. I hope your husband gets clear diagnosis soon and a treatment plan. The worse part for me was waiting and wondering.
DonnaAugust 3, 2019 at 6:34 am #47507
Cheryl, although my posts here so far have not been too many, everyone here is so compassionate and patient with listening and sharing their own journeys. Thank you for sharing yours. I sincerely hope your days get easier so you can enjoy the things that bring you joy. I am sorry for your struggles. While our faith gives us comfort and hope for beyond, everyday struggles seem impossible sometimes. Hang in there and continue to reach out here; amazing people here in this special group of people.
MalissaAugust 3, 2019 at 7:01 am #47509
Hi Donna. July has been a whirlwind. Leon had to take an unexpected one month leave of absence from work; no energy to stand 12-14 hours in the pharmacy (pharmacist). The strange thing is that his CBC numbers are the same (still abnormal low) but he feels worse. Went in earlier this week (Thursday) to visit local hemo/onco. While waiting in exam room at 9:30 a.m. Leon suddenly felt nauseous, excused himself to the restroom, and vomiting/diarrhea ensued until about 3:30 in afternoon. Dr. felt it was another bout of food poisoning. Poor guy, we live on an island and had a 45 minute car ride that was very unpleasant for Leon.
Anyway, Dr. wants BMB done next week, no waiting until for HOPKINS. He is hoping to glean something from the upcoming report. I hope the temporary rest from work (Aug. 1st start date) helps him regain some energy. I think we are all scratching our heads now, including the doctor. His Hopkins appointment is August 16th. His spirits are a bit lower than I like. My head just hurts from all the work related phone calls establishing leave of absence, short term disability, benefits, etc. my heart aches because I hate to see him feeling so poorly. The Dr. mentioned that should the BMB not tell us anything definitive, he was going to order a full body scan of sorts.
I hope you are smiling and feeling good today.
MalissaAugust 16, 2019 at 4:55 pm #48691
I have seen this Dr she is very thorough. I am sure you have your answers by now. Hope everything is going well. I too suffer from vertigo. Sometime its lasts for days and I stay home and can’t drive. Doc’s won’t say what it’s from. I have low risk MDS which affects my RBC. I also have A-fib.
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