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Donna
ParticipantDale…. Yes I get the Dacogen IV 5days in a row every 4 weeks. I do not have a port. Sometimes we leave the needle in my arm for 2 or 3 days. I also get CBC every Monday.
DonnaParticipantSherry…..I have been neutropenic since before I started Dacogen. That was my first abnormal when I was referred to hematologist in 2012. I am not a candidate for transplant so I am hoping the chemo works for me. I wish you well.
DonnaParticipantHi Dale,
Dacogen is the only other chemo used for MDS as far as I know. I don’t know why the MDs order one over the other. Maybe mutations have something to do with it. I don’t know. I have had 3 cycles so far (5 days in a row by IV infusion, then 3 weeks off) and have tolerated the treatment good. No nausea, diarrhea, etc. I have had extreme fatigue. I felt worse after this last cycle. I get weekly CBC and my counts were extremely low…WBC .8; RBC 2.57; ANC .1; platelets 8,000, so I went for my 2nd transfusion of platelets and 1st red blood cell transfusion yesterday. I feel a little better today, but not much. I guess transfusions only raise these numbers a little. I’ll be anxious to see my blood work next week. Have you needed any transfusions?
DonnaParticipantHi Carole,
I will start my 3rd cycle this Monday, so I’m a little ahead of you and doing okay. My numbers were pretty low when I started. WBC around 1.2, platelets around 30,000, others I forget but all low. My first infusion, I had Compazine in the IV to cover any nausea. I just felt very fatigued and generally spent. I went home and took a nap right away. I never did have nausea, so the next day I decided to try it without the Compazine because I know that can make you sleepy and I was much better. So, I have Compazine pills at home if I need them along with Imodium and Colase in case of any need. However, I have not used them. My ANC has gone down to .1 and I am not allowed to be around crowds or sick people. WBC just went up to 1. Platelets had fallen to 11,000 and I had a platelet transfusion and now they are up to 21,000. I have no complaints from the treatment. I am on daily antibiotics until my WBC and ANC go up. I’m hoping by 6th cycle I see that the chemo is working. I am glad I started when I did. Why wait till counts are lower and I’m sure your doctor wouldn’t recommend it if he didn’t think it was best for you. I wish you the best. How old are you, if you don’t mind me asking. Are you a candidate for stem cell transplant in the future?
DonnaParticipantHi Debbie,
Yes, I do have MDS and I do go to a Center of Excellence. I am a nurse so I have an interest in learning whatever I can about MDS, however, I have been away from clinical nursing for many years and frankly, never heard of MDS until Robin Roberts, a TV personality in Boston got it. She talked about it when she was diagnosed and they kind of followed her whole journey on TV. Her sister was a donor for stem cell transplant and Robin is fine now. At least she is still on TV and looks fine. I pay attention to my numbers because, in my case, numbers and mutations seem to matter. Because my platelets have been in the 40s for a few months, my last bone marrow biopsy showed some disease progression, WBC around 1.9, RBC around 3, hemoglobin stays above 10, ANC .60. Everyone has a different experience with this MDS. I think some docs go by symptoms. Mine wants to, rather than do palliative care, try to slow down the progression, so I guess I’ll be starting Dacogen soon. I go back next week but he had me sign the consent forms last visit. Maybe if my numbers are better, we will wait another 3 months. I’ll soon find out. I just get tired easier and have to pace myself a bit. I also get a lot of bruises. Well, take care. Keep us informed as to how you are doing.
DonnaParticipantDebbie…Wow…I am sorry to hear you have endometrial cancer. Is that a recent diagnosis along with the MDS? So if he gave you the okay for surgery, maybe your numbers aren’t too low. When do you have surgery and when do you follow up about the MDS? Are you going to a Center for Excellence for the MDS?
DonnaParticipantHI Debbie,
I’m sorry that I can’t help. I really don’t understand that CD stuff. I will look at my biopsy results and see if it says anything about all the CD numbers.
DonnaParticipantHi Debbie,
I’m not sure what you mean. Do you mean in blood work results……the numbers of white blood count, platelets, red blood cell count, etc?ParticipantRUNX1 is one of my mutations also. I have 3 more (ASXL1, TET2 and SRSF2). My understanding is that it is not a MDS type but a gene mutation that some people with MDS may have. There is talk of me starting Dacogen soon and I have been told that your counts will drop the first couple/few rounds and that you don’t really know if it working or not until a few rounds are completed. That is probably why he needed the transfusions. I am not transfusion dependent now but I was told I may have to go to my local hospital for platelets, red blood cells or whatever in between cycles if needed. I think the shortness of breath is sometimes low hemoglobin. WBC and platelets are my main problem. I wish your Dad well. I will be curious on how he does. Is RUNX1 his only mutation?
DonnaParticipantHi Michael……..I have been followed for low WBC for several years. My first biopsy showed CCUS (clonal cytopenia of unsignificant significance). I was watch and wait for suspected MDS for about a year and a half. Then my 2nd bone marrow biopsy showed MDS with multi linear dysplasia. I have about 4 mutations that I don’t think are too good. Anyway, to get to your question….I don’t know the answer but I also get night sweats. My doctor does ask me on every visit if I get night sweats, so I imagine that means it has something to do with the MDS. My biggest problem is low platelets and I am supposed to be starting Decitabine after my next visit in April….unless by some chance my numbers are better, then maybe I’ll get another 3 month reprieve.
DonnaParticipantHi Amy………I don’t have answers to your questions, but I am about to start Dacogen probably around May. Do you mind me asking how low your husband’s counts were before he started Dacogen. I’m wondering how low they drop when you start it. My platelets are my biggest problems and they have been under 50,000 for the past 3-4 months. My WBC is around 1.8. My RBCs are not too low and hemoglobin is always in the 10s. I am glad to start Dacogen before my counts are too low because I fear what happens when they drop. Any information will be helpful.
I hope your husband begins to feel better and have less transfusions.ParticipantHi Kathy,
I was seeing an MD at a Center for Excellence who wanted to use local and some med by mouth (I forget what). He said there is no risk in the BMB procedure but once you add anesthesia of any kind, you add risk. I went to another Center for Excellence and have it done with conscious sedation. When I left the first MD’s practice, he did call me to discuss it. At that point he said he would have given me sedation if it was that important to me, but I had already made plans to go elsewhere for another opinion anyway. So, maybe if you push for sedation, they will agree. If not, is there another Center of Excellence near you?
DonnaParticipantHi Keith,
Thank you for responding. It is good that your numbers are up. Have you been taking Decitabine orally all the time?
DonnaParticipantLaura,
You are at the best place in our area. There are several doctors at Dana Farber that are quite specialized in MDS. I certainly hope your father’s numbers improve. I am going to start Decitabine soon but my plan is 5 days in a row every month, not 10 days. You can go for another opinion right at Dana if you want, or book him for another opinion at Mass General Hospital. Both are Centers of Excellence for MDS.
DonnaParticipantHi Kathy,
I’m a nurse and a wicked sissy when it comes to pain, plus I had seen BMBs done in the past and I knew they could be painful. I opt for conscious sedation. I’m awake through it and talking, feel a little pressure and that is all. Someone has to drive you though. Last time I had nausea/vomiting on the way home but it was my own fault because I at too much too soon. That darn banana was too heavy! Anyway, my first MD at a center of excellence wanted to do the BMB without sedation. That is when I went for another opinion at another center of excellence where I stayed. They don’t mind at all giving me a little conscious sedation and that is good with me. For me, I would always choose conscious sedation. I realize I am lucky to have two good hospitals within driving distance.
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