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Donna
ParticipantRita & Emily: Thank you so much for responding to my question. I’m beginning to feel better already! I will ask about the nausea med. Last bone marrow biopsy I had conscious sedation and vomited all the way home in my friend’s husband’s car. She borrowed his car because it was so much nicer than her own. Woops. I felt worse for her than for myself. Well, thanks for the good reports. I only work part time and it is rather flexible so I think it should all work out.
DonnaParticipantHi Janice……We spoke on one of the other topics. MGH and Dana Farber both come under Partners Health Care, but they are separate. Dana Farber is associated more with Brigham and Women’s. Anyway, my advice is to keep your appointment with Dr. Steesnma for another opinion…..just my opinion. Donna
ParticipantHi Janice….I had my first bone marrow biopsy about 1.5 years ago and it slowed involving into MDS but did not meet the WHO diagnostic criteria for full MDS. My second BMB was just last month and that is what showed MDS-MLD and it figures out to be intermediate risk. Dr. Steensma is supposed to be excellent and very knowledgeable in MDS. I have read several articles written by him and seen webinars…..just google him and you will see a lot or the Dana Farber web site where he has a small clip you can watch. Good luck. It will be good if they give it a name that can be fixed. Keep us posted. I would love to hear how your appointment went. Did you by chance go to the MDS Forum last July in Boston. It was informative.
DonnaParticipantJanice……….No they are not talking transplant to me. My doctor told me flat out that I am not a candidate for the regular transplant due to my age but that I might be a candidate for a mini transplant. It has not been mentioned again.
It’s a shame that you didn’t get a call back yet. I have found them to be very efficient from check in to check out. It has been a pleasure to deal with them, and I feel comfortable there. I don’t know if I will be able to stay there forever if I need treatment just because of the transportation issues. I drive in and my husband comes with me. If it gets to the point that I can’t drive in, I’ll have to rethink it. Some friends have said they would help out….we’ll see in time. I hope you get your appointment soon and have a good visit. Keep us updated. DonnaParticipantJanice……….No they are not talking transplant to me. My doctor told me flat out that I am not a candidate for the regular transplant due to my age but that I might be a candidate for a mini transplant. It has not been mentioned again.
It’s a shame that you didn’t get a call back yet. I have found them to be very efficient from check in to check out. It has been a pleasure to deal with them, and I feel comfortable there. I don’t know if I will be able to stay there forever if I need treatment just because of the transportation issues. I drive in and my husband comes with me. If it gets to the point that I can’t drive in, I’ll have to rethink it. Some friends have said they would help out….we’ll see in time. I hope you get your appointment soon and have a good visit. Keep us updated. DonnaParticipantHi Janice,
I am also north of Boston and when I was with the MGH hematologist, it was at Emerson Hospital. Do know who you will be seeing at Dana? On this site, MGH is listed as a Center for Excellence. The first bone marrow biopsy I had said I was “evolving into MDS” but now I am there. Please keep us posted. I’ll be curious to see if you like Dana. Will you go into Boston? They do have satellite centers also.
DonnaParticipantHi Janice,
I started with a MGH doctor and just followed for a few years. When it was time for my first bone marrow biosy, I switched to Dana Farber to get another opinion. I decided to stay at Dana for no other reason than I built a rapport with my doctor and I feel comfortable there. Both are Centers of Excellence. We are so lucky to have the two in the same city. I think it is always good to get another opinion before heading into any treatment. In fact, my doctor at Dana Farber suggested I consult with a colleague who is perhaps more experienced in MDS to see if I would be a candidate for a clinical trial. He wanted another BMB and lots more blood. Bottom line is the same…MDS now with multilinear dysplasia, intermediate risk. I am going to continue with my regular doctor at Dana because I feel very comfortable with him and trust his judgment. So, my suggestion would be to go to another facility for another opinion. YOu can always go back to your original doctor. I don’t know if this helped at all. Do you live in MA?
DonnaParticipantShelley…….It is also called reduced intensity transplant. I understand that up to a certain age, you still may be able to get a mini transplant when you no longer qualify for the regular transplant. My understanding is that the chemo they give you is less intense and easier for older people to tolerate. YOu can look it up or ask your doctor about it to see if you Mom is a candidate. Here is a little blurb about it:
A mini transplant has many names:
Reduced intensity Transplant
non-ablative or non-myeloablative transplant,
Non-myeloablative”, because the conditioning therapy does not fully ablate (kill off) the bone marrow myeloid cells prior to the engraftment or transplant phase of therapy.
DonnaParticipantWHat about the mini transplant?
ParticipantHi Michael,
Thanks for your response. See, my first MD at a Center of Excellence did call it MDS based on the mutations and the cytopenias (WBC, RBC, platelets). The new doctor I saw in consult says you must have all 3 things I mentioned above. Differences in opinions I guess. Anyway, I had more blood work and my platelets are now at 43,000 (down 9,000 in 2 weeks) and I don’t have the results yet from the bone marrow biopsy I had last Monday and the additional blood work regarding mutations. I’ll have to wait and see what the plan is dependent upon the results. I’m amazed about your blasts going from 6% to 1%. I didn’t know they went down unless you were being treated. It’s all so interesting if only we were not talking about our own bodies. I mean the science part is interesting. I am a nurse but never worked in this field, so I really don’t know a lot about it but find it interesting. I have been followed for at least 4 years, but the MDS talk just started in 2017. Well, I wish you well and hope you can avoid treatment for a long time. Me too.
DonnaParticipantHang in there, Cecile. I hope there is another clinical trial to help you, maybe even one for a cure. Keep thinking positive. My thoughts are with you. I have been watch/wait for quite a while. My doctor from a COE recommended I see another doc more specialized in MDS to see if I might qualify for a clinical trial. I always though you did the trial when the standard treatment failed, but apparently you can join a trial at any time. Good luck to you.
DonnaParticipantHi LeAnn,
This is the link to a webinar that is next week on CAR T-Cell therapy. I signed up for it but now realize that I have to work during those hours. I think it may be very informative.
DonnaParticipantHI Annette,
Is our husband at a Center of Excellence? My cousin has AML, had one round of chemo and has chosen to stop treatment and is also with hospice. He looks great too. His energy is pretty good. He has oxygen when necessary, sits in the chair, goes downstairs for meals. He is in a home for retired priests. It’s hard to believe it is end stage AML. The nurse said he will just get so that he sleeps more and more. I have MDS, no treatment yet and my platelets are 53,000, WBC around 1.8, RBC and hemoglobin just a little lower. Everyone is so different. I still work part time and do notice a huge difference in my energy level. I treat at a COE and my cousin is an a different COE. I wish you and your husband the best.
DonnaParticipantBetsy…..I am very happy to hear that you are going to Dana Farber. They are the best. There are a few doctors there that are really specialists within the specialty, in that they really specialize in MDS. I am going to a doc there and now going to see on the these MDS specialists for consult, mostly to see if there are any clinical trials that I would quality for. This is by the advice of my regular hematologist/oncologist at Dana. In other words they will work together to get you the best outcome. I hope your visit goes well and wish your Dad the best.
DonnaParticipantHI Don………..I would say to go to a Center of Excellence. I think the pathologists are more likely to read a lot of BMBs at a COE. I know my previous hematologist/oncologist wanted me to go to a specific facility for the BMB because of the pathologists expertise. Also, if she has a low tolerance for pain, I would ask for mild sedation. That’s how I have it done. I left one doctor/facility because they wanted to just use local and I was not going to do that. I hope your wife does well and has a good outcome. Best wishes.
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