[maggiemag]

Well yes, but I would want to know if Medicare was going to cover it first. I don’t like surprises like that. Do you have a supplement as well?
Margaret

[maggiemag]

Hi everyone. I haven’t been on this message board in months, maybe years. But Len, I am EXTREMELY interested in how you got approved for the Luspatercept. That’s my goal. I am on Medicare with a supplement, and I have been told that you can’t get the drug without having ring sideroblasts, which I don’t have. It seems I am now transfusion dependent, about every 6 weeks for HB under 8.0 Are you paying out of pocket for it? Not what I want to do for sure. What did your physician say to get you approved? Thanks in advance.
margaret

[maggiemag]

So, 13 days and not one response…sad.

I guess I will answer my own question! I had the bone marrow bx, thankfully another piece of cake for the third time, no sedation btw. The cytogenetics aren’t back yet, but the MDS is progressing. I started on Aranesp injections this past Tues. I start on Revlimid as soon as the paperwork is completed and someone pays for it! The Aranesp is contraindicated with a history of clots but the honc thinks the benefits far outweigh the risks. I will just remain on the Coumadin with close control, and they have asked for my own machine to do the INR’s at home. I think it will be approved. The Revlimid,it seems, is contraindicated in patients with Multiple Myeloma, not MDS. They take 25 mg./day while MDS patients take 10. Not looking forward to taking it though. Repeat Hb is 9.0,so will receive my first transfusion soon.

Margaret

[maggiemag]

Hi Mac,
It seems your situation may be complicated. Are you sure your dx isn’t hypocellular MDS, rather than hypoplastic? I would urge you to go to an MDS center of excellence. I think there may be a list of those on this site, and I would imagine that Dana Farber is one. Good luck!
Margaret

[maggiemag]

Mary, I’m not sure I can shed any light on your father’s death, but I’ll try. I used to be an ICU nurse in my former life. If someone is in acute renal failure, their potassium level is sky high. This alone affects the heart so much that it can kill you. I think one of the most common untoward effects of dialysis is a low blood pressure, which can bottom out. In an elderly man whose heart would already be affected by a very high potassium, if his BP dropped precipitiously, it could be impossible to bring it up to perfuse the body. Sometimes they *third space* where the fluid kind of like seeps out into the tissues and no amount of volume will bring up the bp. Hope this helps some.
Margaret

[maggiemag]

Pam, congratulations on being such a survivor. As for your friend, I really do not understand what you mean by iron not binding. Heme was never my area of expertise and it it sooo complicated! I will say that any lab test related to iron must be viewed in context with the whole iron panel. A little more of her history may help me figure something out; or not. Is she transfusion dependent? What are her numbers? I have learned that if there is a change in the overall picture, that my heme/onc would insist on doing another BMB to see if things have progressed. Does she have faith in her physician? What treatment has she had so far?
Margaret (Mags)

[maggiemag]

Renee,

Thank you so much for posting your story about Cathy. It must be very painful to relive the events. I am an RN and I am still puzzled. Did they perhaps do a cardiac echo after she went into the severe renal failure after the BMT? Her heart may have been fine immediately before the transplant and then had trouble. Many of the chemo agents used before BMT can cause cardiomyopathy, a heart muscle disease. It doesn’t show up right away. That’s why they do echos before chemo, to make sure the heart starts out ok before the chemo. And as you probably know, severe renal failure can cause major confusion as the body’s electrolytes are way out of whack. It doesn’t sound as if she had a severe allergic reaction to the actual BMT infusion, as that can cause renal failure as well. But you would’ve known that then.

I wish I could be of more help. What do the doctor’s say? Do they have any explanation? They must have some theories, although may have not shared them with you and your family.

I hope this helps some,
Margaret

[maggiemag]

Renee, I am so sorry to hear about Cathie. I tried to be of support to her, so I hope I am not at fault for upsetting you. If so, I am sorry. Please accept my prayers and thoughts for your entire family.
Mags

[maggiemag]

I forgot to mention another reason that I was also still suspicious was because The Informer posted the EXACT same message on Marrowforums, so I know it was canned. Gimme a break.
Mags

[maggiemag]

Ok, maybe I am just very cynical, but I look at this posting as a thinly veiled advertisement. And I am offended at anyone coming to this kind of site, and trying to make some money off a so-called alternative treatment. If this case were true, that person sure had a horrible heme!
Mags

[maggiemag]

Thanks, Gene! (taking a very small bow….)

It does appear that I have the 5q- syndrome. No other chromosome abnormalities on either BMB. I do have mild myelofibrosis reported on both of my BMB. My heme/onc isn’t sure of the significance yet, but says I do not have primary myelofibrosis. I have had macrocytic anemia for a couple of years. My Hb in Feb. was 10.2, which is my lowest so far. I go on a growth factor at 10.0 and she will transfuse at 8.5 since I already have CHF. Btw, I just turned 62 as well (gasping)! I am an RN.

Keep us posted!

Mags

[maggiemag]

Gene, that has to be it then, that all the cells show the same thing! I bet it stands for complete profile or something like that. On my reports, they both say that number of cells counted was 46, and total number analyzed was 20. After my del(5)(q13q33) there is a bracket with a 13 followed by 46,xx bracket 7. In the summary it says that of the cells analyzed 13 of the 20 showed the 5q deletion and 7 were normal karyotype. So my whole karyotype is:

46,xx,del(5)(q13q33){13}/46,xx{7}

Mags

[maggiemag]

Hi Kenneth. You piqued my curiosity, but I have been unable to find it as well. Just now tried to dig a little deeper, and I did find a website with a zillion links. I bet you can get your answers on one of them. Here is the link:
http://www.kumc.edu/gec/prof/cytogene.html

Also I was wondering if you had your cytogenetics from other BMB and how does this latest one compare? Did the report list how many cells they tested and what % of them have each abnormality? For instance, my second BMB lists 27% of cells tested had the 5q. How does yours compare?

Please let us know what you find out, OK?

Mags

[maggiemag]

Hi to all. I am not as young as you, Rachael ;-), but I do have the same thing. I have not needed any treatment yet either. It is annoying not knowing when/if it will progress. I will be having monthly CBC’s from now on.

Kenneth, did you have all your chromosomal changes when you were diagnosed, or did you progress from low risk to intermediate and add them? That’s the kind of answer I was hoping for in my recent post. I also have the mild myelofibrosis. Do you remember what % of your marrow cells showed the chromosomal changes? I would sure like to predict the rate of progression! But I am grateful to be where I am now and not worse.
Mags

[maggiemag]

Cathie, so glad to see you post! I know what you mean about those who say that you look just fine, or you don’t look sick, or some kind of thing like that. I just want to slap them, really. I don’t know if you remember, but I have a host of other serious issues, some of which the doctors haven’t figured out yet. I have early MDS with chromosomal change and mild myelofibrosis, but am still not needing transfusions. I finally said to one well meaning person (I suppose she is anyway), that when she says *well you look fine*, that it makes me feel like I am making it up and exaggerating my conditions. If anything, I am minimizng it! I am an RN and DO know what I am talking about! I am lucky to be here. She was embarrassed but I don’t think she still *gets it*. I am tempted to go without makeup someday and people will see how bad I really look! Haven’t been able to bring myself to do that yet…..

I am sorry you are having a difficult time. Keep us posted on the BMT.
Mags

[Author]

Posts