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paml
MemberMary,
I spent 103 days last year inpatient between induction (AML), consolidation (transplant), GVHD event and a 2 night admit for an infection. This year I’m up to 10 days for the pneumonia. It is amazing how in our own ways we feel thankful about our journeys. We were thankful about obtaining remission, then that my brother was a perfect match. The rest of the story is exactly as you stated, my fellow transplant patients were really sick. I was thankful that I was out walking everyday under my own power! My nurses hated my leaving the floor but my doctors thought it was great. I promised the nurses that I wouldn’t kiss anyone while out…My fuzzy head, anxiety, and shakes absolutely went away after getting off the tacro. Anxiety was a tough one for me because I hadn’t really ever experienced it and to the degree that I did while on the tacro. I was so happy to get off it. At least the second time around I knew what it was.
My congratulations to Mike for heading back to work, wow! I had to tell my employer after a year that I wasn’t able to return to my job. I was an outside sales rep. My doctor said that he wouldn’t be ready to discuss going back to work until a year from transplant. I know that’s not until March but if it were today, there’s no way I’m physically ready.
Good luck tomorrow, it would be so easy if a blood test would rule out the need for a biopsy, I’ll pray for this first then a successful biopsy if necessary.
Best Regards,
PamMemberMary,
My 100 and 200 day biopsies were very successful, 100% donor cells as well. My year biopsy is coming up quickly. With active or treated GVHD it’s pretty much assured that if there are any leukemia cells the GVH is taking care of any rogue cells. Chemo, I had plenty! I had 2 induction therapies just to get the AML in remission, so that was 17 doses; that was my first 57 days inpatient. I then had 7 additional doses (consolidation) prior to transplant and another 2 of Methotrexate after transplant. There was no low dose chemo regimen for me. The following are the drug names, Daunorubicin, Cytarabine (ara-C), Bulsulfan, Cytoxin and Methotrexate. The meanest of all the drugs was the Cytoxin! I didn’t exactly sail through chemo but I was determined to hold my own! I haven’t had any radiation.The Dapsone was probably added about three or four months ago. I can’t remember what the catalyst was for that being added to the menagerie. I’ve been on the Neurontin since transplant; I came home on it for finger tip and feet neuropathy. I’ve reduced the dosage by 900mgs I’m not really sure it’s doing anything. With my doctors blessing I may just drop the rest of dosage to see what happens. Neurontin doesn’t require a taper.
My liver enzymes were extremely elevated with my GVHD event after transplant. I know my doctor was worried and my husband was beside himself, but I really just have hazy memories of any of it. A lot of the elevation can be traced to very strong meds. Right now my liver enzymes are AST 92 (8-35 U/L) and ALT 64 (8-35U/L). These higher than normal reading maybe caused by the antibiotic Leviquin that I’m taking for the pneumonia.
I have to say I hated the tacrolimus. I know it’s necessary but it was a source for the shakes and a very fuzzy head, I also think that it created anxiety for me. My head hair has been very slow to come in; I’ve had it trimmed once. It’s not half as thick as it was and of course came in curly and I had very straight hair. I was a scarf and hat wearer, no wigs for me. Interestingly, my underarm hair has not returned at all and my leg hair is so light you have to look hard to find it. My finger nails and toe nails came in with two chemo lines, one for the induction therapies and the last with consilidation. Now it’s just my big toes that are still growing out. I suppose I’m lucky that I didn’t lose any of my nails.
Congratulations to you and Mike for such good news. None of us would go into this decision lightly or in my case if there were an alternative. My AML was so aggressive we probably wouldn’t be chatting today. I’ve listed my caringbridge site address before; I post mostly after my clinic visits. It was very cathartic while in the hospital and continues to be a source of home therapy. Feel free to follow the link; I’m happy to answer any and all of your questions.
http://www.caringbridge.org/visit/pamlalumiere
Best Regards,
PamMemberZoe,
No excuse needed for a party here…I’ve always been like that! A West Virginia farmer I met at clinic said, “Everyday’s the Fourth of July, and Every night is New Year’s Eve.” What a great way for all of us to live not just those that have had medical issues! It is hard to believe that we’re coming up on a year since transplant and that last year at this time I was held hostage on the 10th floor at The James at Ohio State trying to obtain remission prior to getting to transplant. I’m very happy to be on this side of things!Mary,
Things are okay, I’ve had a bit of a health set back; was hospitalized on 1/9 with what has turned out to be viral pneumonia that actually infiltrated both lungs by way of a cold (rhino virus). This is not seen in the general population, only those of us that are immune compromised/suppressed. I’m on supportive oxygen and an antibiotic in case of a secondary infection. I’ve been told that the need for oxygen will probably be for 2 to 3 weeks (one down). This has been frustrating; it has really taken me down. I was doing really well prior to this but am planning a complete comeback!Yes on the GVHD; I was re-hospitalized for 20 days post transplant; I was very, very sick. I’m on my second immunosuppressive taper; this week I was reduced to 20mgs of Prednisone every other day. My current taper started in July…so this has been a really, really long one. I’m not on an antifungal right now they seem to increase my liver enzymes, possible a little GVHD of the liver too. So the list of maintenance meds looks like this, Valacyclovir (Valtrex), Dapsone (maintenance antibiotic), Prednisone, Nexium, Neurontin, and Ambien CR. There are a few other meds that I take for dry mouth, pain and a couple of others that are on an as needed basis. My morning pill case is full! I’m sure a couple of the meds off my list look familiar to you and Mike.
How is Mike and how are you?
Best Regards to All,
PamMemberHappy Birthday my dear. Wishing you many more birthdays and many years of good health!
MemberHi Mary,
I guess what I meant by recovering from my transplant is that the road to wellness is a process and that it’s not a straight line to the finish; or at least it hasn’t been for me. I was re-hospitalized for 17 days after my initial transplant release due to GVHD and CMV. After that event and subsequent immunosuppressive taper I was good for about two weeks before I was back in clinic with a head to toe body itch; GVH of the skin again. I’m currently on 20mgs of Prednisone down from 160mgs (no 160 isn’t a typo). I was re-hospitalized one other time for two nights for an infection; I responded well to antibiotics.I get very tired so I pick and choose what I’m up for in day or evening. While out in public I still wear a mask because of my suppressed immune system. I have neuropathy in my feet and finger tips from the 22 doses of chemo that I’ve had. I’m sure there’s more but in the scheme of things I tell people I’m just happy to be walking in the green grass. Please know that none of the above is complaining it’s just a description. I feel very blessed for experiencing this level of healing. It was this time last year that I found out that my MDS was transforming and in all probability had already moved to AML.
I have read your posts on the forum and am very happy that Mike is recovering well from his transplant. I’ve kept a journal on CaringBridge if you’d like to take a look at my journey; the link is as follows,http://www.caringbridge.org/visit/pamlalumiere/journal
I’m happy to share anything about my experience, feel free to ask. Wishing you a very Merry Christmas, Happy Holiday, and a Happy, healthy New Year.
Best Regards,
Pam (Day +273)MemberI had the beginnings MDS prior to 1987 with no chromosome abnormalities. In December of last year the MDS tranformed to leukemia and the I had the monosomy 7 abnormality then. I am recovering from a 3/2009 stem cell transplant.
Pam
MemberHi Sharyn,
I’m very sorry about the loss of your brother. I too had a BMT; mine was done at Ohio State in March of this year. I don’t think that MDS has ever been proved to be a disease (syndrome) of genetics. The chromosome that you mention is actually a mutation in the marrow that occurs because of the disease not as part of your genetic birth makeup. I went many years with what I would describe (now) as an innocuous MDS-RA with no chromosome abnormalities. In December of 2008 when I was diagnosed with AML my marrow did have one of the high risk factor chromosome defects in chromosome 7. My stem cell match/donor/hero is my brother and we are 100% HLA matched. I should add that leading up to the AML dx I’d had numerous bone marrow biopsies over the 19 years that spanned the MDS dx.Again, please accept my condolences regarding your brother.
Best Regards,
PamMemberHi Paul,
Waiting is awful however, as Jack suggested the only way to dx MDS is through a bone marrow biopsy. Also know that a virus can play havoc on a healthy person’s blood counts skewing their normal ranges until that virus has cleared the body. Wishing you good health, let us know after your appointment of the results.Pam L.
11/08 – RAEB2, 12% blasts.
MemberLynn,
Merry Christmas, you couldn’t ask for a better gift!
I have an appointment at Ohio State scheduled for 12/29 with a Dr. Blum. Dr. Blum has at least two trials going on at this time. There was some suggestion in an early conversation that I might qualify for at least 1 of them. I’ll post after the appointment.
Happy Holidays to all,
Pam L.
MemberJack,
I was off line for several days…
I think the term I used, “research docs” is probably a misnomer. What I mean are those physicians, who treat at “treatment centers”, and those associated with treatment studies etc; we find them in Centers of Excellence or med schools. I agree, no fooling around, I’m aware that my life depends on getting the blasts under control. I hope to be associated with a treatment center and in the hands of a doc that I trust prior to the New Year. I expect that my siblings will be HLA tested and that we’ll take the suggestion of transplant under advisement… Kirby spoke my concerns specific to that choice of treatment.Jack, you are very blessed to have friends and family for support and company; my heart aches for your loss. I have to graduate my son from high school and my daughter from college in 2010; a few jobs left undone and missions to fight to complete. Thank you for your comments.
Pam L.MemberHi Jack,
I’m still reeling from the change in dx; seems kind of silly I suppose. I guess I just thought naively, or wishful thinking if you will, that after 20 years “it was what it was,” surprise.
I have three siblings and absolutely would consider a transplant after their HLA testing and maybe a go at some other treatments. I’m anxious to hear what the research docs will have to say. Timing is everything…
How are you doing after your loss?
Pam L.MemberZoe,
Thanks for the recommendation of Ohio State. We’re waiting until after my 12/9 consult in Dayton with my doc of 18 years (I tease him about being together longer than most bad marriages). OSU is closer and we have another doctor contact that is recommending them. I’ll let you know the decision once we’ve arrived at one.
Thanks,
Pam L.MemberKirby,
So nice to see that you are doing well and that the latest of suggested treatments is working for you. Thanks for sharing your information.
After 20+ years of a lower level disease and only short periods of time when I required growth factors, I have moved on to RAEB2, 12% blasts, with no cytogenetic abnormalities. Currently all 3 cell lines are affected. I have a consult with my oncologist on 12/9 to discuss next steps and which research facility to align my treatment. I am considering Ohio State and Cleveland Clinic.
Any suggestions form you would be much appreciated with regard to your treatments, experiences, and facilities which you’ve associated. I reside just north of Dayton, Ohio.Thanks,
Pam L.MemberRoger,
Just checked your website Ihavemds and found you’ve shut down. Drop the forum a note so we know where you are in the transplant process.
Pam L.
MemberSgoodman,
Like me, you’ve been around for a while! You probably already know, but the condition of high platelets is called Thrombocytosis. This, like myelofibrosis is a myeloprliferative disorder. From my understanding it is not uncommon for mds patients to crossover with symptoms of both diseases. 4+ years ago at my last bmb I showed signs of both diseases. If you haven’t already, it sounds like you’ll be having a conversation with your doc.
Pam L. -
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