It's my birthday and my survival anniversary,#19.

[lindajo]

Today is my 49th birthday and my 19 year of survival. I am healthier now than I was at 30 or 40. I am stable but have never been in remission. Today, just for today I will be happy about that.

I still have trouble using the happy face icon’s. One of these days I may figure out how.

[lindajo]

Oh my gosh the icon actually appeared. I don’t even know how I did that.

[plantcollector]

That is wonderful! Thanks for posting this. Don’t think I have have ever heard of anyone with that many years. It certainly reflects what a lot of people say about MDS – every case if different.

[Mary4Mike]

Lindajo,
Happy Birthday and Congratulations! 19 years! It sounds like you have a wonderful attitude and that can make all the difference in dealing with this…….for you AND your loved ones. For the most part, people with MDS don’t "look" sick unless they are undergoing chemo and suffering a severe nadir and everything else that can go along with that. My husband has been told through his whole journey with MDS that "you would never know anything was wrong with you". The people who live with this and/or live with someone who has this know different.

Keep up with your regimen…..it is working for you!

Mary

I am intrigued that the B-12 shots are working for you. Also, I don’t understand the RCMD or bone marrow failure, not requiring transfusions. Can you explain what RCMD is?

[mikeirbyusa]

Congrats!!

Happy Birthday!

WONDERFUL to hear such great results! Really gives me hope that I can make it long enough to see my grandkids marry and give me my 1st great-grandchild! Honestly thought if I made 5 years I’d be doing good but your 19 is very encouraging!

THANK YOU for sharing that.

[LynnI]

Happy B-Day and major Hooots for 19 years!!

[lindajo]

RCMD is Refractory Cytopenia with Multi-lineage Dysplasia. Under the World Health Organization Classification System.

The doctors really don’t understand why I don’t need more transfusions either.If I get a flu virus or infection my counts dive and I need a transfusion.

I had a top of the line disability policy when I got sick. I have not been able to increase my activity level in order to work any kind of regular schedule. My disability policy makes sure I don’t have to work in order to eat. Having the ability to rest whenever I need to has enabled me to manage the disease. Most people are not that lucky.

[paml]

Happy Birthday my dear. Wishing you many more birthdays and many years of good health!

[Mary4Mike]

Paml,

Speaking of Birthdays, you have your "New" birthdate approaching in the next couple of months. I have to ask, how are things going for you? Have you experienced any GVHD? Are you still taking an arsenal of antifungals, antivirals, immunosuppressants??????

I would love an update as we are going through the same journey.

Mary

[Zoe]

Lindajo, what wonderful news and a great thing to celebrate 19 years and still going strong! Congrats.

Pam, it is hard to believe it is going on a year from your transplant. You have earned a party…I mean who really needs an excuse for a party, but when you have a reason, it is all the better!

Zoe

[lindajo]

Pam You do deserve a party. You have had 20 years of Bone Marrow Failure diagnosis. One year past transplant. Congrats! You are an inspiration to me and many others!

[paml]

Zoe,
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,
Pam

[Mary4Mike]

Pam,

It is good to read that you have things under control. These transplant docs really keep a close watch on things and for that we are grateful. Mike had his 100 day BMB and the results were great. His perephial blood and monocyte bone marrow test came back 100% donor cells. The lymphocyte bone marrow test came back 94% donor cells. Apparently these are the ones that seem to linger around the longest. The doctors were pleased and we were ecstatic to say the least. Our challenge now is elevated liver enzymes……extremely elevated. How high did yours get? They reduced his fluconozole to every other day because of this. They weren’t ready to take him completely off yet. We are waiting to hear from the hospital for an appointment to have a liver biopsy done yet this week. They are going to do it through the jugular vein so it is an over night procedure. This has been the first "glitch" so far. He breezed through the whole transplant experience. The prechemo was a snap for him. He had MINIMAL effects. It was much worse when he did Dacogen. I see from your signature that you never did any chemo treatments. Did you have to do radiation prior to transplant? Mike didn’t and we were thankful for that, too. Mike is on acyclovir, no valtrex, never on steroids, tacrolimus, off protonix (your nexium), fluconozole every other day, urosodiol, and blood pressure medicine. Why do they have you on neurontin? Have you taken maintenance dapsone the whole time since transplant? I would love to have him do an herbal liver cleanse, but I don’t dare until we find out what is going on. She has already run all the viral checks and they were all negative. The doctor suspects it is the extra iron. His FE is 4200. It could also be some GVHD. She wants to find out so she can begin treating it correctly. She is talking phlebotomy if it is iron that is causing the problem. His HGB is 16.2 so she said it wouldn’t be an issue.

It is great to talk with someone that has been through this, too……or should I say going through this, too. I guess we will always be going through this, but if we hadn’t gone this route, we would be going through the other…MDS…and in your case, AML. Mike could tell when the cells took over. It was right around the 100 day mark. Three weeks prior, there was only 60% chimerism. His hands and feet went from freezing to warm again. Also, his beard came in thick! Right now he is going with the bald look. He says he has a feeling of "well being". Did you have any similar feelings (not the beard )?

I appreciate you sharing with me about your experience. I know I asked a lot of questions, but like I said before, it is great to have someone else here that has been through this, too.

Hope things keep looking up for you. It sounds like you are on the upswing.

Keep in touch,

Mary

[paml]

Mary,
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,
Pam

[Mary4Mike]

Pam,
Wow, 57 days inpatient prior to transplant. What was your total hospital stay? When I read Mike your posts, he said that we have so much to be thankful for because of the easy time he has had so far. The other patients on the transplant floor would have their doors closed for days with strict isolation instructions posted. Mike’s stay was 21 days. We found out this morning that he is scheduled for liver biopsy at 7:30 a.m. tomorrow. We will be glad to get this over with and get on with whatever has to be done. Mike returned to work last week full time. He is in sales so he can do the bulk of his work at home, but it is getting into the busy season and he has to get out and see customers. (do I need to mention LOTS of hand sanitizer? ) I looked up his enzyme count and last week his was ALT 233 and AST 118. We are praying that they draw blood prior to the biopsy and things are back to normal. I doubt that will happen, but…..

Mike’s prechemo drugs were Fludarabine and Busulfan (protocol named FluBu2). I never thought to tie the fuzzy head to tacrolimus. I figured it was the prechemo. Did yours clear when you went off the tacro? Mike has a bit of the fuzzy head thing, kind of dazing off, but no shakes or anxiety. He still gets winded easily, but he seems to be slowly gaining stamina.

This truly is a life chapter. I can’t imagine the people that go through this alone. Our faith and the support of family and friends has made this a bearable experience. Thank you again for sharing and if I have anymore questions I will ask. I enjoyed your caringbridge site. I really should have set one up, but I am not that clever or savvy when it comes to something like that.

Keep doing what YOU have to do to get stronger and better!

You are in my prayers,
Mary

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