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  #1  
Old Wed Jun 26, 2019, 10:10 AM
JoMac53 JoMac53 is offline
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Time to start a thread here

Okay, so I guess it's time to start a thread here for my story. First off, I hate calling this a journey so I won't! lol And sometimes I don't come here for long periods of time because it can be too depressing for me. But sometimes it's the best place to read and get info or advice so I always end up coming back. I appreciate that these forums are here.

Right now it seems things are escalating with my MDS. My oncologist had initially given me a prognosis of 3 to 3-1/2 years without treatment and I just passed the 2 year mark so not really surprising.

I've seen two transplant doctors and picked the second one. She is very calm, very soft spoken, very clear and very patient. She is very confident in herself and instills confidence in me. I just saw her again two days ago and she is a little concerned about the high number of white cells on my most recent BMB but more concerned that there are a lot of abnormal monocytes and so now I have to see a leukemia specialist on July 3. The tumor board is reviewing my case that morning and may recommend I have chemo before transplant, either Vidaza or Dacogen, which she was already considering for the blasts if they were high. But she didn't seem concerned about them being 6-9%, which keeps me in the same category as last BMB, MDS-EB-1. But now she thinks perhaps the leukemia specialist will recommend some other chemo because of the aberrant monocytes.

Blasts on aspirate smear were 6%, 9% by flow cytometry and < 3% by IHC. Lab report says that IHC disparity may be due to sampling variance or methodology. I've never seen an IHC (Immunohistochemistry) number before but this BMB was processed at a different lab than my other two were and it's very different with loads more info on it, a lot of which I don't understand yet.

On the bright side, I have three 10/10 matches, one 11/11 match and one 12/12 match, all young men in their early 20s who have shown a level of commitment to donate so far as to have had follow up blood tests after their initial swab tests. And, she says, that means no radiation pre-transplant. She is going to make her choice and request him for my donor to have him take his physical. Then we can put the transplant on hold if I need the chemo but she'll know if he passes the physical or not and can move on to the next best choice if he doesn't, without that being a delay for us, because that process takes about 3 weeks.

If they do recommend chemo that will post-pone transplant but otherwise she was talking about 4 weeks! But I still have dental issues that need to be resolved and I don't think she knows how slow dental clinics for low-income people can move. I wish Medicare would pay for dental so I could go to a regular dentist and just get it done. Does anyone know if this would be considered "medically necessary" by Medicare?

I'm also meeting with their own ophthalmologist, who follows all of their transplant patients, the same day because I already have pretty severe dry eye issues, with glaucoma & beginning cataracts, along with diabetes, and my own ophthalmologist doesn't seem quite up to the task to me. As soon as I mentioned this to her, she instantly said they'd have me see theirs. So, another reason I like her. Maybe I should mention the dental issues to her.

Well, I guess that's it for my first installment! lol Otherwise I'd end up writing a book, especially about how difficult it is to get all the ducks in a row for a transplant to happen.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #2  
Old Thu Jun 27, 2019, 12:12 AM
quantpsyc quantpsyc is offline
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Hey Jo! Mention the dental issue to doctor. I imagine if there is any chance if Medicare paying for medically necessary dental work it would have to start with a doctors order!
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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  #3  
Old Mon Jul 1, 2019, 09:28 PM
JoMac53 JoMac53 is offline
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Kathleen, we discussed it and he told me to call the insurance company that manages my Medicare. So, I'm totally lost, lol, I didn't know it worked that way! I'll dig out the notices tomorrow and see what's on them.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #4  
Old Sat Jul 13, 2019, 10:23 AM
JoMac53 JoMac53 is offline
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Well, I was admitted July 5 to leukemia floor for chemo to knock out the nasty monocytes. Had 3 doses of Vzxeos, which appears to have done the job. Will be here for another 2 or 3 weeks, then home for 2 weeks, and then back for transplant. That's the plan so far, anyway.

Dr. says it's not AML because blasts are not high enough but he's not doing another bmb until day 21. As before, he mentions myeloproliferative neoplasms and says I do still have mutations, and even 2 new ones. Local onco doc hadn't said anything about that, and I don't get to see or talk to transplant doc right now either. I don't have access to all the reports anymore, whether because he's not releasing them or what, I don't know. Kind of bothers me but kind of a relief, too, in a weird way. I like both of these dr.'s, more than I like the local one, who I had considered changing from but hadn't gotten to that point yet.

Problems at home (1-1/2 - 2 hours away, disabled husband, 2 disabled daughters, 1 temporarily, 1 prob permanently) still consume a lot of my time and energy on phone, by txt, and via email but otherwise I'd be really bored! lol Can't believe this hospital charges $10 per day for TV service! Thankful for Netflix, Amazon, and ebooks from public library.

Guess that's it for now, waiting on low microbial breakfast replacement, since I had to send 1st one back due to runny eggs! Sheesh.

PS: Still waiting for dental to come and finish dental clearance eval. Dr. doesn't seem concerned but he's not the one with pain in his mouth! lol
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #5  
Old Sat Jul 13, 2019, 04:32 PM
Rarity Rarity is offline
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Join Date: Sep 2017
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Hi Jo,

So sorry you have to go through this. I'm glad that the meds are doing its job. My husband's diagnosis before transplant was MDS/MPN. Assuming it's gone (No bmb as of yet) since all has been going well for over a year.
It's easier said than done, and a lot on your plate right now, but hang in
there
Wishing you well,
Rarity
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  #6  
Old Tue Aug 27, 2019, 10:05 AM
JoMac53 JoMac53 is offline
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Thanks, Rarity. I'm still here waiting for recovery. Leukemia dr talking to transplant dr today about next step. Hopefully go home for 2 weeks and then on to transplant.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #7  
Old Sat Oct 5, 2019, 07:31 AM
JoMac53 JoMac53 is offline
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Sorry I'm not good about writing regularly here. I had my transplant on Oct 2. Everything seems to be going well so far. Had trouble with platelets again but yesterday I finally responded to one unit which brought them up tp 9. Just got another unit, I think from the same donor, at 5:30 am but I don't know if they'll do a post infusion plt check. I hope so. Main thing I'm having trouble with is lack of appetite and inability to sleep.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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  #8  
Old Tue Oct 8, 2019, 04:20 AM
Meri T. Meri T. is offline
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Prednisone and insomnia

Hello Jo,

Prednisone (steroids) kept me awake all night. I had sleeping pills which helped until 2 or 3 in the morning. Hospital lights were off at 9pm so it gave me around 5 hours drug induced sleep. Worth it. I have now weaned off the sleeping pills.

Find what you can eat, like fruits or even cornflakes. It's SO okay to have dessert for dinner, too !

Hopefully your platelets will come back soon.
Lots of prayers your way.
Meri.
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Female 54, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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