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MDS Myelodysplastic syndromes

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  #1  
Old Mon Nov 16, 2015, 07:28 PM
rar rar is offline
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16 months past SCT and doing fairly well. The saga of my transplant, start to now

Since there are people constantly coming and going I thought it might be a good idea to post my transplant experience from start to now at 16 months. Keep in mind that this is a risky procedure and this is a summary of my treatment. It seems there are as many treatment modalities as there are patients. Most transplants have some bumps in the road. Mine were probably a little worse than normal.

Feb 2014 Routine CBC blood test by PCP showed slightly low red, white, and platelet counts. PCP refereed me to a hematologist. I was somewhat worried when his office said Cancer Center. Hematologist did some more testing and said I had a very mild case of MDS (bone marrow cancer) that probably would never need treatment.

May 2014 Return visit to oncologist resulted in more tests including a bone marrow biopsy. BMB showed 14% blasts (cancer cells). The diagnosis was now MDSRAEB2. Without treatment the 50% survival time for this is 5 months. I was only 73, much too early to have this fell me. The only cure is a transplant. All three of my sisters were 10/10 HLA matches. All three of my brothers were 0/10 matches. We picked my baby sister (68). Blasts were another problem. For a transplant my doctors wanted blasts below 5%. They found a clinical trial for a drug (AG-221) that works for people who have a IDH2 gene mutation, which I had. I was enrolled as lucky 13th patient in the world to receive this drug.

A side note on clinical trials. Clinical trials is how breakthroughs in drug treatment and new drugs occur. About 5% of eligible patients will participate, slowing research progress. During my treatment I was enrolled in 6 different trials.

June 2014 In a month on AG-221 my blasts went from 14% to 2%, but the blood counts did not improve. I was advised that this drug was probably not a durable cure for me and wanted a transplant ASAP. I asked what were we waiting for. I underwent reduced intensity chemo and total body irradiation. No side effects from either.

July 1 2014 Happy rebirthday to me. My sister donated the stem cells and that were immediately transplanted. Due to drugs they gave me I slept through the whole process.

July - Sept 2014 We were required to be within 15 minutes of the hospital for these three months. For the first month I was monitored every day including weekends. This tapered off to 3 times a week and then twice a week. We were fortunate to be a guest of Brent's Place. The provide 16 apartments at no charge in their building for people undergoing blood cancer treatment. Most of the apartments are for kids, but they have two for old codgers. They are very conscious about cleanliness due to high infection rate among those who have suppressed immune systems. They also provide entertainment and many meals. One evening I had dinner delivered to our room by Miss Colorado. They also provided premium seats to the Rockies and Bronco games, to museums, etc. I regained much of my strength and was doing 5 mile daily walks. I was yearning to be able to sleep in my own bed again.

Oct - Nov 2014 I did get to spend two nights back home and started running a fever. I went to the ER and in 5 minutes I was in a hospital bed. It turned out that I had CMV, c.diff, and graft vs host (GVHD) grade 4 which completely destroyed my gut lining. I was unable to eat anything for 2 months. I lost 40 pounds. In the first 6 weeks they were making no progress. Survival rate for this condition is less than 20%. I felt like I was in prison. I was not allowed to even leave my bed unescorted. They packed me in an ambulance and drove me to another hospital. An ambulance is not a comfortable mode of transportation. Fortunately the ride was only one hour. In two weeks they worked out a game plan that allowed progress. They put me on TPM (IV feed) and the weight stabilized. End of Nov I was discharged and sent home with home TPM for another two months. TPM does not make a good Christmas diner.

Dec 2014 - Jun 2015 After the hospital stay I was mostly cured of my ailments but extremely weak. The home physical therapist was very proud when I was able to walk a block. In Jan. I was weaned gradually off the TPM and started some solid food. Recovery went slowly but surely and I was back to walking 3 miles a day and feeling much better. In May and June they started tapering me off my transplant drugs.

July 2015 My first rebirthday was July 1. The doctors thought I was doing so well that I should stop taking my small doses of transplant meds. 3 days later I broke out in a spectacular example of GVHD. I had a rash from the soles of my feet to the top of my scalp that felt like someone was sticking pins into the poison ivy like rash that I had. The GVHD also effected my eyes and mouth. Back onto transplant drugs. No change. Increase prednisone which topped out at 120 mg. a day. Some pretty nasty side effects from that dose.

Nov 2015 Pred is now down to 7.5 mg. a day. My oncologist says that I have a very strong transplant and that my chances of relapse of MDS or getting AML is less than 20%. He said that I will probably be on some immo suppressant drugs indefinitely so I will have a very low risk of GVHD. When I stopped the drugs on July 1 my pred was 5 mg. once every 3 days. The doctors thought that at such a low dose would allow for stopping the drugs. Now they agree they tapered too fast and will go slower this time. Overall the oncologist thinks I am in very good shape and even more so when you consider what I have been through.

Fortunately I have Medicare with the plan F supplement so medical charges have been zero. Medicare shows this treatment resulted in 523 Medicare charges totaling about $1.5 million. The VA is providing me all my drug needs at no charge. It seems like I get a package from them almost every other day. If I knew then what I know now would I still opt for a transplant? Silly question, of course I would. Would I have survived without my trusty care giver. I don't think so.

Last edited by rar : Mon Nov 16, 2015 at 08:22 PM. Reason: spelling
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  #2  
Old Mon Nov 16, 2015, 07:47 PM
Neil Cuadra Neil Cuadra is offline
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Ray,

Thanks so much for writing up this summary. No two patients are alike, as you point out, but I think it'll still be very helpful for anybody in similar circumstances.

I hope your slow taper will go well and let you get off immunosuppressants in the coming months.
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  #3  
Old Tue Nov 17, 2015, 12:52 PM
bailie bailie is offline
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Thank you Ray. I think the information helps everyone. It is important to face this disease head on with the realization that there will be many variables for everyone. How are you doing with "tiredness" at this stage? I do well until about 7:00 in the evening and then I am ready to head for bed. It seems like I need about 10 hours of sleep each day. I don't think that is unusual, but different than pre-transplant.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Tue Nov 17, 2015, 04:04 PM
carrieridge carrieridge is offline
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That's great

Sounds like you had a few bumps but things looking up. the whole process is so different for everyone. I kick myself for not reading up on it more when my husband did his. We should be celebrating his first "birthday" on November 24, but instead we are looking at having to do the whole thing all over again. they don't really talk much about the odds of losing the graft all together.

Carrie, wife to Mike (52). diagnosed with non hodgkins lymphoma 10 years ago, and has been fighting one thing or another ever since. auto-sct in 2008, developed treatment related MDS, allo 11/24/2-2014 with 10/10 match from brother. as of September 2015 only 4% donor cells. MDS status now at 8% blasts.
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  #5  
Old Tue Nov 17, 2015, 08:16 PM
Cheryl C Cheryl C is offline
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Ray - Great to read about your whole journey to date in one post. Thanks. It's an interesting account, and I'm impressed that you have been so positive, tenacious and courageous all the way through. How are you actually feeling right now?

Carrieridge - I'm really sorry to read that your husband still has MDS. That must be very disappointing, especially with such a good match. I totally understand that at his relatively young age you wouldn't want to be giving up. Will this be his 3rd SCT coming up or did he have a BMT November 2014? How is he feeling about it all?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #6  
Old Wed Nov 18, 2015, 09:56 AM
carrieridge carrieridge is offline
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CherylC

My hubby's story is such a crazy rollercoaster lol. He's feeling okay right now. We have dr appointment today. He was supposed to have an MRI a few weeks ago because of some stuff in his spine they saw on his CT. They did the CT as a pre-test for his upcoming DLI (which basically they are treating like a second allo). Needless to say, we did not do the MRI even though it was to be a sedated on (he's gotten so claustrophic over the years), so we ended up having a 3 week break from doctors appointments - which honestly I think he needed. Over the past 3 months, not only learning that he had graft failure, he got samonella poisoning, shingles on his eyelid and up his scalp, had a bone marrow biospy that showed his MDS went from RCMD to RAEB-1. We had "the talk" with his oncologist (he has 2 hemo's now, one for lymphoma (Dr. Pinter-Brown) and Dr. Paquette for his MDS, both at UCLA. We talked about quality of life versus longevity. My hubbys goal has been to see our oldest graduate (when he first got diagnosed with lymphoma, she was 6 years old), she's turning 16 on Dec 3rd. Dr. Pinter-Brown has always kept this in mind and so she did everything in her power to keep his lymphoma in check. He's relapsed so many times, been on numerous clinical trials, etc. So, back to our latest discussion with her, she said that quality of life and longevity are two totally different conversations and being honest she said that if our goal has changed and that quality of life was our new goal, then she would NOT recommend doing the DLI, because he WILL have gvhd, that will actually be part of the goal in doing it because he did lose his graft because of gvhd and the treatment for that. And she can't tell us how severe it will be or how much it will impact his quality of life. So, we did need time to stew on that one a bit. It's a hard discussion to have with your husband. We have three kids at home: Hannahs almost 16, Haylees 14 and Hunter is 11. I think those are three reasons my husband is willing to do all he can to stay around. I can't even imagine what he has to deal with emotionally when he thinks of not being around for his kids. Sorry this got so long, I really dont have anyone to talk to about this, it's hard to discuss things with his mom, because my husband doesn't want her stressing out. It feels pretty good even typing this.
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Old Wed Nov 18, 2015, 01:17 PM
rar rar is offline
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bailie,

My body seems to know when it needs more sleep to aid the healing process. At my worst I was sleeping up to 12 hours a day. Doctor thought that was good. I am currently sleeping 8 to 9 hours. I am still healing. prednisone interferes with sleep pattern so I am taking Lunesta and Melatonin which helps a lot. Before that I was getting 4 to 6 hours. Lunesta is the mildest and least habit forming of the popular sleeping pills.

I have a fitbit that monitors my sleep. It is a rough guide but seems to agree with how I thought I slept. Some nights it says that I have up to 5 hours uninterrupted sleep. Usually it is more like 3 sessions of 2 hours with other short periods.

I am still on transplant medications and recovering from GVHD. I have felt better in my life. All things considered I feel pretty good.

Ray
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Old Wed Nov 18, 2015, 10:26 PM
Cheryl C Cheryl C is offline
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Carrie - Thank you for taking the time to explain your husband's situation in such detail. I'm sure you aren't wearying anyone on this forum.

I can understand his strong will to live even more now, but balancing that up with the prospect of possibly severe GVHD means you have a really difficult decision to make. May God guide you both as you contemplate the choices you have. You are in my prayers.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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