Jeff's journey with MDS

[julielucas]

Hi y'all! My name is Julie. My husband Jeff was diagnosed with MDS last week. He's probably going to start Vidaza soon, hopefully this week. Let me give you his background info first. He's 64, Vietnam vet, University professor. He was dx with Chronic Lymphocytic Leukemia (CLL) in 2006. Had an episode of blood clots in both lungs in 2008. Was on Coumadin for a few months. Went through chemo (FCR) and his CLL went into remission. In 2010 he had ATG for low platlets. He was checked every 6 months at the local cancer center. He seemed to be ok except he'd get very tired. He still managed to teach a full load, supervise student teachers, walk 3+ miles a day. He blamed it on "Old People's Disease". His had an oncology check-up on May1, 2014 and his doc put him on prednisone. He didn't know why, just his blood labs indicated the need. He also had a bone marrow biopsy on May 14. Stupid me did not go with him for the follow up after the prednisone was done. Last Monday he comes home and says that he's to start chemo (Vidaza) on Tuesday! What?! Then the oncologist, Dr. A, calls and tells him to go see his hematologist at Duke. We went on Thursday and he confirmed the MDS with ringed sideroblasts. No IPSS score or much info. So, I've been trying to get as much credible info as I can. There's a lot of scary stuff out there. One has to be very careful to choose good sources. I've learned more on this forum than I have from his doctors. Hopefully that will change when we see Dr. A and I get some answers to my questions. Here's Jeff's stats as of June 12. I would sure appreciate any info, links, advice- answers!
His dx is as follows: Hypercellular bone marrow 70% with erythroid and megakayocytic atypia.
~ 5% blasts
Ringed sideroblasts
His CBC report:
WBC: 2.1
RBC: 2.91
Hemoglobin:8.9
MCH: 30.6
Platelets: 28
I sure would appreciate it if someone could help interpret these findings. I know that low platelets with MDS is not good. We're sitting here waiting for the cancer center to call with his chemo appointment. It's impossible to call and actually speak to someone so I'll probably drive over there and see if I can get the ball rolling.
Thanks! Julie

[bailie]

Welcome. Firstly, I'm sorry for the diagnosis and wish the best for your husband. I have completed my 6th cycle of Vidaza and it has worked extremely well with very little side effects. Almost all of my blood counts are in the normal range now. Before I started the Vidaza the counts were similar to your husband's. It is great that you are proactive and searching for information. You will quickly find that everyone is different with MDS. It is just not a linear disease and that is one of the reasons for the difficulty.

Good luck. This is a great forum for questions.

[julielucas]

Thank you, Bailie. I'm sorry we have to "meet" under these circumstances. Right now my biggest problem is fear of the unknown. We were supposed to get an appointment with Dr. A and haven't heard anything since Thursday. It's very frustrating! One day the Doc tells you "Chemo tomorrow!" only to be postponed. I get so jealous when I read how all these folks have all this wonderful info pertinent to their own conditions and we can't even get a human on the phone at the Cancer Center! I realize we aren't the only ones out there that are in this boat. My husband is very angry that no one has called with his appointment but at least he has a class to teach tonight and can occupy his mind. Argh!!!!
Thanks for letting me vent. I'll bet there's a whole forum for venting : ) Oh I will be sure to put Jeff's "official" dx and info in my signature just as soon as we get one!

[julielucas]

Finally got a response from the cancer center. Dr. A is still consulting with the dr at Duke. Jeff will be seen eventually. We're both calmer now that we know we're still on their radar. I'll have to get my questions together. I'll post them in a new thread so y'all can add any I might have missed. Think I'll go finish painting the house now!

[bailie]

Julie,
I think you will soon find out that it is necessary to be proactive. At the same time you will quickly learn that there are very few (if any) absolutes with MDS and that makes it difficult for Drs. as well as patients.

p.s. Stay cool painting the house. I have daughters in Fayetteville connected to Ft. Bragg and I know it is hot. You can thank husband for me for his service in Vietnam. I was in Chu Lai AO.

[julielucas]

Thank you too, Bailie. Do you think your MDS is service related? I know Jeff's CLL is presumed but the VA hasn't listed MDS yet. Just got the call: he begins Vidaza 8 am tomorrow. That's such a relief. Funny thing to say about chemo but at least we know they haven't forgotten about him. He has some Zofran to take for nausea and I hope it works. He flew through his chemo for CLL- the only side effect he had was fatigue by the 3rd day. I posted a new thread re: what to expect at chemo. Probably put it in the wrong forum but if you have any advice, I'd appreciate it.
Re: house painting: it's pretty warm but I'm only doing window trim and it's in the shade now. So much to finish before the feces hits the air circulating device.
Julie

[bailie]

How will he be receiving the Vidaza? I get it with subQ shots in my stomach. There is very little pain if any. If he is getting seven days of Vidaza it is somewhat important to plan the shot locations. I would get three on one side and four on the other. The shots are much faster than IV. There will be a 1" x 2" red area that feels like a sunburn. The shots are not felt during the day and never caused discomfort for sleeping. But again, everyone reacts differently. It is the Zofran that causes some discomfort and constipation. Be very careful about that and get good advice from the doctor ... it is important.

The Vidaza has me feeling absolutely normal. It is never too early to start thinking about the pros and cons of getting a stem cell transplant. The Vidaza has unpredictable lengths of time when it is effective and can drop off quite rapidly. My counts started improving after the second cycle.

I don't think my experience in Vietnam had any influence on my MDS, but that is a complete guess. There is absolutely no way to prove it one way or another. I haven't found anyone else in my unit that has MDS.

[Caregive]

Julie, welcome here. I'm guessing since we had to wait too at different stages till we got established with a medical practice that can handle my husband's MDS that there is a backlog of patients and not enough doctors. We attend to his medical needs locally but did ask for a second opinion and were refered to Seattle and did that 6 months ago.

I bought a black date book sort of thing where I put in my questions, blood pressure readings, ferritin levels, details of blood transfusions. This little book goes everywhere with us for appts and just to have in case we are out of town. I write right in there the answers to my questions plus appts ahead.

There are meetings of groups for MDS and there are sessions put on by AAMDS which is the parent organization of this forum. There is also MDS Beacon. Plus I read on the NIH site and other cancer sites. I look forward to attending the MDS meeting Saturday at the Fred Hutchinson Cancer Research Center. There will be speakers all day and this is for patients and their caregivers. There are such meetings around the country.

Keep informed and go have fun too. You need that to be balanced.