[Chiparoo]

Chuck,

Got the same kind of MDS as you. pal! And I’m just as overwhelmed as you are! I’m sure a bunch of us feel the same way as you do. Your numbers are better than mine, though. Love to have my platelets at that number without having to get a bag or two of them every 10 days!

I’m responding to your post because you, as I, will soon receive an allogeneic transplant, probably in 2 or 3 weeks (what a Christmas present!). It’s great that your donor is related; success is greater with a related donor than with a non-related donor, the kind I will receive.

Your statement about “feeling fine” shows how “cunning” this disease can be. I’ve been hanging with this for about 3 years, and, all of a sudden, BANG! my platelets went from an average 70,000 to 22,000…all because of a contusion on my leg. Last week, I was hovering around 32,000, and BANG! Bloody nose! Platelets crashed to 10,000. The lowdown is, I don’t want die from a nose bleed!

I guess what I’m saying is that, yes, you may feel “fine” now, but the only cure for our disease is still a transplant. Sure, there are risks involved, but ultimately, what are the options? Chemo may sustain you for a while, but a BMT is still something you may have to face. Hopefully, you’re of an age that you can handle it;
I feel for our fellow members that are of an age that cannot choose this for an option.

I am currently on no therapy. Vidaza, which has worked for some, did not work for me. I have just become tired of bone pain, anemia, not having a bounce in my step, and the constant reminder through a nose bleed, bruise, or cut that I have a serious disease. I’m gonna do it because I feel it’s my best option, and I’m still young and fairly strong. I want to get old with my kids and my wife. I can’t tell you how long you can expect to feel good. It’s different for every one of us. And, as with some of us, your condition can change like BANG!…that. You may want to ask yourself if you want to wait for a platelet-crashing episode to happen in order to make a decision.

Good luck, and god bless,

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. Dx w/RAEB Aug 05. 2 rounds of Vidaza. Vidaza stopped 11/05 – no sign of improvement. Found bone marrow match, donor committed. Waiting for transplant date.

[Chiparoo]

Margaret,

I have followed your journey, as a lot of us have, and come away with one of the most important things that we all must remember – we are all loved. Luke is so lucky to have had your love, and you are so lucky to have had each other. But, that’s what love does – it heals, nurishes, and gets us through the hard roads that we must travel.

Thank you for all of your lessons and experiences you’ve shared through your numerous posts. And know that you have the love and prayers from all of us dealing with this challenging disease.

God Bless,

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. Unsuccessful month w/Thalidomide Jan 04. Dx w/RAEB Aug 05. 2 rounds of Vidaza. Vidaza stopped 11/05, no sign of improvement. Regular transfusions. Found bone marrow match and donor. Waiting for transplant date.

[Chiparoo]

Hope&Faith,

RAEB is “Refractory Anemia with Excessive (or increased) Blasts.” The percentage figure is for the amount of blasts. Blasts are leukemia-like cells. There are 2 categories, RAEB-1, 6% to 10% blasts, and RAEB-2, 11% to 20% blasts. Looks like your dad has category 2. People that have marrow that contains more than 30% blasts have acute myeloid leukemia (AML). Beyond that, is CML, chronic myelomonocytic leukemia. I have what your dad has, have found a donor, and am awaiting stem cell replacement.

The MDS Foundation has wonderful information. Take advantage of it. And don’t be afraid to ask your dad’s oncologist questions.
Information is truly power! I wish the best to your dad, you, and your family in your path toward healing. Keep the faith!

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. Unsuccessful month w/Thalidomide Jan 04. Dx w/RAEB Aug 05. 2 rounds of Vidaza. Procrit and Neulasta as needed. Vidaza stopped 11/05 – no sign of improvement. Regular transfusions. Found bone marrow match and donor. Waiting for transplant date.

[Chiparoo]

Jerry,

My hat is off to you! I’m afraid to admit that I get tired of all the “bad” news on this forum. I will NEVER put down a site like this that offers a place for all of us to share information and get prayers answered. But I have to admit, it feels rather grave at times. This disease is crappy enough than to feel even more down after reading some of the posts.

I admit. I have my down days. But I thank God that I’m a positive person and will fight this disease until it’s out of my body. I pray that all of you have something to be grateful for, so the focus can be on your healing and just how great life and living is. I have a wonderful wife and two precious little girls to give me hope every day of my MDS stricken life. Thanks again, Jerry, for starting a post that feels good and hopefully will last beyond the holidays. Have a turkey leg on me!

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. Dx w/RAEB Aug 05. 2 rounds of Vidaza. Procrit and Neulasta as needed. Vidaza stopped 11/05 – no sign of improvement. Regular transfusions. Found bone marrow match and donor. Waiting for transplant date.

[Chiparoo]

Viola,

What your dad is feeling in neuropathy. I was on Thalidomide for one month and suffered from this side effect. My oncologist took me off the medication immediately. The neuropathy, in some cases, in irreversable. This is unfortunate, because I was showing signs of improvement with the drug. Revlimid is the “replacement” for Thalidomid. It’s suppose to have fewer side effects. There are FDA issues at the moment that are keeping it from being released until after the turn of the year. This could be an option for your dad. Good luck!

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05.
2 rounds of Vidaza, Weekly Procrit. Neulasta as needed. Found bone marrow match and donor. Waiting for transplant date.

[Chiparoo]

Thanks for your feedback on memory loss. My mother said it’s the age thing too! I will tell you one thing about what’s happened to me over the last few years since being diagnosed, especially the last 2 1/2 months on treatment; I have an awareness about my body and its functions that I didn’t have before. So I know that my memory or concentration is not what it was. I find it curious that ALL of us, no matter what age, have experienced this. Hopefully, as we all get the treatment we need to be free of our disease, the functions will return. I get tired of going to the garage to get something and forgeting what it was I went out there for!

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05.
2 rounds of Vidaza, Weekly Procrit. Neulasta as needed.

[Chiparoo]

Dee,

I “mix it up”, having the nurse put it in a different location every day. Under the arms worked out for me, then I tried my love handles, but had a little bleeding with that. At least it gave my arms a break for a day! By the way, my platlets were 12,000 last Monday and I expected severe bruising that didn’t happen, just a little bit. I avoided the stomach this time because I had sunburn-like spots in both areas of injection.

I also haven’t done anything to treat the injection area – it usuallly clears up in a couple days. I’ll ask my oncologist when I see him this week. Sandy, as far as warming the serum, I believe they do that because it’s so thick.

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. 2 rounds of Vidaza, weekly Procrit and Neupogen.

[Chiparoo]

Diner,

Thought I’d share my experience with you, because I had lumps and the sunburn-like marks you’re refering to in my first round of Vidaza. I did NOT experience this during my second round of Vidaza, which I completed on Sunday. The difference? The nurses administered the medication slowly, probably twice the time that the clinic did during my first round. What a difference! No “burns”, minimal bruising, and hardly any lumps. So my advice to you is to have your nurses give your medication slowly.
Hope this helps!

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. 2 rounds of Vidaza, weekly Procrit and Neupogen.

[Chiparoo]

Andrew,

I was on Thalidomide for only a month. I suffered from extreme bone pain, anemia, and severe neuropathy. In fact, the “pins and needles” were so bad, my oncologist thought I’d had a stroke. Fortunately, after a CT scan, he found that I’d not had a stroke, but the neuropathy lasted over a year and a half after I was off the drug!

I’m in agreement with Neil – see if you can get on the Revlimid. After my experience with Thalidomide, I almost wish they wouldn’t recommend it for our ailment.

Good luck,

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. Currently on Vidaza, weekly Procrit and Neupogen.

[Chiparoo]

Sandy,
It was a month before I got a disability check. The delay was more with my oncologist than the state, though! I got a call from the state to clear up some info on the form, then got a check within 10 to 14 days. And no. I don’t qualify for medicare.

Kathyrn,
Thanks for the info from LLS. I have already applied and have received the forms for the $500 you are refering to.

Suzanne,
I didn’t know that some people have to wait 6 months to get a disability check. Outside of getting no compensation for the first 15 days, I guess I’m pretty lucky.

Thanks for everyones’ feedback. Hey, I’ve got am idea! Let’s buy a lottery ticket together and pay for our treatment with the winnings!

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6.Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. Currently on Vidaza, weekly Procrit and Neupogen.

[Chiparoo]

Stephen R.,

I understand your fear. The one thing that I can relay to you is to not panic about everything you read about our ailment. I recall the first story I read on survival gave me 2 to 96 months to live. What’s that all about?!? Is this in case you chose NOT to be proactive about your therapy? And the warning panels for some of these drugs they give us – check out the side effects for Vidaza! When I started to freak out about this info, the guy that administers my injection said to look on the back of a Tylenol bottle. You’ll probably find MORE warnings for side effects! This, no doubt, helped me feel better.

The bottom line is – stay informed, but don’t let yourself be overwhelmed by ALL the information. This forum is by far the best place to share your concerns and get information. This forum has helped me stay positive about my survival. We all have a lot to live for!

——————–
Diagnosed with RARS April 03. Unsucessful month with Thalidomid (nerve damage) Jan 04. Advanced to RAEB. Currently on 7 day regiment of Vidaza (2-3 times), weekly Procrit and Neupegin. Have had 2 platlete transfusions and 1 blood transfusion.

[Chiparoo]

Hi All,

I was told by my oncologist that Revlimid was going to patients that required regular blood transfusions. Also, to be on this drug, your WBC could not be dangerously low, especially if the platlet count is also low. He said that one of the side effects of the drug is that it intially brings these counts lower. Therefore, he put me on Vidaza just this past Monday. I’m not sure if I’ll get a chance to experience Revlimid, but for those who do, best of luck!

[Author]

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