New Member Welcome

[Neil Cuadra]

Pat,

I wish you and Ron the best of luck. The rent may be high but Stanford is a great place for treatment. I'm surprised that they are waiting another 6 weeks before the mini-transplant when the course has been set and donors are available.

Congratulations on the sibling match. Having two sibling matches is extra insurance. They might choose his brother over his sister if she has had children, but I'm not sure what other factors they consider if two equally matched donors are available. Perhaps you could let us know once they decide, since other forum members may wonder about the same thing.

Unlike many patients who don't understand what's happening to them and how drugs can help (or hurt), Ron's medical experience gives you an edge. His otherwise good health is another positive. There are ups and downs for just about every patient, but I hope he sails through the transplant with minimal problems.

I guess after 2 years you've accepted the apparent coincidence of both your father and husband having the same rare syndrome, but that's rather shocking to hear. You are right about the progress over the years. My wife survived her transplant for MDS/RA 12 years ago and the procedures are much more refined and the success rates higher now.

[ccpat]

Neil, Thanks for your response! Took me awhile to find it, since I'm "new" at this forum thing! Amazing, and wonderful that your wife survived transplant 12 years ago!!! That gives us courage! Having the "medical edge" is helpful, that's for sure, but doesn't always...help! Don't know why they scheduled Ron 6 weeks out, but doubt that we could get everything squared away much before then. Ron feels good even with Hgb dropping from 9 to 7 in about 3 weeks after tx. Platelets are now dropping faster, also--down to 23 last week. Thanks for this site and your encouragement.
Pat

[Neil Cuadra]

Originally Posted by ccpat

Neil, Thanks for your response! Took me awhile to find it, since I'm "new" at this forum thing!

Pat,

Here's a forum tip: go to your Options page, find the setting called Default Thread Subscription Mode, and set it to "Instant email notification". Click Save Changes at the bottom of the page. From then on, you'll be "subscribed" to any thread in which you post and you'll receive email if anybody else posts in that thread after you do.

The full details are in the FAQ.

[handyman]

Hi I am a new member. I live in the UK and currently receive kidney dialysis three times a week. I have been diagnosed with MDS. Does anybody have any information on vidaza being prescribed to a person on dialysis.

[renobabe]

well where to start In aug last yr we moved up to NY (Elmira)and we where there for about 3 months all the time it felt like I was In and out of the hospitals.There I had hi b/P 201\110 so in I go I have Type 1 Diabetic now for 25 yrs.well they saw that my blood count was low so they did a bone marrow test Not Fun and found That I have MDS ? ok whats this he said its a bone cancer I thought ok lets add another to the list. well we moved back to florida hubby lost his job and health ins too. well now I have this We are trying to get me on medacade and food stamps . but today they wanted to start me on a shot and it was free but admid fees 152.00 we dont have so We are in a pickle do u guys know about a shot called (ARANESP ). need to read up on this wow I talk to much . ty

[Greg H]

Hey Reno!

A good place to start reading is the AA&MDS International website here. You can also call them up and ask questions and get them to send you some booklets to read.

Other folks on this list know more about finding resources to help pay for therapy, they will probably chime in with that. MDS treatment is pretty darned expensive, so you'll need to work on the finances.

Aranesp is a synthetic version of a chemical your body makes naturally called EPO. Stick with me here, this gets a bit complicated. Your blood gets cycled through your kidneys to remove waste.Your kidneys have a kind of oxygen sensor in them that keeps track of how much oxygen your blood is carrying. When the oxygen is low, the kidneys crank out EPO, which tells your bone marrow to crank up the production of red blood cells, which carry the oxygen.

Some folks with MDS have kidneys that aren't putting out enough EPO, so Aranesp injections can make up the difference and persuade your bone marrow to make more red blood cells. That can prevent you from having to have transfusions.

Are you having transfusions?

Take care -- and be sure to check out the AA&MDS website.

Greg

[renobabe]

Hi Greg Thanks or the info I was told in aug of 2010 that I have MDS and I have had 2 trans both 2 qts. lol up in NY and just last month .Fri When I saw Doc he wants to start me on the shots ?. Im scared type 1 diabetic I guess he knows I am so I have read alot yesterday about this shot.not sure .Maybe there is a type 1 out there that can talk to me oh kidneys are small they said too. thanks PS How do I get all that info to put at the bottom of the page .

[Greg H]

Hey Reno!

You can put all the stuff at the bottom of your messages by looking for the "My Settings" link up near the top of the page. Once you click that, look for "edit signature" in the lefthand menu of the settings page.It really is worth putting in a summary of what you know so far, because it will help other forum members know what's up with you.

I'm not an expert on Aranesp. I have very high natural levels of EPO, which makes me not a good candidate to respond to Aranesp. I did have one shot of it before the docs figured that out and had no ill effects (no response, either).

As I understand it, Aranesp works for about 10-20% of folks with MDS, mostly those who have low EPO levels. But, when it works, it can prevent having to have transfusions. Do you know if you've had your EPO level checked?

Take Care!

Greg

[renobabe]

Hi New question Im a newbie Im trying to get disabilty SSI can I put down that I have MDS will it help or make it where I will get denided Is it something that I cant work I have 5 other medical cond but Im not sure on this has anyone put this as a medical cond for disabilty. thanks renobabe

[Polly S]

Hi,

My name is Polly. I am 30 and I live in the UK and was diagnosed with SAA 7 months ago. I am currently being treated with cyclosporin alone and so far, so good, my neuts and wcc have improved, so fingers crossed. This looks like just the sort of site I have been looking for, thanks!

XXXX

[tomcat]

I've been reading posts in marrowfoums since mum was diagnosed and decided to join! Haven't come across anyone from Oz yet! I'm having a very different experience with this disease compared to most I've read. Your posts have helped!! Thanks
Tomcat

[Neil Cuadra]

Originally Posted by tomcat

Haven't come across anyone from Oz yet!

Among the most active Australians here are members Chirley, Julianna, layla g, and Helen Robinson.

You might ask who else is from Oz in the Your Local Area forum or the Australia forum.

[brad4d8]

Hello all,
I just joined today was diagnosed with MDS about a year and a half ago and have been getting Vidaza treatments since September of 2010. I am looking forward to hearing of others experiences dealing with this syndrome. So far, I've been responding well to the treatments, with only my platelets slightly below normal range after a cycle.
Brad

[Christina Dans]

Hi! My sister has MDS and I am going to be doing a Peripheral Stem cell collection for her in a few weeks. I am so happy that I am a match for her, but I am still so nervous about the effects of the shots and the procedure itself.

Thanks!

[nurseAngie]

My mom just started a Vidaza clinical trial for her MDS that is being given orally. She finished the first round about two weeks ago and her counts are now lower than they've ever been. Wbc 0.6, hgb 7.3, platelets 9. She had to get another blood transfusion today and her first platelet transfusion. She's been receiving neupogen for the last five days and her wbcs went down. She has three weeks to get her wbcs up or she's out of the clinical trial. I don't know what to think. Should I be worried?

[danny g]

Hello,
My name is Danny and I have MDS.

[danny g]

I have had seven cycles of Vidaza by injection and my bloods have improved every month. Would anybody be able to tell me if I am doing harm by receiving Vidaza when my blood counts are normal?

[mausmish]

I had Vidaza treatments for 10 months post transplant with normal counts to help prevent relapse. I'm not aware of any potential harm. I also had Vidaza for 11 months pre transplant and my counts were normal for at least half of that period.

[danny g]

Thank you Mausmish for the info. How are you doing after the transplant? My counts were all normal right after the very first treatment of Vidaza. After seven cycles, the blood counts are still all normal. Does anyone know if there is a way to tell if I don't need Vidaza anymore. My doctor is afraid to reduce the dosage incase my body rejects re-introducing a higher dosage.

[mausmish]

Danny, I'm doing extemely well, thanks! I'm no expert but I'm of the impression that the Vidaza treatments usually continue until they quit working (or have some contraindicating side effect) or until one has a transplant. I hope others more knowledgeable will correct me if I'm wrong! For me, Vidaza felt like a miracle drug. I'm so happy it was available and worked for me. -Karen

[danny g]

Hi Karen,

I have terrible side effects from the Vidaza. I have skin breakouts, metal taste in my mouth and a raspy tongue. I just don't feel good after the injections. My injection sites are sore and swollen. Does anyone have the same sideeffects? Has anyone been taken off of Vidaza or has recovered from MDS? Thanks, Danny

[Darice]

Hi, Danny
I, too, have the understanding that Vidaza continues until it either stops working or you get a transplant. Unfortunately, my husband wound up in the hospital after his first three injections so was unable to continue. If it is working to keep your blood counts up, you are winning!
Probably your best course of action is to try to alleviate the side effects. I know that many have gotten relief from the skin reaction by putting evening primrose oil on the injection site immediately after the injection and then again every time you think about it. Use the vitamin/supplement gel caps: pierce one end and squeeze it on your skin.
My husband has been encouraged to rinse his mouth/gargle with baking soda & salt in lukewarm water after each of his chemos . . . I don't know whether that would help with the metalic taste and raspy tongue, but give it a try if you haven't already.
I wish my husband had been able to tolerate the Vidaza; his options for dealing with this are limited.

[rdavidp]

Hello I am David, caretaker of my wife Jaimie. I had a couple of posts before, but never an introduction. We went to the local hospital Jan. 12 due to some breathing issues. Initial blood work showed all three blood cell counts low. By Feb. 1 we had a diagnosis and were sent to John Hopkins the next day. Initial diagnosis was AML, but upon further review it was changed to MDS. My wife is 42 years old. We meet the first time with Dr. Carraway on Feb. 23, so at this time we do not know what treatment option we are going through or even what type and risk level of MDS my wife has. We live in west central Maryland.

Before all of this started, to us MDS stood for Multiple Dachshund Syndrome, which we also suffer from with having three of the little long guys.

[Sally C]

Hi David,
I am so sorry you and your wife are starting down this road. You don't have much information so all I can say is that if Dr. Carraway isn't an MDS expert or if you have any problems or doubts - or want a second opinion - you are close to one of the best facilities in the nation - the National Institutes of Health in Bethesda. My husband has been a patient of theirs since March of 2009 and I firmly believe they saved his life. The doctors are extremely accessible and the #1 Hematologist in the world - Dr. Neal Young - is over the hematology dept.
A sad welcome to the forums but it's a wonderful place for information and support. There are many very knowledgeable patients/caregivers who regularly post on this site.
Keep us informed and God Bless,
Sally
p.s. Although I have a Jack Russell "terrorist" now, I have had 2 Dachshunds and they are great dogs!

[triumphe64]

Originally Posted by rdavidp

Before all of this started, to us MDS stood for Multiple Dachshund Syndrome, which we also suffer from with having three of the little long guys.

Speaking of Dachshunds: I was in Santa Monica last week and I saw a guy walking a piebald dachshund. I had never heard of such a thing. He told me people stop their cars to talk to him about it.