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rar
ParticipantAlmost as good as a full one for old geezers. I had a mini almost 4 years ago and it cured my MDS. You can google, there are lots of references.
Ray
ParticipantAs a condition for a transplant most centers require that you have a full time care giver, so yes you need housing for the caregiver. The places we looked at had provision for an in room care giver. The place we stayed at had 1 or 2 bedroom apartments that had 2 to 6 occupants. They had bedroom with linens, bathroom and a fully stocked kitchen, internet, etc.. All you needed to bring was clothes. Diner was served on community dinning room or as room service. Some of the daytime entertainment included trips to museums, VIP seating at pro baseball and football games, dinner playhouse, DVD’s, etc.
A transplant is not to be taken lightly, it is risky and frequently has bad side effects, but it beats the odds by a country mile of not having one.
Ray
ParticipantMy experience was that I had to be within 15 minutes of the hospital for 90 days past the transplant. I was in the hospital for a week past the transplant. The 90 day restriction could be at home, in an apartment or hotel. I was also able to find two places a mile from the hospital that will put up transplant patients for free for as long as necessary. They have high standards of cleanliness. We met people who had been there a year. The hospital would only do a transplant if you had a full time care giver who was committed for the duration.
My transplant was at age 73. My blasts were 13%. I went on a clinical trail and blasts went down to 2%. The doctor told me that all drugs are only temporary and should have an immediate transplant if I wanted to live. Transplant was successful and I am still alive at almost 4 years. I did suffer from GVHD. Imbruvica is finally helping with the GVHD so maybe I can lead a normal life again.
Ray
ParticipantI had a transplant 4 years ago at age 73 for MDS RAEB 2. At the time 3 year survival was 4% with no transplant and 60% with transplant. Transplant cured the MDS but I have GVHD as a side effect. I would do it again.
Ray
ParticipantEvery case of MDS is different. I had a SCT about 4 years ago. Of that time I absolutely needed a full time care giver for about a year and a half. Hope for a compassionate employer. Your spouses has to be the first priority. I wish you well. My MDS is cured but GVHD is still a major problem.
Ray
ParticipantHi Donna,
I am 77 years old. Graft Versus Host Disease (GVHD) is a disease where the transplanted cells see me as being foreign and attack me. It is a leading cause of death after an allogenic (not self) transplant. My eyes, skin, mouth,, and throat are under attack.
MDS is not common. A local oncologist sees few patients with it. Get a second opinion at a transplant center.
Ray
ParticipantDonna,
The hematologist / oncologist who made made the initial diagnosis is still my local oncologist and I will see him monthly forever how ever long forever is. I trust him, I think my blood number changed very rapidly. I saw a second oncologist who said in a busy year he would see one MDS patient. I got a second opinion from a VA doctor. She agreed with the diagnosis but told me the waiting list was so long that i would die before my number came up. I saw two transplant doctors who pretty much agreed on treatment. I did not go with the one who I had a slight preference for because I was under treatment from the other one and was in a phase one clinical trail. The drug I was on reduced blasts from 15% to 2% in two months. the transplant doctor told me do the transplant asap while still healthy, no drugs will give permanent remission. My brother in law, a retired oncologist consulted and pretty much agreed with the treatment plan. I had the transplant June 1 2014. I had complete remission in 6 months and have been plagued with GVHD and drug side effects ever since. I am glad I did the transplant and would do it again. Depending how you count I had 6 opinions. I wish all you well.
Ray
Participant3 years ago I was told that I had pre mds so mild it would never need any treatment. 3 months later I was told I had mds raeb 2 very high risk. 3 months after that I had a transplant. Another 3 months the mds was in remission but I have gvhd that still plagues me.
Ray
Participanti had a diagnosis similar to yours. I had related donors so it only took 2 months to get a SCT. That was 3.5 years ago. I am in remission but still fighting GVHD. Got a second opinion asap. You are on the cusp of AML.
Ray
ParticipantI was diagnosed with MDS so mild it would never need treatment. Four months after that I had a transplant for MDS RAEB 2 very high risk. Get a second opinion.
ParticipantHas he considered a transplant?
ParticipantHi Arlene,
My first choice would be to contract Natco and ask who reputable pharmacies for their product are.
The second choice is a google search (Lenalid Natco) with results such as http://sastimedicine.com/salt-alternatives/10714-1586231/Lenalidomide-25mg-Price-Dosage-Side-Effects-and-Generic-Alternatives-its-cost and research them to see if they are legitimate. They have 30 tablets of 25 mg. for $287.
Ray
ParticipantI have purchased Thai and Indian origins with no problems. If it is from a reputable manufacturer and the retailer passes the same criteria it is likely to be OK. If you are a SC disabled veteran it is free from the VA. India has different IP laws,
Ray
ParticipantI have had 4 bone marrow biopsies. If they give local anesthetics and they use an electric drill it is not as painful as a bee sting.
A BMB is the primary tool to diagnosis of MDS.
I was pre Vietnam, I had benzene exposure and MDSREAB2. It took the VA a year to deny my disability claim. It will take an estimated 2.5 years to see my notice of disagreement.
I don’t understand what your questions are.
Ray
ParticipantIf you are worried get a second opinion. The cure for MDS is a stem cell transplant which is used on high risk MDS.
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