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jeanswear
MemberHi all,
Sorry that I havent been around. Been dealing with the emotions of losing mom. Amanda, might I ask if you have/had any prolonged contact with benzene or dyed fabric? I think thats what caused moms MDS since she worked in a sweatshop. I would reccomend eating a whole pineapple a day. I would also say to drink Noni juice. I can tell you more about that if you want. My uncle (no blood relation to mom) was diagnosed with Multiple Myeloma and since he started eating a whole pineapple a day and 2 ounces of noni juice, his blood counts have been stable. Mind you, I am not a doctor nor do I profess to play one on tv. Good luck with the illness. I hope you have someone there to help you with things. You can email me if you wish.
Thanks
BebMemberEsme, please accept my family’s condolences on your loss. As we have recently suffered a loss to this terrible disease, we definitely feel your pain. Just remember that Hans is no longer suffering. There will be no more weak days, no more medicines, and no more poking and prodding. I am sure you all know that he loved you as he certainly felt the love you all gave to him. Now that he has lost his fight, it is our turn to fight on behalf of our loved ones. We must continue on and help the others that suffer.
God bless
BenMemberOMG it sounds like what I went thru. Hope, please know that you are not alone. I am in tears at present remembering how painful it is. Be there for him and wish him a joyous journey to be with GOD
GOD blessMemberI only ask this because I noticed someone on here with MDS that is 35 yrs old. Was just wondering.
ThanksMemberMy mom had MDS for 10 + yrs before she succumbed due to leukemia. So yes, don’t be discouraged. Keep a positive attitude. And ask for 2nd and 3rd opinions if it makes you feel better.
Also don’t be afraid to reach out to people on here just to vent. It helped me out alot. I don’t post much anymore since mom passed. But I do try to keep up with whats going on.Good luck with the battle Susan. It’s a long and arduous one.
MemberHang in there Hans. All my best.
MemberGo for the Revlimid!
Do NOT go for the trisenox treatments if the docs offer it. All it did was make my mom weaker
MemberBrenda, please contact Celgene about that directly. There was talk about them working with patients that cannot afford the medication.
Celgene Corporate Headquarters
86 Morris Avenue
Summit, NJ 07901
(908) 673-9000Sugarwhale, Viola is in the same position that any of us would be in if the med was approved in the EU first. Remember, most meds get EU approval first and everyone tries to get them overseas. This time the role is reversed. Biotechs can only apply for approval in one country at a time.
Hope this helps
BenMemberJust wanted to share a few words with everyone. These were on the prayer cards. Everytime I read this, I feel her love.
SAFELY HOME
I am home in Heaven, dear ones:
Oh, so happy and so bright!
There is perfect joy and beauty
In this everlasting light.All the pain and grief is over,
Every restless tossing passed:
I am now at peace forever,
Safely home in Heaven at last.MemberEddie, please accept my condolences on the loss of your dad. As you may have read, we lost mom on Saturday and are dealing with the loss. I just got home from the wake and am spent. But I smile because of all the love I felt on here.
Eddie, don’t mourn his death, but celebrate his life and smile in the fact that he is no longer in pain and is now in heaven.I share your pain my friend, I share it well.
God Bless
BenMemberWelcome Maggie.
My mom has MDS which has progressed to AML. Juicing pineapple seems to help. She drinks 1/2 a pineapple with whatever pulp the juicer includes. Her platelets havent gone up, but they also stabilize when she is on it.
Also, Sugarwhale and I seem to be strong proponents of Essiak Tea. One other thing you may want to look into is Noni Juice. You can drink the juice (mixed with the pineapple) or the caps.
In regards to alcohol, mom was never a drinker so I can’t give you an opinion on that, other to say that alcohol does thin out the blood a bit. I wouldn’t reccomend it.
Ask your hemotologist about Revlimid. It should help (my non-medical opinion)Good Luck with the battle.
BenMemberMom supposedly now has AML. Her hemoc won’t even try Revlimid because she doesn’t beleive it will work. Trying to get another hemoc to look at her. Mom is 73, lucid, can walk somewhat unassisted, eats well. Transfusion dependant for platelets (every other day). Her hospitalist and hemoc want her transferred to hospice. In fact, her hospitalist asked me yesterday if i had made a decision as to when i want to take her home. My answer to her was “we are transferring her to another hospital that has real doctors willing to treat patients”. For obvious reasons, she isn’t too happy with me. Maybe if she hadn’t said “you have to stop researching this illness and just make your mother comfortable” things might have been different.
Sorry, needed to ventMemberRevlimid is approved!
SUMMIT, N.J., Dec. 27 /PRNewswire-FirstCall/ — Celgene Corporation (Nasdaq: CELG – News) announced that the U.S. Food and Drug Administration (FDA) granted approval of REVLIMID (lenalidomide) which is indicated for the treatment of patients with transfusion-dependent anemia due to low- or intermediate-1-risk myelodysplastic syndromes (MDS) associated with a deletion 5q cytogenetic abnormality with or without additional cytogenetic abnormalities. REVLIMID will be available through a REVLIMID Education and Prescribing Safety Program, called RevAssist(SM) via contracted pharmacies.
MemberOk i wish i had heard this sooner. I ordered two jars of brewed tea for my mom, but now upon reading this i actually stepped foot into a health food store (never knew they had those since i am nutrionally impaired) and bought the caplets. Hope they work on my mom.
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