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jga_socal
MemberKWJ, sorry for your loss.
Memberjaxem,
I’ll have to check out the cord sct option some more. I’m 200 lbs and wuz told that its diff to get enuf cords with a suitable HLA match for big people. Cord scts are usually done on people under 140lbs.
But, I’m seeing my 2nd op. doc in Duarte Thurs so I’ll put this on my long list of questions.June,
Gad! you’re not only your Dads advocate, you have enuf to go around to others in a forum! What an angel. Thanx for the kind words. Sometimes I could swear by your posts that YOU are the one with mds! Your compassion for you dad is awesome!
If your passion extends to your work as a lawyer then I have new hope for our justice system.
Your thoughts, research and ideas are always appreciated. It would be mind boggling trying to make life-altering decisions based solely on what ones doctor says. I’m learning that what doctors say can often appear to be influenced by legal and business concerns rather than concerns for whats best for the patient.
I say, the more people talking about mds, the better.MemberHey June. If they dxd RCMD then more than just his reds are affected. Your dads rcmd sounds a lot like mine. All 3 of my sc lines were low at dx, but the whites and plates floated up to normal after a few months, maybe it is the procrit halo effect?
No one can tell how long the progression will be, especially while he is on procrit. If not on procrit, or other meds, I suppose you could plot a graph of the increasing tranfusion requirements over the months and see the downward trend. But who wants to do this!? The defective stem cells have a proliferative advantage. This is the key mystery, as it is with all clonal diseases. The defective eventually push out the effective. I am also Int-1 with around 4% blasts, as of a year ago. My doctor guessed a 50% survival chance at 5 years. What is your dads age? If he is under 60, a stem cell xplant should be a possibility. If he is <60 and rcmd int-1 then the nccn mds guide says to delay a sct "until disease progression". I have an appt in Duarte next week to discuss this very subject. Delay? Or move the risk up front now with a sct? But lets face it, even with a successful sct, odds are that things will never be like they were when the stem cells were normal. Most sct survivors are destined to suffer from various severities of gvhd graft vs host disease. This might still be preferable.
Your papa is very lucky to have such an enthusiastic advocate. My 14 year old daughter and 16 year old son dont even ask me questions about my condition. Because of their age I dont fault them. But it’s for them I want to delay a sct, to perhaps see them thru the rest of high school.
JimMemberA young Indian gal who has bone sarcoma was in my chemo room tues when I got 2 new pints of blood. She swears that eating 1/4 of a fresh pomegranate daily boosted her plateletes to a safe level. we had a long talk. she has been totally into natural foods, teas, herbs, etc and her cancer scans are showing clear after 8 months of chemo and all the healthy foods.
MemberIf you were diagnosed with mds with a real low red blood count (hemoglobin level), you probably were well underway to iron overload at the time of dx. It takes some time, maybe years, to get to the point where you know something is wrong and get that blood test that shows anemia. During all those month or years with your low hgb count, the iron in your body had fewer hemoglobins to bind, so it would have gone into ferritin stores, raising your iron counts. Look at it this way, normal blood contains around .5 grams of iron per pint. The avg person with 16 pints is thus carrying 8 grams in their hemoglobin. If your HGB count was first found at 50% of normal (15) that means 4 grams of iron had no hemoglobin with which to bind, so it was socked away your Ferritin stores, starting to cause trouble.
When you get transfusions you add 1 gram of iron per 2 pints. That adds up very fast.
Insist on a serum Ferritin test as soon as possible! Until you know how your body is going to deal with excess iron, cut down on high iron foods and vitamins.
Regarding MD Anderson, I believe that is one of the highest ranked transplant COE in the country.
Regarding info. Make sure you go to http://www.marrow.org and order lots of free materials. I dont know who pays for this but the material is top notch and explains so many things about marrow diseases, transplant options and centers. A quick link to the page where you can order your free material is HERE
Be sure to get “Choosing a Transplant Center: A Patient’s Guide”. This large spiral bound book has ‘outcome’ statistics from all the centers in the country. You can shop around. Other materials include a financial checklist to help you determine how to afford a sct.
Marrow.org is one of the websites run by the National Marrow Donor Program (nmdp), the outfit that maintains the database of volunteer stem cell donors. If and when you decide to get a sct, the nmdp will search their database, and others, for your perfect match. 🙂MemberPatti,
“Hate to burst bubbles here, but it’s very precarious to say, “the blood itself is safe except….” They are unable to screen for multitudes of diseases and another person on this forum died from an infection he got from a blood transfusion. So, be wise.”Is it wise to not get rbc transfusions because you fear the 1 in 200,000 chance you could get hep-c from a donor? I think the much greater danger, as you wrote later, lies with the long term damage of living with inadequate hemoglobin. The chance of dying in a car accident is far, far greater than picking up a disease from todays blood supply. Each bag of blood (check this out) has written on it ‘May contain infectious agents’. My tx nurse usually scratches out the word ‘May’ and writes ‘Does’. She is such a joker.
JimMemberIf you’ve had Pancytopenia and not needed a rbc tx since you were 12 you must have a mild version of whatever is causing the pancytopenia. Sorry you find yourself in a position to now get benefit from this group.
Listen to your doctors. Hopefully you have an ‘engaged’ doctor that communicates options even outside of his traditional training. Since this is not likely, be advised that there is a wealth of anecdotal evidence provided by posters here. The best of the best indicates that your diet has a direct relationship to your marrow’s ability to make the various blood cells. I’ve had some success since I started trying ‘stuff’ starting last September. In a 5 month period I attribute my experimentation with food supplements to reducing my tx needs by 30%. I’ve read other people have had success too. You can search the posts here for info on that subject.
Iron Overload is a big issue for many tx-dependent peeps. Make sure you get a ferritin serum test early on to see what your iron levels are now. Then make sure you know how much your levels are increasing as you get txs. The blood itself is very safe except for the .5gram of iron you get with every pint. At some point you may need to look into doing something to treat the IO.
I posted an article I wrote on transfusions HERE . I think this article will clear up all your doubts.
MemberDoctors give up hope long before the loved ones. It’s all about statistics. My wife’s mother died last Nov. 5 weeks after a stroke. The Docs were suggesting the termination of life support early on. I guess they’ve seen it all so many times they can just sum it up and make that decision quickly. No emotional baggage weighing them down. Its been 3 days after your last post. I hope your step-mum is still making a fight of it. Its amazing to me the doctors removed chemo w/o family permission.
May your step-mum go with God.
JimMemberFolks this is spam. You can find the exact same first 2 posts on another forum HERE . Looks like an attempt to promote the website mentioned in the second post.
They sure picked the wrong forum to spam. Polyarthralgia (yes, they spelled it wrong) has nothing to do with the topic of this forum.MemberThanx all. First off, I didnt mean to exclude others from commenting. When I did a search on exjade it seemed like pattie was alays involved in every result.
My doc always answers questions with the bare minimum effort. I cant figure out if he is too busy to go into detail or he just doesnt know. He never did phone me back since I left a message last week. I got the Ferritin results 3 weeks ago while I was getting xfused. My doc was not around cuz I was in the chemo room. But you could see the anxiety in the nurse when she gave me the report. She knew the number was high but did not want to alarm me. I get the distinct feeling that the nurses there know a lot more than they will share with the patients. I’d love to pick their brains but they are concerned for their jobs.
I just watched 2 videos on iron overload at the aplastic.org site HERE . Pretty informative. Dr. Coats in video one says it takes years for IO to cause organ damage. But then he admits that is knowledge gained from their experience with youths who have other illnesses that require a lifetime of xfusions. They really dont know at what point irreversible damage occurs in older people.
I also downloaded the annual definitive paper on MDS published by the National Comprehensive Cancer Network (NCCN). That pdf is HERE . A couple points on this paper. Most of the iron overload talk is on pages MS-5 and MS-6. From what I can tell, my doctor, if he was following the MDS treatment guidelines, should have been monitoring my Ferritin must sooner than he did. He only ordered the Ferritin test because I kept asking him about it since last summer.
My second opinion doctors name shows up on page 2 of this pdf as a panel member. Maybe I’ll just have to start depending on her.Dr. Coats says you retain .5 gram of iron in every pint of blood you get xfused. So, I’ve had around 11 grams.
The nccn paper and other sources have mentioned an intriguing result of IO therapy. Studies have show that a small group of people, once their iron overload is brought under control, their bone marrow kicks in. Some of these people become xfusion independent (eg: pg MS-6 of the nccn paper). This result leads me to wonder if perhaps MDS can sometimes be the result of other problems, perhaps long term undetected iron overload.
Pattie, sorry about your mum-in-law. And, thanx for the feedback from the Naomi and the other posters.
JimMemberI visited Ashley’s carepage.
Gad! That not right! She is too young to get AA. She looks like a model. I figure old guys like me have had a good run and that’s life. But 20 years old and beautiful? Not right! She has her whole life ahead. I’ll be praying for her too.
JimMemberDang typo. correction: normal WBC range is 4.5 – 11.0
MemberCovergirl and Pattie,
Thanx for the posts. I am going to get a second op from another doctor at City of Hope in Duarte about the Ferritin. I saw her last July and she suggested I wait a year or 2 for a SCT. So far hers was good advice. And i’ll check out the juicing.My Dad (87 years old and doing great) started living with me in January so I started drinking a beer or 2 daily with him in Jan and up to my last CBC. So… now I’m on the wagon to see if the alcohol factors in to my last poor RBC count.
Maybe the RBCs that my marrow make are very ‘delicate’ and killed by alcohol? Who knows. The beer is the only thing I can think of that is diff. Prior to Jan I hadnt bought beer since the summer. I may have had a glass at a restaurant every now and then.MemberMy WBC & platelete counts rose while on procrit. DX Jan06 they were 3.10, 95 respectively. Weekly procrit since then and then food supps since Sept they are now 5.7, 221. Normal ranges are (4.5 – 100) and 130 – 400).
WBC count history: CBC=Blood report taken
Procrit only Feb06-Sep06: 10 CBCs, WBC Avg: 3.75
Procrit+Supps Oct06-present: 5 CBCs, WBC Avg: 5.04Platelete count history:
Procrit only Feb06-Sep06: 10 CBCs PLT, Avg: 130.5
Procrit+Supps Oct06-present: 5 CBCs WBC, Avg: 204My RBCs have a slightly diff story; rising, then taking a dive on my last CBC, Feb 20. I’m journaling that number in a thread I started months ago on this forum. I’ll update that post now cuz I think it may have been the (social) beer drinking in Jan-Feb. 🙁
MemberHi all. This is an update on the topic.
My Hgb finally went down to a level I havent seen since last september, 8.9. Then again, I was able to skip a transfusion 5 weeks ago so I shouldnt complain. Stretching my transfusion frequency to 10 weeks from 5 I can live with. I’m still taking the same supplements at the same levels. So, who knows why I’ve had such fluctuations? In discussions with my Doc, he has been unconcerned about my ferritin levels, even after i’ve had 23 pints over the last year. He says you have to get a lot more transfused blood before ferritin levels get dangerous. However, he ordered a ferritin test just to keep me happy. The test came back yesterday at 2743 ng/ml. Normal range is 22-322 according to the read-out. The nurse said she would ask him about the result tomorrow. Does anyone know much about what levels ferritin becomes dangerous? I heard exjade is very expensive.
Thanx,
Jim -
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