Is there anything positive?

[bobderek]

My wife came back from the hematologist after hearing that she certainly had MDS and is now awaiting the bone marrow for final confirmation. He is very good and he was very sure. She will not be a candidate for bone marrow transplant. I have been feverishly looking on line and I can’t find anything that is really positive. Has anything happened in the past few years to to crteate reasonable hope for more positive outcomes.

• This topic was modified 8 years, 4 months ago by bobderek.
• This topic was modified 8 years, 4 months ago by bobderek.

[LeAnn Duke]

Bob, Can I ask what age your wife is and at what type she has when you find out. If she is over 70 a lot of Drs won’t do transplants. I have MDS and am low risk right now so I am transfusion dependent at this point. I have been getting 2 units once a month since June of this year. There is an injection called Aranesp/Erythropoietin that is supposed to help the bone marrow to produce more RBCs, but if her WBCs and platelets are already involved and she is considered intermediate or high risk they may choose to use another med that is a mild chemo called Vidaza that is also supposed to help the bone marrow to produce RBCs. Of course each doctor is different so I don’t know what her doctor will suggest. Much of this, from my limited knowledge, depends on the type of MDS and the stage and the percentage of blasts (cancer cells) there are present.
I have spoke with a woman whose husband was diagnosed at 72 and was not eligible in our area at the larger hospitals for a transplant. He underwent chemo for two years and the treatments neither helped him or hurt him. He remained about the same. They did their own research and decided to go to MD Anderson Cancer Center in Houston, TX (They are on the cutting edge of cancer research). They have doctors there who only deal with MDS. They went there because MD Anderson does transplants on patients older than 70. They put him on the list and while they waited for a donor, they asked him about a clinical trial chemo drug to see if he was interested. He and his wife discussed it and decided to accept the offer and they started him on it. He had one transfusion just after he started the trial drug and that’s the last one he’s had (he had already had 94 transfusions). That was 7 years ago and he is doing very well. He is in his 80’s and his wife said there were very few minor side effects to the chemo drug. His White blood cells and platelets are normal and his RBCs stay at about 12 which is just below normal for a male. They are both thrilled with the results and he is living his life and doing the things he wants to do. As I understand it he recently underwent back surgery is and doing well.

I don’t know if this will help, but it is some positive news for those who are not a candidate for a transplant because of their age. Will pray that all goes well for your wife and that you can find some answers that can help her to live a longer and more healthy life.

[bobderek]

Thank you so much for your reply. We are just learning about the terms and levels and it is great that you are low risk. It is gratifying to hear about someone who went through a trial at MD Anderson seven years ago. My wife is with a specialist, and it is a matter of waiting now for the bone marrow test results to come back. As I understand it that will point the way. I avoid asking again for details but she said that two of the three blood counts that matter are good enough for now. So its waiting and gathering information and trying to get very recent reports. Much of what is on line seems old and your summary of things is extremely helpful. I will pass it on to my wife who does visit this site.

I will post her results here, although it apparently will take more time than usual during the holidays. Two weeks ago I had never heard of MDS and now it fills my world and makes me appreciate what I have. It is scary stuff and we hope for the best and prepare for the worst.

Thank you again and I hope that the current research will help free you from even the mild form of this.

Bob

[LeAnn Duke]

Hi Bob,
It does sound like her MDS is similar to mine if it is only the red blood cells involved. Mine is called refractory anemia with ringed sideroblasts. Basically that is that only the RBCs are involved and the white blood cells and platelets are normal as of now. The ringed sideroblasts from the way I understand it is that the RBCs that are living after they are produced are abnormally shaped and abnormally large and they have rings of iron deposits around them. My iron level is high and the level of blasts (cancer cells) is below 5% which is why I am in the low risk category.

May I ask again her age and why she is not a candidate for bone marrow transplant?

We will keep her in our prayers and let us know how her biopsy comes out! Hope you all have a happy New Year!

[bobderek]

Hi:

Thank you so much for you kind thoughts. My wife is 70. The discussion my wife had was unexpected to say the least and I find that I am not sure what we know and what we do not know. Her specific recollection and the conclusions she drew are harder to separate. The only thing I am sure of is that the bone marrow test will be the deciding factor in her diagnosis. We hope for the best in the full knowledge that nothing can change what is in the sample they drew. I am so pleased for the level of your diagnosis and please accept our thoughts for a happy new year and hope in 2016.

[L.aura D.]

Hi Bob, I am sorry to read that your wife has MDS. My prayers are for your wife to have successful treatment and full healing! It is very scary reading about the disease when you get this news. My mother was diagnosed July, 2009, on her 74th birthday. As you move forward there is so much to learn and discover before a treatment is decided upon. The biggest shock to us once treatment began was the constant lab tests. We did not realize there would be a lot of follow up during and after treatments. It is a wild ride. I can honestly tell you there are positive things to look forward to. You might just find them in the little things, but they are there.

It has been a long journey, not without trauma and drama, but my mom is still with us. Her problem was low platelets (count was 77k when diagnosed). She was “too old” for a bone marrow transplant. For the first 18 months she received only supportive Procrit shots to help boost her red count. January 2011 her platelets fell below 40k and thus began the first choice of chemo; it didn’t work. The second plan of treatment, very intensive, didn’t work. She has received blood and platelet transfusions for 5 full years (at least 600 units of each). She has received the benefits of many faithful prayer warriors who pray for her daily. Her journey has been exhausting but her story is miraculous.

She’s not cured. Her blood counts remain “tanked”. She is vulnerable to every germ, every day. Her doctor sweetly says, “You’re doing so well since I stopped treating you.” And if not for the blood and platelet donors, she wouldn’t be doing well — She couldn’t be here without them.

She has hated the hospital stays (once for 7 straight weeks) and all the ER visits (we have to take her if her temp reaches 100.3 degrees). She has lost her her eldest daughter to cancer (was 56) and her husband to natural causes (was 87), her sister, sister-in-law and best friend along the way. But!! She has spent quality time with every family member. She lights up any space with her sense of humor. She is finishing up my dad’s business deals since his death. She has been an example to her daughters, grand children and great grand children with grace in the face of cancer, loss and grief. She has embraced the regular trips to the doctor and blood checks. She and her story inspire nurses and patients alike at the hospital and cancer center. And she gives a silver bracelet with Philippians 4:13 to every new woman she meets at the cancer center. She lives by the verse “I can do all things through Christ who strengthens me.”

Every one will have a different story and outcome. God bless you and your wife!! I pray you will find joy in the journey.

[LeAnn Duke]

Laura,

What a beautiful story! God bless your mom as she continues on with her battle and you as you help take care of her!!

[LeAnn Duke]

Thank you Bob for the information about your wife’s age. I understand now that because of her age, in the eyes of most doctors, she would not be a candidate for transplant. Ha she had the bone marrow biopsy yet? If not you may not know that she can request to be put under with the twilight sleep so she doesn’t feel a thing when they do the biopsy. They are painful even though they tell you that it’s just a little needle going into the bone. When I had mine I insisted they put me out! If she has had it already and ever needs another, she might want to consider being put out even if the doctors scoff at the idea.

Please know that we will keep her in our prayers for some positive news and successful treatment!

[rar]

I was 73 when I had a transplant. Age was never discussed before the transplant. After the SCT my doctor said if in good health transplants on people up to 80 are fairly routine. My transplant was a year an a half ago. Except for a bad case of GVHD which is mostly resolved I am doing well. I had a fair number of doctor visits and tests. It involved over 500 claims to Medicare.

Ray

[L.aura D.]

Now *THAT* is positive news!! Ray, you are so blessed. I am so happy for you. I pray that your good health continues. See how individual all this is? City of Hope in Southern California agreed 100% with my mom’s course of treatment. Whatever your specific diagnosis was, it is thrilling you were able to get the SCT.

Your post does cause me to wonder how many Medicare claims have been submitted for my mom since 2009. Wow-wee!

[jane]

I am 66, and I was told yesterday that I need a bone marrow biopsy to rule out MDS because my blood counts are low. I have had radiation and chemo for two different cancers–breast cancer 18 years ago, and tonsil cancer 14 months ago. It is good to know that you had a transplant and that you are doing well. I still have private insurance through my work, but I would like to know if Medicare gave you any problems in covering your costs. I have heard that Medicare will sometimes not pay for transplants. Thanks. Jane

[rar]

Medicare can be a problem. I have read that Medicare will only pay if you participated in an approved clinical trial. I was part of an approved trail. Medicare denied the $300K for the transplant but had no problem with the other $1M. The hospital appealed and the transplant was covered. It is best to get pre-approved. I have had other procedures denied because the doctor’s billing clerk refused to code it properly. Since my donor was related I was responsible for all her expenses.

It may be outdated see http://www.medpagetoday.com/PublicHealthPolicy/Medicare/21566

Ray

[Kellie DeVito]

HI Ray. Glad to hear you are doing well. Where did you have your SCT and was it a related or nonrelated donor? GvH disease is really what is keeping my dad from doing this. He’d have to have an unrelated donor match as he has no siblings and I am likely not a match for him.

[rar]

There is no chance of your being a full match. You may be a haploid match if you inherited the proper genes from your father. Some places do haploid transplants if no full match is available. There is also cord blood transplants.

My donor was my sister. The match proves we had the same mother and father so we are related. The transplant was done at UCH (Aurora CO).

I had GVHD twice. The first time along with CMV and c.diff it almost killed me. the second time it was a moderate to severe case. It was controlled with drugs and I did not suffer much. That was 6 months ago and I am still on the drugs.

When I was diagnosed with MDS RAEB2, the high risk form I had a 50% chance of living 5 months with a 3 year survival rate of 4%. I was given an experimental drug that in 2 months reduced my blasts from 14% to 2%. The doctors told me that no drug cures MDS, after a while they stop working. I was healthy (for a 73 year old) so I was told have the transplant when you are in your best health. If you wait the chances of survival diminish.

Ray

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