New to the forum — our story

[MJM]

Hi Everybody,

I’ve been popping in here occasionally for months, and I thought it was time for me to say "hi" and post our story. My husband is 66 and was diagnosed with RA in October ’08; he had many abnormal chromosomes, but only 1% blasts. All three blood cell counts were low, so his doctor started him on Neupogen injections (300 mcg., 3X/wk) and he began receiving RBC and platelet transfusions. For a while the transfusions were only needed every three weeks, but soon his platelets and hgb started dropping more rapidly following transfusion. Platelets were dropping to 5 within 3 days, and hgb down to low 6’s after only one week. He was experiencing blood blisters in the mouth, nosebleeds and hemorrhoidal bleeding on a regular basis. At some point he was started on ProCrit; initial dosage of 3,000 units 3X/wk., then increased to 10,000 units 3X/wk. and again to 15,000 units 3X/wk. In February ’09 he experienced a focal seizure of the right arm and was rushed by ambulance to Emergency. They diagnosed bleeding in the brain, apparently triggered by low platelets.

The bone marrow biopsy was repeated in February, and it showed significant worsening of his condition in that four month period since diagnosis. The blasts had increased from 1% to 10-15%, so his diagnosis was changed to RAEB-2. He was started on Vidaza, and is now in the middle of the sixth cycle. After three or four rounds, his blood counts started to show some improvement, and he was actually able to go 18 days between RBC transfusions two times in a row. He was still needing platelets weekly, but the count was only dropping to 12 or 13 after a week instead of 5. He was feeling stronger overall, and we were very encouraged and hopeful that the Vidaza was beginning to work.

But after about a month of improved counts, they started dropping again and he’s now back to weekly transfusions of both RBC and platelets. The hgb is dropping to 7.5 or so after a week, and once again the platelets are dropping to 5 or 6 after just one week (and that’s after getting two bags of single donor platelets). Today his platelet count was down to 4 after receiving two bags just four days ago. We are now concerned that he is becoming refractory to the platelet transfusions. The blood blisters in the mouth and the hemorrhoidal bleeding have also returned. His doctor told him today that since the Vidaza doesn’t appear to be working, he’ll probably discontinue it after this cycle. They haven’t repeated the bone marrow biopsy, so we have no idea what the blast situation is right now.

I came across this forum during one of my many online searches when my husband was first diagnosed. It’s a wonderful source of information and support, and I’m so glad I found it. We’re doing our best to remain positive but it’s increasingly difficult when the news keeps getting worse. I have several questions but will post them separately rather than adding to this already long posting. Thanks for your time!!

Mo

[Mary4Mike]

Welcome Mo!

Please post your questions! You can usually find answers here. Reading about and sharing experiences with each other is priceless!

So ask…..

Mary

[Esther]

You’re having it tough by the sounds of things MJM. What is puzzling me about this disease is the way that someone who seems perfectly ok apart from a few minor ‘hiccups’ – like most of us experience from time to time= go to the doctor, and unlike we lucky ones emerge lots of tests later with a life threatening disease.

Thanks for your input. I am Cathie’s Mum who has posted elsewhere in the forum – and I am finding this site helpful in trying to understand what it all means and getting my head around what was a complete unknown to us a few short weeks ago.

You and your husband are fighting the good fight – my most sincere warm thoughts are with you both – and thank you for posting your story – it was a valuable aid to trying to comprehend this disease.

Renée

[jaxem]

Hi, Mo
Being your husband is 66, I’m a little surprised that they didn’t talk about a chemo protocol (MEC, etc.). What have they said about a transplant? Is there a donor available?

[MJM]

My thanks to all of you for your responses. Joseph’s situation has worsened since my original post; he doesn’t seem to be holding on to platelets at all anymore. The count is consistently dropping to 4 after only three days, and the nasal bleeding has started up again along with hemorrhoidal bleeding and blood blisters in the mouth. He has had six cycles of Vidaza now, and the doctor said since it hasn’t helped with the blood counts that we might as well discontinue it. We asked him to repeat the bone marrow biopsy first to see exactly where we stand; we were very concerned that his blasts had increased to the level of AML.

The BMB was done last Friday, and the doctor said there were only "a few" percent blast. (The one in February had indicated 10-15%.) To me that was an indication that the Vidaza is working, but he said the determining factor of effectiveness is a reduction in transfusions, and that has definitely not happened. He still needs red cells weekly, and the platelet count continues to drop. So his feeling is why continue the Vidaza, since it can lower the counts even more. I don’t have the cytogenics results yet, so I don’t know if the situation with the abnormal chromosomes has changed at all. (I’m hoping to get a printed copy of the complete biopsy report next week.)

I asked his doctor about trying Dacogen, and he said that it’s very similar to Vidaza so he doesn’t think it would work any better. I also asked him about Revlimid, since I’ve read that it has shown some success in non-5Q minus patients. He said the percentage of success in those cases is extremely small.

Right now the platelet count is of critical concern. The Neupogen seems to work pretty well at keeping the WBC and neutrophils at acceptable levels, and even though the ProCrit doesn’t seem to be helping with the red, at least he can continue to get the RBC transfusions. He had a terrible reaction to pooled platelets so he requires single donor, and the VA Hospital where he is treated cannot always obtain them immediately from the Red Cross. It’s going to be even more difficult now that he’ll require two bags twice a week.

Jack, you asked about the possibility of bone marrow transplant. Joseph has three brothers, and none of them were a match. We haven’t pursued the possibility of an anonymous donor because of the significant mortality rate for somebody his age (66); we were told that only one in ten would still be alive after one year. Joseph doesn’t feel that a success rate of only 20% warrants a 90% risk of not even surviving the procedure. Of course the last time we really discussed it was at the beginning of the Vidaza treatment, when we were still so hopeful that it would work.

The only chemo protocol that has been discussed, other than the Vidaza, was what he would have been facing if his disease had progressed to AML. The doctor said he would have had to immediately start Ara-C. I’m not familiar with MEC; is it a treatment for MDS? I would be very grateful if you could explain what that is.

This forum is such a wealth of information and experience. It would be helpful to know if anybody has had similar experience with Vidaza, and if a subsequent switch to Dacogen met with any success.

I would also like to ask if anybody has tried Neumega, the growth factor for platelets. We tried it in early March, but Joseph developed some shortness of breath and chest tightness, so it was discontinued after just three doses. I was never totally convinced that that was the right decision, because the third dose, which was given in the hospital, caused no symptoms at all. Given the situation we’re facing now, Joseph and I are thinking that we should give it another try, and we plan to talk to his doctor about it on Monday. It would be very helpful to know if anybody here has had personal experience with it, or knows of any current research on its effectiveness. The studies I’ve read about are several years old.

This is such a complicated and frustrating illness, as everybody here knows. We’re trying so hard to remain positive, but it’s becoming nearly impossible. Thank you all for being here.

Maureen

[katydid]

Oh Maureen – I have not even been offered any drugs yet but have a meeing with doc on wed to see where to go next – so I can’t offer any words of wisdom but only that we all fight the good fight together xxx
ps how do you all get that line under your posts with all the numbers etc happening – I can’t work out how to do it – but my mum has – and she puts inspiring quotes – not numbers !!! god bless my mum ah ?? xx

[MJM]

Hi Katydid,

Thanks for your post. Yes, we are certainly all fighting the fight together. Joseph’s platelets were down to four again today, after only three days. His hemoglobin was down to 6.3 after a week, so we go back tomorrow for three bags of red and two platelets. The doctor said we will discontinue the Vidaza; we’re praying that will allow the counts to rise a bit.

The info. at the bottom of my message is my "signature", and is set up in your profile. Click on "My Stuff" above the forum messages; choose "Profile"; then scroll down the page to "Signature" and you’ll see a box to type in whatever you want to appear on all your postings. You’re limited to 255 characters (including spaces, I believe), and you can click on "Preview" to see how many you’ve used and how your signature would appear. Whenever you change your Signature, it changes it on all of your messages, including those you’ve previously posted.

Thanks again.

Maureen

[jaxem]

maureen
i’m curious where those "success" rate figures came from. having a sib match doesn’t carry any increased chance for success than getting a matched unrelated donor (MUD). The figures I’m familiar with is that 1/3 achieve a 3 year success, 1/3 fail, and 1/3 die. of course, this is based upon a patient is reasonably good health and age 65 or less. It absolutely is a devastating illness.

normally, ara-C isn’t given by itself. They combine Mitoxantrone, Etoposide & Cytarobine (ARA-C) for the protocol and it’s given over several days. Then you wait until the body recuperates and do it again. the point I was trying to make is that a MEC regimen is performed on patients less than 70. my wife only had the 1st cycle (induction) and never made it to the 2nd (consolidation) because of the terrific hit it had on her body. She had to switch into something milder such as vidaza, then dacogen, etc. seems like your husband’s diagnosis is RAEB-2, the same as my wife’s. you should query the docs on using chemo. Please understand that I’m pushing chemo because I would be thinking transplant, but if they don’t think he would survive the pre-transplant chemo, then that’s another issue. then there’s the matter of finding a donor, too. good luck to you & your husband.

[Mary4Mike]

Maureen,

I too am curious about those "success" rates. My husband is 64 and is planning to have a low dose chemo allogeneic stem cell transplant in September. As you can see, we are also from Michigan. We met with the transplant teams at Karmanos in Detroit and at the University of Michigan. We are going to the U of M because he can return home once the transplant has engrafted and he has stabilized. We live too far from Karmanos and we would of had to rent a home for 4 months during the critical time.

We were told at both centers that he has a 10 to 20 percent chance of not surviving the transplant. We have chosen to look at it that he has a 80 to 100 percent chance of survival. His sister is a perfect match and we were told that holds a better chance of engraftment……less DNA differences. He has no other health issues and if you could look at him, you would never know he has this disease.

As you can read from my signature, he did Vidaza with success. He had a 12 month reprieve from TXs. Dacogen and Revlimid did nothing to help him, BUT our doctor was WILLING TO TRY every option available to an MDS patient. We are grateful, because it helps us to make this transplant decision. He has had 130 units of PRBCs and on his last biopsy there were changes in his cytogenetics. The concern now is total bone marrow failure or transgression to leukemia. We don’t want either of those to happen so we are opting for this chance.

When we first started down this MDS road many years ago, we said that transplant was totally out when we heard the "survival statistics". Things have improved since he was first diagnosed and they continue to get better. Is this something we want to do? Absolutely not. But you find out that you should never say never because someday your back may be up against the wall. We believe in the Lord with all of our hearts and we believe that he will guide the physicians and give us strength to endure this journey. The outcome is in His hands.

If you take anything from my post, Maureen, don’t put a lot of stock in statistics. One thing you will learn on this forum is no two people have the same experience with treatment or anything else concerning this disease. All the best to you and your husband on your journey with this disease.

Keep asking questions.

Mary

[katydid]

that is an inciteful analysis Mary for which I thank you. When you say you started on this MDS road many years ago…..can you tell us just how many is many? We are trying to get a gauge on time frames here as newbies to the MDS club.

Graeme (husband of katydid)

[Mary4Mike]

Hello Graeme,

If you read under my signature, it gives a brief summary of my husband’s MDS experience. He was diagnosed in 2001, however, when we look back, we are positive he had it for at least 3 years prior to that. He has never been really sick with this except for the terrible nadirs he endured from chemo treatments, namely, Dacogen. The chief complaint has been extreme fatigue and shortness of breath. These were usually helped with a TX, but he no longer gets a big boost from them anymore…..more like a gentle lifting of symptoms. Keep in mind that everyone is different when it comes to progression of disease. There is no "common measure" one can go by, unfortunately. We feel like we are in a Catch 22…..no transplant, chance of leukemia or bone marrow failure……or transplant, that offers another array of problems.

Maureen,

I believe that on another thread you were asking about iron. Mike has done Exjade with success, however, our copay is a whopping $3500 per month so we swithched to deferoxamine done 3 times weekly by IV because our insurance will pick this up entirely. His FE is 2400 right now. So far, because he is TX dependent, it is keeping a handle on it.

Take care, all.
Mary

[MJM]

I apologize for taking so long to post; it seems like there’s just not enough hours in the day to keep up with everything. The statistics I mentioned in my earlier post were from the doctors at the VA Hospital. Joseph’s hematologist told us the success rate would be about 20-25%, and he also said it would be lower if the donor was not a sibling. When that doctor was on vacation a couple months ago, his associate filled in for one of his appointments; I took the opportunity to ask him what he thought about a transplant. He told us that Joseph’s age was a significant negative, and that only one out of ten patients would still be alive after one year. He basically said that transplant was not even an option for him.

At the time we were only a couple months into the Vidaza treatment, so we didn’t pursue the transplant route. Jack and Mary, I appreciate you posting the information you have received on success/mortality rates. Those numbers sound much more promising, and I plan to discuss this information with his doctor. Somewhere in my online wanderings during the past nine months I remember seeing success/mortality rate charts, possibly reflecting age differences. Now I just have to find the link in my unbelievably long list of bookmarked pages about MDS.

Jack, is the MEC protocol given to patients with low percentages of blasts, or is it generally given when the blasts approach or exceed 20%? Joseph has never been what you would call "robust", and this MDS has knocked his strength down to practically nothing; we have serious doubts as to whether he could survive any high-dose chemotherapy. That concern was one of the reasons we haven’t pursued the BMT.

Thanks for the info. on the Exjade, Mary. I asked his doctor about it again this week, and he said that since it can take years for the iron overload to cause harm, he wants to hold off for right now and see what happens with his counts now that we’ve discontinued the Vidaza.

Maureen

[Mary4Mike]

Maureen,

They never considered a high dose chemo pretreatment for Mike because of his age. Also, because he has less than 1% blasts, they are not considering radiation prior to transplant. This could change, but it was the concensus of the transplant team at U of M at the time of reviewing his case. They do a lot of testing just to make sure the patient is physically strong enough to withstand a transplant. That is what Mike is going through right now.

What is Jack’s FE now? ( if you already posted it, I’m sorry that I don’t remember )

Have they offered your husband a mouth wash for the blood sores and blisters? Mike was given one called Ann Arbor mouth wash that was quite a concoction that seemed to help the discomfort. If you need a list of ingredients, I’ll dig out the bottle. I remember that Benadryl was one of the items in it.

Keep in mind that these chemo treatments can also effect his chromosomes. That was something we must have pushed to the back of our minds, but we would have still given each treatment a try.

[MJM]

Hi Mary,

I would definitely like the information on the mouthwash, if you’re able to locate it. The blood blisters do get sore and irritating to him, so he’d like to try it.

I’m not sure what "FE" refers to; if you’re asking about his Ferritin level, it was 3150 at the end of July. (I assume you were talking about Joseph, unless your question was directed to Jack, or "Jaxem", who posted earlier in this thread).

You mentioned earlier that Mike no longer gets the same boost from transfusions; the same thing has happened to Joseph. In the beginning, for about a week following RBC transfusions he felt almost normal, and had almost all of his strength and energy back. Now there are some weeks that he barely notices any improvement at all, and other weeks that he has the "gentle lifting" that you described.

Apparently Joseph’s chromosomes are significantly abnormal, based on the first two BMB’s. We don’t know if the level of abnormalities has changed since February; in the most recent BMB, there was too much fibrosis in the bone marrow which prevented them from determining the current cytogenics. I was really hoping to find that out.

One of the biggest problems he’s been having for many weeks now is fevers. They seem to be related to the platelet transfusions, but it’s difficult to know for sure since he gets the platelets so often. The fevers pop up on an almost daily basis, sometimes twice a day. They range from 99.5 to 101.5, and we treat them with Tylenol and ice-packs. That usually does the trick, although sometimes it takes a couple hours to bring the temp down. His doctor said as long as he isn’t having any other symptoms then it probably isn’t caused by an infection, and the way we’re dealing with it is fine. But the feverish episodes seem to sap his strength, which is already low, and it’s all the more difficult to carry on day-to-day living. Occasionally the fevers seem to be accompanied by a throbbing lower back pain. The Tylenol also helps with that, but at times the pain level is described by Joseph as a 10 out of 10. If we could find a solution to these issues his quality of life would be so much better.

Maureen

[Hunter Bob]

Hi MJM – This is Hunter Bob’s wife. Hunter Bob was in the hospital for a month from an infection at his port site – finally got out July 23. He is terribly weak – they say probably from being in the hospital for a month, but as I read in your post, Bob doesn’t get a boost from his red blood transfusions like he did a couple months ago.

I even asked if they would take another CBC after he got 2 units of blood Friday to see if it had been brought up ‘enough’ to make him feel better. I was told you have to wait 24 hours to get an accurate reading. . . .His Hgb was 7.6 before they gave him 2 units of blood; I would like to see it at 9, but it’s hard to get it there and then keep it there for more than 24 hours.

He also gets transfusions of platelets regularly — all told, he gets blood and platelets about 2x a week and it’s been that way for about 2.5 months.

His Dr. wants to wait at least 2 months before starting chemo again (only had 1 round before getting the infection). We both worry that his strength may not come back to acceptable levels.

Bob is mostly housebound at this time and can’t walk for more than 10-15 steps with his walker before having to sit down. Again, we hope this will improve after awhile.

We’re not sure how long he had the disease before being diagnosed — looking back on his bloodwork from the VA, it seems his counts started falling in Sept., he started getting tested in January and was diagnosed in March. That’s a short span of time to feel the effects of this disease so severely. . . . it affects everyone differently.

Just keep trying anything you and your Dr. feel comfortable with — this is a true test of strength, faith and love. We’re all here with you.

~Karen

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