Preparing for transplant admission September 21st

[Debbie W]

Thanks, the positive thoughts have certainly helped. We'll see what the next few days bring, Mike is looking forward to leaving his room.

I'll be watching your space to see how things progress for you.

Best regards,
Debbie

[Debbie W]

Now time for some healing, of course there is a follow up visit on Monday and then the 1 month BMB, but so far all is well.

[mausmish]

That's great news, Debbie! Thanks for your insights and updates. May Mike's healing continue at a fantastic pace.

[Mary4Mike]

Debbie,

I have been following your posts about your husband's journey. It has and will be interesting to continue watching his progress as my husband's transplant Day 1 was October 1, 2009. He had his 1 year biopsy last week and learned that he still has no disease and 100% donor cells. I pray that things go as smoothly for your Mike as it has for mine. I realize that all transplants run on their own timetable of recovery and that your husband went through the real whammy of prechemo preparation.

It will be good for both of you to be able to leave the hospital and get on with the recuperation portion of this journey. Stay strong!

Mary

[Susan L]

Hi- I am amazed at how fast everything has gone for Mike. It is really great how he is doing and I bet you all are so happy leaving the hospital. Enjoy your time and rest now - when all is completely well I am sure you both will be going full speed ahead. Bless you both.

[Debbie W]

The biggest challenge now is eating, so he is still sticking with what works, a limited variety of foods. We might venture out for a walk on this gorgeous day

[Debbie W]

That is wonderful news about his one year biopsy and happy that things have gone smoothly for your Mike! Thanks for the warm wishes and words of encouragement, we are enjoying the new normal for now

[Debbie W]

He is very happy to move around. Yesterday we found the gym in this building and Mike did a mile on the bike and a small amount of rotations on a couple other machines, just starting very slow for now.
Hoping you are feeling OK and that the Vidaza is working!!!

[Susan L]

Originally Posted by Debbie W

He is very happy to move around. Yesterday we found the gym in this building and Mike did a mile on the bike and a small amount of rotations on a couple other machines, just starting very slow for now.
Hoping you are feeling OK and that the Vidaza is working!!!

Hi - I am doing ok - alittle short of breath going on again, and the tiredness. Biggest problem is the mouth sores. I'm sure they will go away again. It really is encouraging to hear about Mike's progress. To be rid of this disease will be a miracle. Best wishes coming your way.

[Debbie W]

Wish all these problems would just disappear for you, but hopefully it will be worth it in the long run.

We are encouraged, but will also remain vigilent about following their rules for the next several months.

Thanks for all the encouraging words, sending you positive thoughts each day

[Susan L]

Originally Posted by Debbie W

Wish all these problems would just disappear for you, but hopefully it will be worth it in the long run.

We are encouraged, but will also remain vigilent about following their rules for the next several months.

Thanks for all the encouraging words, sending you positive thoughts each day

Thank you for always being uplifting. Sometimes we all need it. I got some Magic Mouthwash - but boy oh boy - these sores are bad this time. From the tip of the tongue to the back of the throat. I hope its just running a short time frame. Hope you guys can hold off moving from there till Friday and go to the Hope Lodge. (due to the spraying) Take care

[Debbie W]

In addition to the magic mouthwash and bicarb solution, they also used Gelclair three times a day in the hospital. One nurse told us that the magic mouthwash reduces the pain, but that the Gelclair also helps to heal the sores???

http://en.wikipedia.org/wiki/Gelclair

It was one of the times Mike did not really eat or even drink that much - just ice chips for a day or two, hope they go away soon! We're staying at the condo until we move to Hope Lodge on Friday, we'll miss the two rooms, the location and the gym that Mike has been using.

Be well
Debbie

[Susan L]

Originally Posted by Debbie W

In addition to the magic mouthwash and bicarb solution, they also used Gelclair three times a day in the hospital. One nurse told us that the magic mouthwash reduces the pain, but that the Gelclair also helps to heal the sores???

Thank you for the info - it is getting abit intolerable now - atleast I am being quiet at work (hurts to talk) I will call and ask for the Gelclair - Take care.

[squirrellypoo]

Any updates, Debbie?

[Debbie W]

Originally Posted by squirrellypoo

Any updates, Debbie?

It only takes me 2+ months to get around to an update

We've been home for about 24 hours from our stay at Hope Lodge in NYC, of course they do not have internet access in the Big Apple

Seriously, sorry for being absent, but the days just seemed to pass by so quickly. Hopefully things will return to a new normal soon.

Mike is doing well, day +102, and the doc moved him to every other other week appointments.

Best to all!

[Debbie W]

Hi Bailie, decided to post my reply on this old thread so as not to distract.

No mutations showed leading up to first transplant, blasts had reached the margin of 20%, difference between MDS and AML in 2010. I believe his original blasts were in the 10%, after several Dacogen treatments his blasts increased to 20%.

In 2010 they did a T-cell depleted transplant to avoid GVHD, but the EB virus manifested itself about three and a half months after transplant and he underwent several treatments of Rituximab. After that his IGG levels never really climbed on their own and he needed to be supported by IVIG treatments every few months. A little over three years later his WBC dropped about 3 points (8's to 5's) then another long overdue blood test revealed a WBC in the 2's and peripheral blasts just under 10, they called us back as we were just leaving the hospital to give us the news and did a BMB that day. Results around 30% blasts in the marrow and donor status had changed significantly. Before his second transplant they detected the FLT3 mutation, although he achieved remission again with the 7+3 induction.

When I asked if this mutation was detected the first time they said no, I also asked if there were different "levels" of the mutation and I came away thinking it was a lower level and that tests have become more exact. I did not press the question any further, first I figured that I would not understand the science and second because as caregiver I did not want to add to the stress of my patient

I do feel that if this relapse had been caught earlier they might have been able to a DLI, or maybe not?, but I do believe we need to be our own advocates or advocate for a loved one.

Sorry for the late reply and hope you are doing well! This is a challenging disease, hopefully they will continue to make significant strides in the not too distant future.

[bailie]

Thank you Debbie. This topic has particular interest for me. I believe that I developed "donor cell leukemia" (DCL) when I relapsed at about Day+210. A primary characteristic of DCL is relapsing with completely different mutations etc. than prior to SCT. My relapse (30 percent blasts and Philadelphia chromosome) was short lived. I started immediately with Vidaza and dasatinib and quickly went back in remission. DCL is felt to be grossly under-reported in the literature but now receiving considerably more attention. Many researchers now feel that donors can be carriers or have a genetic disposition of leukemia but not exhibit the disease. It is a hypothesis that it could be the reason why some people unexplainably relapse and others relapse who might seemingly appear more healthy.

You also helped answer one of my questions that I have wondered. That question was/is, "can a person have MDS/AML without having genetic mutations?" Apparently that is possible. Then I have wondered what specifically causes the higher blast count if not for the mutations? All very interesting.

[Debbie W]

although I can see the possibility and just a quick search is that it most likely under diagnosed.

We went to a seminar a couple of weeks by a local cancer institute, one thing they mentioned is that some, possibly many, of us will die with one or more forms of cancer inside us, but our 'incredible immune' system normally keeps things in check and we die of another disease. Going with the DCL that you mentioned, what happens when someone receives a new immune system from someone who has a mutation that the recipient did not have originally and can they fight it off? It is all very interesting, but we certainly wish we not even thinking of these questions! I might try and probe this idea further at our next appointment, but that is not until mid-December and it is a day filled with 6 appointments.

Wonderful that Vidaza worked with 30% blasts, my husband had first tried Dacogen which they said was similar to Vidaza before MDS transformed to AML, so they did not think that was an option.

[DanL]

Bailie,

Great question about having increased blasts without genetic mutations. If I recall correctly, roughly 1/2 of newly diagnosed, non-therapy related MDS patients do not present with chromosome damage. In the past few years, researches have found other genetic mutations or damage that may be the root cause of the evolution from normal to MDS. They call these driver genes, here is a quick passage that lists them:

Driver mutant genes include those of RNA splicing (SF3B1, SRSF2, U2AF1, and ZRSR2), DNA methylation (TET2, DNMT3A, and IDH1/2), chromatin modification (ASXL1 and EZH2), transcription regulation (RUNX1), DNA repair (TP53), signal transduction (CBL, NRAS, and KRAS), and cohesin complex (STAG2).

Most testing for MDS patients doesn't really go this far in diagnosis - it is more of a research nice to know line item, as treatments aren't currently tailored to fixing these mutations yet.

The appearance of blasts and other immature granulocytes in the marrow and blood is frequently an indication of marrow stress - basically think of the factory analogy that GregH was so adept at explaining - if you were to take the factory (your marrow) and force out more production than it was capable of producing reliably, bad product would make its way to the showroom floor (your blood). This is what blasts represent - bad product that is replacing the good product in your marrow and blood. Over time, these bad cells crowd out the good ones, resulting in deteriorated health.

[bailie]

Thank you Dan. I had two of the mutations (KRAS and SF3B1) from your list and had them (along with IKZF1) until transplant. Never saw them again after transplant except for a trace of SF3B1 which was temporary. My doctors were quite concerned about these mutations as well as the blasts.

The "marrow stress" you refer is also of interest for me. What causes "marrow stress"? Does it develop from short telomeres (I think so) during what I term as a "susceptibility crisis". My susceptibility crisis occurred during a lung fungal infection, very high levels of prednisone and diabetes II and was when I relapsed. Vidaza quickly remedied the situation it seems.

I hope you are continuing to do well. Nice to see your comments.