RAEB1 to AML in 8 short months

[Peachy]

Hello All – My husband just completed his 4th round of Vidaza the first week of Dec. Follow up BMB showed his blasts had grown from 5% to 35%, thus diagnosis of AML.
We thought Vidaza was helping as all counts seemed to get better, but that does not turn out to be the case. To further complicate matters he had a lymph node removed that appears to be cancerous. Final diagnosis of that on Monday.

It took me about a week to finally figure out the actual name and subtype of his AML. It is called “pure erythroleukemia” (pEL) which falls into the category of AML M6b. (Who knew there was an M6a and M6b). From what I can tell so far this is one of the rarer types of AML. There does not appear to be a lot of info on pEL.

Our options: BMT, Heavy Chemo, Trials or nothing.

Am hoping you all may be able to help me with a few questions and/or your experiences:

Is induction therapy the name for the Heavy Chemo? We were thinking that since the Vidaza (4 rounds) was ineffective that this may not be a path to take.

Secondly – as trials also include a percentage of folks with a placebo, and this being an aggressive form of AML – that we didn’t want to take the risk.

Thirdly – he is 68, so BMT is still very risky. Doing nothing is not an option for us.

Since he was doing so well we had slowed the research on BMT and now find ourselves in fast mode getting up to speed. Needless to say we are in a state of shock and doing our best to get educated (any suggestions greatly appreciated) and finding a good outfit for the BMT. We live in Colorado and are checking out a place in Denver and also Mayo Clinic in Arizona (we were there earlier this year) to start with. We know that we have to move quickly. Another possibility is Dana Farber in Boston.

Unfortunately he has no living siblings. The good news so far (as we understand it) is that there is no chromosome involvement (final results yet to come). Otherwise he is healthy, up until the swollen lymph node showed up 6 weeks ago.

Any suggestions, comments and/or information and/or where to find it would be helpful. I realize this is an MDS forum – but we can’t be the only folks that made it to AML. If there is another place I should go, please let me know that as well.

You all have been very helpful during my posting time, which has been short at best and mostly about fevers, Vidaza and pneumonia. I met a forum member here in Colorado who has helped me understand the different BMTs. If we are to receive one it will more than likely by the allogenic variety.

Thanks for being here… Peachy

[bailie]

Peachy, I am 67 and just finished my first round of Vidaza. There are many people on this forum who can give you better advice than I can, but I share a similar situation. They are already getting me in position for an eventual transplant. There has been considerable improvement in transplant procedures. My advice from my experience and knowledge (again, no expert here) would be to immediately get the ball rolling toward the transplant. It would be the "mini-transplant that has been shown to have positive outcomes and is now used for ages up to about 73-4 years old. Naturally, the underlying conditions have an effect on outcome.

You said, "Unfortunately he has no living siblings." That should not be a problem if you can get a donor from the national registry.

What advice were you given concerning a transplant?
I wish you the best in your decision.

[katgio50]

Peachy,

First and foremost they will try to get your husband into remission by induction chemo which as you say is the heavy duty kind. During that time, a search for an unrelated donor could begin. His age of 67 is not all that old for a transplant . My husband just had his and he is 74. As we look around at the patients in the hospital and in the waiting room, we see many that would be in their 60's and early 70's. We would recommend going to a facility that specializes in transplants.
If you have any specific questions, I would be glad to help in any way. When I was doing my research, I had a difficult time finding info on older patients so I would like to help anyone else that I can.
Kathy G

[Peachy]

Ballie - We have been told that we should seek the BMT. That of course was before the cancerous lymph node, but do not think it will change. I feel like an idiot for not doing all the research sooner.

Katgio50 - We will be talking to the doctor on Tuesday about the induction chemo. We were under the impression it was that or the BMT, so I must have something crossed. How long ago was your husbands BMT? and how is he doing?
It is wonderful to hear about successes. The facilities we are looking at now are considered "experts" in transplants I believe. We are willing to travel if need be. I know I will have questions later and will post when they come to me again.

Thanks for your replies. Peachy

[DanL]

Peachy,

I am very sorry to hear about the rapid progression to AML for your husband. The good news is that Colorado does have a very good transplant program at Presbyterian/St Luke's Hospital in Denver. They are connected to the Colorado Blood Cancer Institute. I have met several people there in their late 60s who have received transplant for AML and MDS. If you haven't already spoken to them, I would recommend you add them to your list. The doctors I have met have been patient, caring, and professional. I believe that they will help lead you down the right path.

[SLB]

Peachy, I had 8 rounds of vidaza in 2012 in the hope that a better matched donor could be found (3 siblings & none matched and the best on the registry was an 8/10) after I was diagnosed with MDS in Feb. unfortunately, I also quickly progressed to AML. Within days I was admitted to hospital & begun induction chemo (7 days continual Iv). I was initially told 3-4 wks in hospital for induction chemo & then 2 rounds of consolidation chemo, but was in for almost 6 weeks because my bone marrow never re-generated, was out for about a week when another bmb showed I was not in remission. So had another round of induction chemo, which meant another 5-6 weeks in hospital including a stay in ICU. Fortunately, I was then in remission and doctors decided there was no time to wait & I had my transplant on the 6th of march 2013 with an 8/10 match. I was out of hospital in 3 and 1/2 weeks and have managed to stay out since!

It is my understanding that they like you to be in remission going into transplant hence the induction chemo first. I wouldn't say it was easy but nothing compared to the mucositus I had with my transplant (had none really with round one, and a little bit with round two). I realise I am younger than your husband but definitely felt that old by the time I was finished! Feel free to PM me if you have any questions I might be able to help you with.. Unfortunately I am an Aussie so can't help with best hospitals over there. I haven't found any other forums as active as this one but there is one on the leukaemia & lymphoma society website. If I was more technically minded I would be able to link it for you, but unfortunately I am not!! good luck.

[Peachy]

DanL - I see you are in Denver. I found the website for Colorado Blood Cancer Institute have read their info and actually sent it along to my husband's daughter so she can understand better. Thank you for that. I believe this is the outfit in Denver our Doctor is talking to for an appointment. We are thinking this may be a good fit (if they have room for us) as I will be closer to home and friends.

SLB - Thank you so much for sharing - you give me hope along with good information. As we have yet to meet with a team for BMT it is hard to know what to expect. I am the researcher of the house and appreciate your insight into the process. I am happy to hear you are doing well. I will send you a PM.

Thanks to you both.

[sherryjac2]

Peachy,

I am a 62 year-old female and I was diagnosed at 60 without any symptoms…just discovered on a routine physical...AML 6A in Feb. of 2012. I also had a couple chromosonal abnormalities trisomy 21 and a deletion of 20q. I was initially given Vidaza on a trial basis to see if it would reduce the blast level, but after just a few cycles it was clearly not helping. I searched in the forums for others who had AML 6, but we are a rare type and I got no replies. It's also difficult to find information on line except in medical journal forums. Good luck reading those cryptic entries.

Because AML 6 in either form A or B is resistant to treatment and I had no other co-morbidities, and was in good physical shape, I was moved quickly to transplant. Induction chemo (the chemo they give you to put your cancer into remission prior to transplant)…because of my age was the "reduced intensity" version…however I didn't find the 7 days of chemo to deny me any of the side-effects felt by the full blown version. Everyone reacts differently though. The good thing was I did achieve a complete remission with the first cycle. In the meantime, my only sibling, my sister, was tested and found to be a 10/10 donor (talk about luck!). I had my induction chemo beginning May 9th of 2012, had 2 days of additional chemo right before the transplant, and went to transplant on July 3. I am going Jan. 8 for my 18 month check-up and will have another bone marrow biopsy. I had one at 6 months and 12 months and both showed 100% donor cells, which is what you want to see. Hopefully, I'll see that again next week, as the further I get from transplant with no relapse the better my chances are for long term survival.

I live in South Carolina. I went to MUSC (Medical Univ. of SC) and had a top notch transplant team. My doc is the head of the clinic and very experienced. In fact, he even had the experience of being a care-taker, as his wife developed AML 13 years ago! I felt very confident in the team and the hospital. While logistics would seem to be low on the priority list for choosing a hospital, you need to consider that after transplant your husband will be required to stay within a close range of the hospital for at least 100 days. This means staying somewhere (home, hotel, family, or cancer center accommodations at the hospital?) many days after his initial discharge. He will also be required to have a constant care-taker, probably you? So, you too will be away from home a long time unless you have family to support you. Follow-up appointments will be very frequent in the beginning…once again, logistically, the closer you live to the hospital, the better. I could have gone to the Mayo in Jacksonville, FL, but it was much further for us to drive. I am very glad I found the Charleston team.

I don't want to babble on about my experience but am most willing to share any and all information I have about AML 6 or any other questions you may have. I remember how my husband and I got consumed by all of this when I was first diagnosed and for months afterwards it was all we could talk about. 18 months post transplant we rarely talk much day-to-day about it, but since I'm heading for my check-up next week it's looming over both of us. There's no sugar-coating this, it's a sucky cancer! On the positive side, I can tell you that the whole experience did present many positive moments between my husband and me, our family and friends. It will change you forever.

Take care & stay in touch with the forum…lots of people here have tread where you will soon follow.

Sherry

[Peachy]

Thank you Sherry for your wonderful reply. I find strength in success. I am so happy for yours.

My husband and I have talked about being close to home, but you now have given me information about the length of time we will need to be close to treatment center. My husband looked and we are exactly 60.6 miles from the center in Denver. Everything else is at least a day to day and a half away, if not further.

I didn't realize the induction chemo and transplant could be a couple months apart. I feel so uneducated, but am gaining on it.

You are correct - I will be the care-taker and we have read it is 24/7, at least in the beginning. No family here, but we do have friends. Part of his worry is the role I will need to play, as he took care of his late wife. I took care of a mother and brother, so it will not be new to me - I just know it will be challenging at times.

Thank you so much for sharing and if you think of something I need to know, please feel free. I don't even know all the questions to ask at this point, but have started the list.

Thanks you again for sharing your information and wonderful success story!

Deb

[katgio50]

Each hospital and cancer central has their own protocol for transplants and the time post-transplant. We live 80 miles from where my husband had his transplant, but have to rent an apartment close by for the 90 days post-transplant. We understand the rationale for this, but in our case he is only going for blood work and to see the doctor or PA once a week. It does seem like we could be home just as well. Don't know about being 60 miles away or what your situation will be. I guess my point would be to choose your facility for all of the right reasons, not just geographical closeness as you might have to rent lodging anyway.

[Peachy]

Thanks Katgio50. Just trying to get an idea of what to expect and you have helped with that. Geography is only a consideration -finding the best Doctor and team for him is at the top of the list. Only the best for the ones you love!

[KMac]

Dear Peachy,

I am sorry you and your husband have to go through this.

I can speak very highly of the Colorado Blood Cancer Institute at Presbyterian/St. Luke's in Denver. I received my non-transplant treatment for
severe aplastic anemia there, by the same doctors who also administer transplants. They are excellent. I have met multiple BMT patients in their 50s-70s there who are doing very well post-transplant.

If I ever needed a BMT or further treatment, unless I opted for a clinical trial that had to be done elsewhere, I would choose CBCI.

[Peachy]

Thanks KMac - I have been wondering if I could find someone who had experience with that Clinic. We also met with a Doctor through a support group who also speaks very highly of the clinic, as does our Doctor. We are definitely going to give it a good look. Our Doc also assures us he can get us an appt without a lot of notice. Being closer to home would definitely be a plus.

At the moment we are waiting results of PET scan and Brain MRI to find the other cancer that is living in his body. At which point (next week) we will decide which one is more life threatening and treat that one first - which may or may not throw us out of the BMT all together.

Thanks for all comments and care....Peachy

[Peachy]

Decided a quick update would be in order, then I may start a new post as we progress. It was recommended that we treat the "biggest elephant in the room" which was the AML quickly. Thus we had the induction chemo (full strength - 7+3). It was very hard on my husband who ended up in ICU with Afib and then kidney failure. The doctors had me calling friends and family, but thankfully he responded to dialysis and after 36 days in the hospital he is home. New BMB shows 2% blasts and showed a new wrinkle is an inverted chromosome 6, which apparently did not appear until the last 2 BMBs. We are tracking that down now. Next course that is recommended is further chemo at an intermediate dose for 5 days, as he did not tolerate full dose. BMT is off the table until his kidney function is normal and then may still be in question due to the conditioning for same.

I have been off the net for so long now. It was a challenge just keeping up with family during the last couple of months....Peachy

[katgio50]

It sounds as if you have had a lot to deal with in 2014. The good thing is that the induction chemo is over and the blasts are at 2%. My understanding is that additional chemo will not be nearly as intense as the induction. My husband did not have any consolidation chemo as he went straight to transplant . Hopefully, things will improve for both of you as continue down this path.

[Cheryl C]

Hi Peachy - I'm very sorry that things haven't worked out for your husband with the BMT at this stage. It's a big decision and anyone who goes down that path is really courageous, to say the least.

Not sure whether a stem cell transplant is an alternative option but if it is you may be interested to read the following regarding SCTs for older patients.

http://www.sciencedaily.com/releases...0624173242.htm

I do hope your husband is feeling much better soon. It's obvious that you are a wonderful support for him.

[Peachy]

Thank you Katgio 50 and Cheryl for your replies. I've not been paying much attention to the internet as of late. We did get my husband's kidneys under control and went on for consult for BMT. He was turned down for the program due to another cancer, which we can't prove he still has nor can we prove it is gone because no one can find it (originally found in a lymph node biopsy). It is called squamous, which apparently becomes very aggressive during the BMT process. So no BMT in the near future.

Have completed the 1st consolidation chemo. Not going too well. Am starting a new thread as his body does not seem to be making any reds, whites or platelets. Reason given his MDS and MRSA. Scared and frustrated.

Hope this finds you well and happy! Peachy

[bailie]

Peachy,

I am interested in your comment, "It is called squamous, which apparently becomes very aggressive during the BMT process."

Do you have more information? I am getting scheduled for a SCT but I have had squamish cell skin cancer surgery in the past. Is it your understanding that it might disqualify me for a stem cell transplant? Anyone have more information?

[bailie]

I have found the information concerning skin cancer and transplants. Thank you for the "heads-up".

http://www.dermnetnz.org/systemic/transplant.html

[Peachy]

Hi Ballie -

My husband did have squamous cells cut out of his skin twice earlier in 2013. He was already diagnosed with MDS then. In his situation the squamous cell carcenoma was found again in an enlarged lymph node, which was removed and biopsied. the biopsy showed its presence, but not in the lymph system. The results indicated it had originated in some somewhere else in his body. We did PET Scans and CT scans and the "origin" was not found. In his last PET scan there was another lymph node that was barely enlarged and still too small to biopsy, which was the deciding factors for the transplant team, as we understand it. Basically we have to know where it is and get rid of it. Thus our mystery.

Am thinking before you have a SCT your entire medical history will be taken, if it has not been already. Whether squamous on the skin alone is a factor I do not know. If it hasn't come up you will have to decide whether to bring it up or not with your doctors. Sorry I can't help more.

Good luck with your SCT.....Keep me posted...Peachy

[Kathy S]

Just returned from Moffitt Canter Center Tampa,FL. Not a good fay as we just received the results of my husbands last BMB. After 4 cycles of Vidaza he went into full remission, however the next month I noticed that his counts were dropping. He completed 10 cycles of Vidaza (total) his blast have gone from 3% to 15-18%. There are no matches and no siblings. Options given are very questionable. We are looking at a study through Phizer (Hedghog) but his liver enzymes are too high at this time to be allowed into the study. We have to see is they will come down. The other option was for Chemotherapy in the hospital for 30 days. Dave does not like the sounds of it and I will support whatever it is that he chooses. The doctor also mentioned a partial cell transplant using our childrens cells that is being done in Atlanta.
Such difficult decisions with few choices.
Peachy, I hope all is going well for you. This is not an easy journey to be on.
Blessings and prayers to you.

[Neil Cuadra]

Kathy and Dave,

I wish you had better news, better choices, and a way to know which choice is best.

What kind of treatment does the study offer?

[Kathy S]

Neil,
It is daily pill form. all I know is they call it the Hedgehog. This is the second phase of the study. First phase included 35 people/ 10 died during the study and there was no answer to the other 25. Kind of uncomfortable feeling. I am currently looking at research and studies being done at Weill Cornell Medical Center in New York have open studies currently going on.

[Neil Cuadra]

"Hedgehog" refers to Hedgehog pathway inhibitors, a promising area of research.

This may be the trial named Ribavirin and Hedgehog Inhibitor With or Without Azacytidine in AML, based on giving Rebetol (ribavirin) with Erivedge (vismodegib) and/or Vidaza (azacytidine).

I hope it goes well for Dave.