Alyse Booth's Personal Profile

[alyse]

Hi everyone. I've had aplastic anemia since 2008. I was treated with ATG in November 2008 and my counts were near normal almost immediately. When I had a relapse in 2010 I participated in an NIH trial for Campath (alemtuzumab) and I documented it day by day. You can read the details of my experience on my Personal Profile Page.

Even though every patient's experience is different, I hope that my profile will help patients who are considering a clinical trial by showing them what the experience is like from a patient's point of view.

In this thread I'm continuing the story by writing about my experiences after the trial. Read my profile first, then read this thread. This is also the place for comments or questions about my profile and my ongoing experiences. Please tell me what you think!

January 3, 2011: This is the first week since my relapse last May that I do not have blood work. A happy, healthy New Year to all.

January 17: The roller coaster ride continues. Yesterday my red was 8.6; neutrophils 1280 and WBC 2.1. Those are big drops from Dec. 28th. My platelets were steady at 36,000. I am thankful I don’t need a transfusion -- it has been eight weeks since my last red blood transfusion -- which is beginning to feel normal. Is that a dangerous feeling? Am I deluding myself that the Campath is working? Are my counts going up or down? Do they frequently fluctuate after Campath? Is not knowing what is happening the nature of this beast?

January 24: Yesterday I went back to NY Presbyterian Hospital to see Dr. Roboz and get my blood work done. Good news! My red was up a bit and so were my neutrophils. My platelets seem to have plateaued around 35,000. (Quite a contrast to the 147,000 platelet count less than two months after ATG.) In deference to Dr. Scheinberg, Dr. Roboz said she is "very encouraged." (You have to read my profile to get this.) Hopefully, I will learn more when I go to NIH on February 1. I will report back then. Meanwhile I hope everyone who reads this is moving forward in dealing with this disease and towards long term remission.

[Greg H]

Hey Alyse!

I really enjoyed reading through your profile. Like Lisa Z, I had Campath at NIH, but for MDS. My experience was much like yours.

Good luck on your return visit on Tuesday. I'll be heading up to Bethesda for my three-month check-up the following week.

I hope the therapy continues to work for you and you are blessed with continued good counts and no transfusions.

Take care!

Greg

[alyse]

Hi Greg,
I heard you were at NIH soon after I left.

How are you doing now? I so hope you are doing well.

Thanks for being an inspiration to all of us.

Best,
Alyse

[Greg H]

Hey Alyse!

I am doing great, thanks for asking.

I haven't, technically, responded to the Campath therapy, though my counts, aside from hgb, are better than when I started. The crew at NIH expresses optimism that I will in fact respond, and I share their optimism. I have learned from folks on marrowforums that the marrow can take a while to heal after Immunosuppression.

I hope you are doing well!

Take care,

Greg

[alyse]

Hi:

It is exactly one year since my participation in the NIH Campath trial for relapsed and refractory Severe Aplastic Anemia patients. (If you haven't read my day to day blog describing the experience, you may want to do so.) I returned to NIH on August 9. My HGB was 11; platelets 76; neutrophils 1300. Dr. Phillip Scheinberg, the principal investigator, was very encouraged by my progress. He told me to stop worrying about relapse and to let him do the worrying. He said there isn't anything I can't do.

Over the past three years, I have been blessed with incredible doctors, and the love and support from my family and friends. I am one of the lucky ones and I will never forget this. I am available to support others who are dealing with bone marrow failure diseases.

A few days before my NIH visit, I was in Chicago for my 50th high school reunion. It seemed like the right time to rediscover an important part of my past. I believe that my experience with Aplastic Anemia made me appreciate the reunion even more. It was thrilling to be present there and have the good fortune of rekindling early friendships at this stage of my life.

Alyse

--

[Lisa Z]

Alyse, so glad- to hear you are doing so well. As it turns out, I just picked up some lab results because I was nervous as my HGB had dropped a little over my past 2 labs. But I am happy to say, I've hit an all time high today.
HGB - 11.1
WBC - 2.6 (fine for me since Campath.... always in that neighborhood)
RBC - 3.11 (fine for me since Campath.... always in that neighborhood)
PLT - 151 - been back in normal range for about 6 mo. now....

I have to have my local dr. interpret some other tests that he ran: Leukemina/Lymphoma Evaluation Panel, as it is all Greek to me. But, I am happy right now

All is good. We have a few days at a lake in the Poconos coming up and my tennis team is going on to Districts. So lots of good stuff still to come.

I too, would be happy to talk with any newcomers to the world of Bone Marrow Failure. Knowledge is power!

[alyse]

Hi,

As I have stated many times, I was diagnosed with severe Aplastic Anemia in October 2008. I was treated soon after with ATG Horse at NY Presbyterian Hospital. I was fortunate because my counts went up almost immediately following treatment and never needed a transfusion. The bad news was I relapsed after I was taken off Cyclosporine in May 2010. Since I had serious adverse reactions to ATG, I was fortunate to be accepted in a clinical trial of the drug Campath at NIH. This trial is for refractory and relapsed A.A. patients.

It has been almost a year since I posted anything on this thread. My two year anniversary of the Campath trial is August 9, 2012. I have been transfusion independent for about 18 months. My counts have been consistently good: platelets 100; wbc 2.4; rbc 12.1. I know that I am one of the lucky ones and I am thankful for all of the love and support I have received over the past four years.

I want to encourage anyone who has relapsed following ATG treatment to consider this trial. The principal investigator is Dr. Phillip Scheinberg. You can find the information you need at the NIH website.

This week's announcement by Robin Roberts, co-anchor of Good Morning America, that she has been diagnosed with MDS (following chemotherapy and radiation treatment for breast cancer about five years before), brought back many of the emotions I felt when I first learned about my diagnosis. Finding out you have an illness you have never heard of has to be one of the most frightening things about bone marrow failure diseases. Fortunately Robin will receive a bone marrow transplant, a potential a cure (her sister is a perfect match). However, I doubt that she has any idea how difficult the road is that she is facing. Her courage in announcing this publicly has helped raise awareness and educate the public of bone marrow failure diseases -- something that is rarely seen in the media. My prayers are with her as she begins this journey. May she have the courage to continue to share the experience with the public and have a full recovery.

All best,
Alyse

[Lisa Z]

Alyse, great that you continue to do well! While you were on the AA side, my success story is for MDS. This June marks 3 years that I have been transfusion independent. All the result of my participation in the Campath trial at the NIH.
We are truly blessed!

[alyse]

Hi everyone,

As soon as I think I am done with this disease, it kicks me in the butt again, only worse. In Nov. 2008, shortly after going through ATG at NY Presbyterian Hospital for Severe Aplastic Anemia, my counts came back up and I didn't need any transfusions. Fourteen months later I thought I was cured. My doctor was pleased with my response and took me off Cyclosporine. Within a month, my platelets went from 140,000 to 12,000. After my relapse, I went to NIH to participate in the Campath Trial. Five months later my blood counts rebounded and I stopped needing transfusions. On Sept 17, 2013, I went to NIH for my three year evaluation feeling confident that I had finally beaten this disease. Dr. Young and the other doctors were impressed with how good and stable my blood counts were (plats, 90,000, wbc, 2.1 and Hgb 12.8). They told me not to worry about the bone marrow biopsy results. So I left confident that I was home free. I was living the life I had before the disease, getting labs once every three months and taking only Valtrex. A week later I got a call from a Fellow working with Dr. Young who said that the doctor wanted to speak to me. I knew immediately it was bad news. The BMB had come back showing 18% blasts; the diagnosis was MDS, borderline AML. After speaking with Dr. Young, Dr. Gail Roboz who had treated me with ATG when I was first diagnosed with AA in 2008, called me and mentioned a clinical trial with a drug called Vidaza plus Pracinostat. She also suggested I go for a cure..a bone marrow transplant.

Last week with my blood counts still stable, I started the clinical trial at New York Presbyterian Hospital. It is Vidaza (7 days by injection) plus Pracinostat (2 pills 3x's a week for 3 weeks). The goal is to get into remission so I can have a bone marrow transplant at Memorial Sloan Kettering Cancer Center. I am already on the registry there. I assumed I was much too old (I am 69) for a transplant but doctors at both institutions say age is not a deciding factor anymore. I am healthy in every way except for MDS/AML.

Today was day 6 of Vidaza. I have experienced nausea, fatigue and bad headaches from Zofran, some pain and itching at the site of injections, but was able to have a pleasant weekend off from the drug. Today I had labs and my whites had dropped to 1.2 (neuts are 600); Hgb 11.8 and platelets dropped to 30,000. Dr. Roboz said this is natural and I may need a platelet transfusion. She is putting me on anti-biotics and anti-fungal drugs.

Somehow the drop in blood counts is a reality check for what I am now up against. With Aplastic Anemia, the goal was to get blood counts up. I understood that. But this is different. This is about blasts and it is overwhelming. This has shaken me so much that I really can't absorb it. Has my life changed so dramatically that it will never be the same? Will I ever be able to plan a trip as we were planning to go to South Africa for my 70th birthday? Will I be spending a minimum of two days every month at the hospital and 7 days each month when I get Vidaza or some other more intensive chemo if Vidaza doesn't do the trick? What is my true life expectancy? Is a bone marrow transplant the best option despite all the horror stories I read about? I also hear stories of miracles; I have spoken to bone marrow transplant survivors who are doing well and thriving (In fact, the woman who lives across the hall from me in Manhattan and is my age, had one a year ago and is doing well). But I realize that some still have serious health issues that may never go away.

I have gotten many emails from friends and family saying that I am amazing and courageous. At first, these emails strenthened my resolve. Now I am not so sure. The truth is I am depressed and scared. I thought I had what it took to fight this disease but now I lack the confidence I had a few weeks ago.

Any words of wisdom and hope; any examples of living well with this disease, any comments at all would be greatly appreciated. My thoughts and prayers are with all of you who have or have a loved one with this disease.

Thank you.
Alyse

[Whizbang]

alyse,

There are many 'older' BMT / SCT candidates I saw at Memorial Sloan Kettering...

Work your hardest to get there, they are miracle workers, I was just released on Saturday, and things are really looking up...

To be fair, I am 45 and had a perfect sibling match...

But many, many are successful, at every age, and or diagnosis...

Best to you and God Bless...

[Neil Cuadra]

Alyse,

When you've won a previous battle, as you have, and thought that was the end of it, this kind of setback can be a huge disappointment and sap your fighting spirit. Being told that your counts are great and then only days later that you have borderline AML would be devastating news to anyone. But you don't have any choice but to get back in the trenches with the doctors. The trial sounds promising, and Dr. Roboz is one of the best of the best, so you're doing the right thing.

I've noticed the pattern that so many of us follow. Diagnosis and re-diagnosis are always followed by a flurry of activity: tests, deciding on the treatment, starting the treatment, the appearance of side effects you have to deal with, and often a drop in blood counts (it gets worse before it gets better). Then things level out. Treatment becomes a routine, and then the long recovery process starts. That's when you have a better view of the big picture, that you haven't beaten the disease yet but you're dealing with it and carrying on the rest of your life as normally as you can. You've been through this at least twice now, Alyse, and if you end up getting a transplant it'll be the same pattern yet again. You asked if you'll be spending a lot of your time at the hospital. Yes for now, less and less later.

People can argue about whether or not we are brave when we have no choice but to fight a disease. You haven't given up and that's what bravery is about. You've shown how resilient you are and you've been honest about your positive and negative emotions. I hope that reaching out to others brings you support and strength in return.

Will you be able to go on your planned trip? I expect that you will. You might have to postpone it depending on when your birthday is and how the treatments go, but it'll be the same trip whenever you take it. When my wife was being treated, we knew that a major trip we had planned for years was in jeopardy, and at times we thought that dream was gone entirely, but things look different after your condition has stabilized and you know what you can and can't do.

The transplant option used to be much more daunting for those over 60, and having a sibling donor used to be a huge advantage over a donor from the bone marrow registry, but those factors have become less and less important. Deciding whether or not to go to transplant can be a tough decision, but in your case I think it will become apparent what's best, depending on how the Vidaza+Pracinostat treatment works and whether a donor is identified.

I'm sorry you are back in this position, fighting for your health again, but I know you're headed in the right direction. Please count my wife and me as members of your support team.

[sbk007]

Alyse, All this news is overwhelming. If the shots bother you they can switch to IV. The Zofran can be taken in pill form. The first round is rough but it gets better and when you respond you'll feel like yourself again.

[marmab]

Alyse, I too am very sorry to hear your latest news, and hope for the best for you. In particular, your question about whether or not transplant is the right option really resonates with me, as I have been struggling with the same issue for well over a year. A donor is being sought for me right now -- I finally did give the doctors the go-ahead -- but I am still very conflicted. Unfortunately my story is complicated (as are all MDS and AA cases!), and too lengthy to go into here, so I'm wondering if you would mind if I PM you. In short, I am completely healthy too (except for my poorly functioning bone marrow) so I struggle mightily with the question of whether to continue supportive care (PLT tx, Neupogen) or go for transplant. Are you are willing to discuss this with me further? Thanks so much.

[Cheryl C]

Whether to transplant or not is a huge decision. When I was going through that decision making time a couple of years ago I really appreciated that my specialist was completely frank with me, telling me straight up front that around 30% would have a successful transplant, around 30% would not survive either the process or the GVH, and around 30% would survive the transplant but would not go into remission. I don't know whether these statistics have changed. In any case I would ask your specialist to really be upfront and honest with you about the current level of risk so that you make a fully informed decision.

I'm sure there are many on this forum who will understand what you are going through and along with me wish you wisdom and courage to make the right decision for you.

[alyse]

HI,
Thanks for everyone's comments and good wishes. I would like to hear your words of wisdom as my situation progresses. I finished my 2nd cycle of Vidaza and Procinostat a few weeks ago. We were hoping my counts would go up but they are still low and I needed red and platelets this weekend. I also spent four days in the hospital last week with an infection and got IV antibiotics. My white counts are close to zero. This week I feel great..no chemo and lots of red blood cells from transfusion giving me energy.

I will have a BMB on Thursday, the first since I started Vidaza in November. With my counts still low, I am concerned that the Vidaza hasn't put me in remission. Dr. Roboz said that if I don't show signs of remission after two cycles of Vidaza, she may want to put me in the hospital for a month (I can barely write this..it seems so scary to me) and give me the heavy duty chemo 7-3. I expected to have more cycles of Vidaza; I didn't realize that we should expect remission in two cycles. My guess is that she is concerned because my last BMB showed 24% blasts. Should the blasts increase, I will have full blown AML and be at greater risk.

I am curious about how long other patients have been on Vidaza without success before the doctor decided to try something else. Also what treatment were you given post Vidaza?

Has anyone been through the 7-3 chemo. Was it as horrendous as it sounds? Did it get you into remission? I have decided to go for a transplant. I don't really see any alternative. But first I must be in remission.

Thanks so much for your thoughts and support.
Alyse

[bailie]

Alyse,

I wish you the best. I just finished my second round of Vidaza and have a BMB scheduled for two weeks. I will be looking at a similar situation as you. The decision is to have the transplant now while feeling healthy or continue with Vidaza and risk developing into a worse situation. One way or another, the transplant is in the picture. Ideally, the blasts need to get below 12 percent before transplant.

[alyse]

Hi,
Did your doctor say how long they will keep you on Vidaza in order to get you in remission? What were your blasts when you started?

I know it's a difficult decision to make. I think once I am in remission I will go for the transplant...I am concerned about getting into remission..so once I am there..I don't want to face the prospect of going backwards and then trying to get into remission again. Also they must find a matched unrelated donor and that can take some time.

Did they say what they will do if Vidaza doesn't work?
Where are you being treated?

Good luck and best to you,
Alyse

[bailie]

Alyse,

Originally the doctors were talking about four cycles on Vidaza to give time to see a response. I will have another conversation about this when we get the results of my next BMB. I think they might be leaning toward going sooner to transplant if I am still feeling well. They started working on getting an unrelated donor almost immediately and found four good matches. They didn't put numbers on the matches, but seemed satisfied. All of this will become more clear with the biopsy results.

If the Vidaza doesn't work, I'm sure I will be going straight to transplant ... no other option. My numbers have remain stable during the first two cycles. So it will probably come down to the blast percentage.

I am still feeling normal, which is strange.

I am being treated at the Oregon Health Science University in Portland, OR.

[Marrowforums]

Alyse Booth passed away today (November 28, 2015) after a long struggle following her bone marrow transplant. She lived for eight years after her original aplastic anemia diagnosis in 2008.

Her husband Steve told us that she was an incredible woman who lived a full and exciting life. We know first-hand of Alyse's generosity and strong spirit from her willingness to share her medical story here at Marrowforums and for the support she provided to other patients even as she and her husband struggled through the ups and downs of her own illness, treatment, and transplant.

We will miss Alyse, and we extend our sympathies to Steve and to the other loved ones she left behind.

[bailie]

I am sorry. Alyse made such a great effort. I really appreciated how well she expressed her situation and her thoughts during difficult times. We went through our transplants at about the same time. She helped all of us in similar situations. I was really hoping for good news from her.

[Cheryl C]

My deepest sympathy to Alyse's family too. What a courageous lady she was.