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[TheBirthofLove]

My mom was diagnosed in August, 2010 with myelodysplasia. She is almost 62. It comes as a result of chemotherapy and radiation that was used to treat her for bartholin gland cancer over the past several years. She had been in remission of the cancer for 3 years when this raised its ugly head. Her bloodwork came up funky and they did a bone marrow aspiration. They found 5% blasts, but she had a lot of deletions and abnormal chromosomes. Since one of the deletions was 5q, the oncologist decided to give revlimid a try. She was also on procrit. Her WBC is critically low, often below 3. Her platelets are 106 or lower. Her hemoglobin is usually around 9-10. She has not needed transfusions yet. A repeat blood marrow was just done a few weeks ago. Her blasts are now 9% and 16 out of 20 of the chromosomes that were karaotyped are abnormal or have deletions. The oncologist has decided to take her off of revlimid. He said that because she is not transfusion-dependent, he does not want to try vidaza or decitibine because the side effects of those drugs will significantly impact her quality of life. He has recommended that she get a consultation at the Moffitt cancer center in Tampa, Florida to discuss clinical trials. We've made the appointment. My mom has nobody in her life, but me. She has two other sons...one who is not particularly involved and the other one has autism, so this is beyond his comprehension. I am trying to support her through this and do what needs to be done. We made the appointment at Moffitt. I've done a lot of googling and from what I've read--due to her age, the fact that her MDS is a result of chemo/radiation, and the sheer amount of chromosmal abnormalities, her prognosis is not good. 6-18 months?! The oncologist is honest, but he has not yet given us a prognosis...I think he wants to keep my mom positive. She has been working full-time as a teacher, but will probably have to stop soon due to the risk of infection and the fact that it's just getting harder for her to work. She has a lot of joint pain and a lot of fatigue. She also has type 2 diabetes and unfortunately, has never really taken good care of herself, so that is a contributing factor. I was wondering if there is anyone on here with similar experiences who can maybe direct us a bit. I don't really even know where to start. I am very overwhelmed and I am having a difficult time with this. I have a 14 month old son who is the light of my life and honestly, he is what has been pulling me through. Ironically, though, the hardest part about my mom being sick is that I fear she won't get to watch her grandson grow up. It breaks my heart. Any words of assistance or encouragement would be greatly appreciated. I feel very alone in this. Lots of love and healing energy to all of you and/or your loved ones.

Melissa

[Neil Cuadra]

Melissa,

I'm sorry to hear about your mom's MDS and the challenges you both face.

It's unfortunate that her MDS is secondary to previous chemo/radiation since that's tougher to treat successfully. It's also too bad that she's not in top health condition for a 62-year-old and that her risk of infection is high. But she also has some factors working in her favor: having your support and involvement, having only one cell line that's critically low, not being transfusion-dependent, and being at the Moffitt Cancer Center. They've got some of the best MDS doctors and access to the latest research.

It makes sense that you haven't gotten a specific prognosis. MDS is a rare disease, and when you add in diabetes and prior treatment for bartholin gland cancer, there's no body of statistics on which to base predictions and little they can say beyond broad generalizations. I'm glad that you and her doctors are considering quality of life. It sounds like her doctors have made sensible choices so far.

I can think of nothing better for improving her quality of life than getting to spend time with you and your son. It may not be realistic to expect your mom to see her grandson go off to college, but she can watch him growing up right now. If it's not too tiring for her just watching an active 1-year-old, I think that getting them together often will light up her life as it does yours.

On the medical side, have her doctors mentioned growth factors? Have they considered whether she's robust enough and relatively young enough for a nonmyeloablative transplant? If they haven't mentioned these choices they presumably aren't considering them, but even then it's worth understanding why. Every treatment choice involves a tradeoff of potential benefits vs. potential risks. Has your mom expressed her opinion about whether to consider aggressive treatments despite the side effects?

Since you want to learn as much as you can, I suggest that you sign up for the One-day Patient Conference in Tampa in October.

[TheBirthofLove]

Originally Posted by Neil Cuadra

On the medical side, have her doctors mentioned growth factors? Have they considered whether she's robust enough and relatively young enough for a nonmyeloablative transplant? If they haven't mentioned these choices they presumably aren't considering them, but even then it's worth understanding why. Every treatment choice involves a tradeoff of potential benefits vs. potential risks. Has your mom expressed her opinion about whether to consider aggressive treatments despite the side effects?

Since you want to learn as much as you can, I suggest that you sign up for the One-day Patient Conference in Tampa in October.

Thank you, Neil for your support and information. It was actually just what I was seeking, but I didn't really know how to ask for it because I wasn't altogether sure what I was looking for. When she had cancer, things were a lot more definitive. In a way it was almost easier. MDS seems a lot more complicated to me and it's harder to explain to others too. The only growth factor she is on is for the RBC...the Procrit. She is also on antibiotics. They have not mentioned transplant as an option, most likely because she doesn't have any siblings. I was reading the information packet that I got from the AA & MDS International Foundation in the mail today (great, concise awesome informative packet) and I see that in a non-related donor match has only about a 20 in 100 chance of succeeding. My guess is because she is higher risk, older and does not have a sibling match, that this may be why they have not yet brought that option to the table. I don't know, but I do plan on asking about that.

I am also wondering just how bad treatment with vidaza or decitabine really is? Will it significantly decrease her quality of life to the point where it doesn't make sense to try those drugs? That is what the doctor seemed to be implying. She has asked me to research side effects on those drugs...I think because she is wondering about the benefits vs. the risks of those treatments. We have a long-standing relationship with this oncologist. He's a good guy...sensitive and honest. He saw us through my grandma's long battle with colon cancer, then my mom's battle with cancer and now this. What I especially like about him is that he will always call ME back and speak to me in an honest way. My mom has never been too good about absorbing this kind of stuff, so it really helps that he values me as part of her "team" and responds directly to me when I have questions about my mother's care.

She absolutely adores her grandson. He is the light in her life. He's had a lot of colds lately, so sadly, she hasn't gotten to spend too much time with him.

Thanks again for all of your responses. I am going to check out the one-day conference in Tampa that you mentioned too.

[Neil Cuadra]

Hang onto that oncologist! The type of partnership you describe is so important.

The chances of success with a transplant are indeed grim but 20% is an older statistic based on full transplants. The success rates of matched unrelated donor mini-transplants in 2011 are likely to be better. If you ask the AA&MDSIF or your mom's doctor about it, it's the current data for nonmyeloablative transplants that's relevant. Of course she'd need to find a matched unrelated donor, but they sometimes find matches on the first try. You never know until you look. The National Marrow Donor Program found a perfectly matched stranger for my wife's transplant; not everybody is that lucky. In any case, as a layperson I'm not doubting the doctor's advice, or promoting one treatment over another, just suggesting that you ask questions that will give you the big picture.

[mausmish]

I suggest you search these forums for the key words Vidaza and Dacogen. Many people use these therapies with minimal side effects, myself included. I had Vidaza injections for a week out of every for for 11 months prior to my bone marrow transplant. My quality of life was definitely improved by the treatments. I've just started Vidaza treatments again post-transplant as part of a study to determine if it might help prevent relapse. Best of luck to both you and your Mom. I'm so sorry she's having to go through this new battle.

[Lindano]

Your Mother's story could be my own, except that I have not started any treatments yet. I was diagnosed in Oct. last year. 3 BMB later Blasts continue to get higher. Mine is from Breast Cancer Treatment 3 years ago, cured the Cancer, left me with this horrible disease, a no-win situation. Dr. says I must start treatment soon but keeps trying for a study, keep getting turned down. I am extremely tired some times and other times can almost fool myself into believing they have made some horrible mistake. I also have not had to have transfusions yet. I worry that the drugs will change all of this and I will have a lower quality of life than what I have right now. A lot of the drug side-affects can cause lower levels and that would mean lower quality of life. It is so hard to decide what to do, information overload most of the time. All I can say is find a Dr. that you are comfortable with, I went to three before I found one I trusted, Good Luck with your Mother, what a wonderful Daughter she has, I would love if my kids would take on some of the information processing but don't know how to ask that of them. My only daughter also has a 9 month old baby that is the love of my life, have to be very careful with him having cold/flu thing a lot, he makes my day to see him. Keep us informed.

[Neil Cuadra]

Originally Posted by Lindano

I would love if my kids would take on some of the information processing but don't know how to ask that of them.

Linda,

I have a suggestion. Get extra copies of Your Guide to Understanding MDS from the Aplastic Anemia & MDS International Foundation. Give one to each of your children. How much they read and when will be up to them, but chances are they'll look it over at some point and absorb some of the information.

[TheBirthofLove]

I am sorry it took me a while to get back on here. For some reason, I did not get notification that I had new responses after Neil's original reply to my thread. I also don't get a chance to type all that much because my son is pretty demanding right now.

Since my last post, I have been scouring clinicaltrials.gov and googling, crying, reading, etc. I've been pretty busy. I also spoke to my mom's oncologist today. I really love that he will speak with me so candidly. So, I managed to get some new information from him. Not new, exactly...just information we hadn't yet covered in consults.

He says my mom is not yet classified as high risk, she is intermediate...probably 1.0-1.5. He wasn't sure without looking at her file and he didn't have that in front of him during our phone call. She has several chromosomal abnormalities and one of them is on 5q, which he said makes her prognosis poorer. The good news, if you want to call it that...is that he does think a clinical trial involving some kind of a transplant could very well be an option for her and that she is likely to find a match. We basically just have to find the right clinical trial for her.

I asked him to elaborate a bit about prolonging the use of Vidaza and Decitibine and because my mom's primary complaint is of fatigue and she is not yet transfusion-dependent, he thinks it may significantly decrease her quality of life with no actual "goal of treatment." From the studies I have read, Vidaza alone seems to increase survival by about 9 months.

I told him I had been reading all kinds of different things regarding RAEB-1 and prognosis and I've seen anything from a prognosis of 4 months to two years. I have no idea where my mom falls on that and though she keeps prodding me to find out what I have found out on google, I don't really want to tell her that. She is such a fighter and a part of me thinks that it will demoralize her. She has already voiced that she does not have the same determination in fighting this that she has had in the past with her cancer. I am hoping I can somehow change that and keep her more positive...give her something to hold on to...because, g-d, I really don't want to lose my mom and I really, really want my son to know her. It is eating me alive to think that he might not...or most likely, he won't remember.

Anyway, moving on and changing subjects...we have an appointment with Dr. Lancet at Moffit in early April. Our oncologist seems to think that even if they cannot offer a trial, they will know of colleagues who can. My oncologist has also offered to comb through the 71 clinical trials I found on the internet and help pinpoint ones my mom might be eligible for and help facilitate the process.

Linda, I feel for you so much. I am on the other end of the spectrum. I am taking a lot of this on my own shoulders because my mom is not good with this kind of thing, generally speaking. Sometimes the less she knows, the better she is able to cope. Maybe that is how your children feel. I don't necessarily agree with it. I think children should be supportive and helpful to their parents, but it may be the only way they know how to deal with it. My younger brother (23 y.o.) is very hands-off when it comes to my mom. He will ask me what's going on, but that's about it. He doesn't want to be involved and he doesn't want my mom to know he is even concerned. People have very unique ways of processing information and dealing with emotional "burdens." I know, that for me, if I chose to not be as involved as possible, I would regret it. My mom literally has no one. No real friends and no family. My mom was hardly "mom of the year," but she is the only one I've got and I don't feel she should have to go through this alone. I like Neil's suggestion to get that information for your kids. I read through the packet and felt it was very helpful in understanding my mom's situation. It also makes me feel that I am able to communicate with her and the doctors about it with more proficiency. You might want to try contacting the volunteer peer support network on AA&MDS International. They have trained volunteers of other MDS patients who will speak with you. They match you up, I think. I suggested it to my mom. I think it would really help her to talk directly to someone who has dealt or is dealing with the same thing. I hope that your children find a way to be more supportive and involved and I am sending love and prayers your way. Thank you for sharing your story with me and letting me know that we are not alone.

Thanks everyone...Melissa

[cathybee1]

Melissa, a lot of us understand your emotions and feeling overloaded and alone. Keep the faith -- the first few months were hell and then I found I was better able to "mellow."

I was also in the same role as you are describing -- my husband really didn't want to know very much about bone marrow diseases the first few months. Everything I read was terrifying, especially those mortality tables. And was carrying that all inside since he didn't want to talk about any of it. Finally, before one of our second opinion doctor's visits, I printed off some information and insisted he read it so he could at least understand what the doctor was going to be saying. Now, I know I have to feed stuff to him a little at a time and let him digest it. Though I'm still the one going after the information, he is a good partner in talking through the options and choices, and then making the decision that works best for him.

I trust that at some point, your mom will come along as well.

There are many choices of treatment. Your trip to Moffitt will be very productive, if you are like we were, the ability to talk to a specialist helped immeasurably for us to set a course that we could follow.