[leideigh]

my dad is a survivor but recently relapsed, i need support

by leideigh on Tue Mar 29, 2011 1:10 am

hello all -

i am new here. i am here partly for myself, but mostly for my dad.

a little about me: i am a 30-year-old female, about to graduate with a doctorate in psychology. i am an only child. i live in LA, 2500 miles from my parents. tonight i prayed for the first time in 4 years. if you want to know more just ask

about my dad: he's a lawyer, a senior partner in his firm in hawaii. he and my mom have been married 40 years. my dad did 2 tours in vietnam, and contracted multiple myeloma from exposure to agent orange there. after being dx'd, he had to wait a couple years for his first stem cell transplant, then had a second pretty much immediately afterwards. he was 5 years in remission, but recently relapsed. he's trying to remain positive, and so is my mom, but it's hard for us all. i have been unable to see him in person since this news. i recently was in contact with his doctor, who informed me that he's now on Lenalidomide and Dexamethasone, for approx 12 months, then maybe another transplant, then maybe another 30 months. it's impossibly difficult to hear that your father has maybe 3 years to live.

we are dealing, but i guess the reason i joined this place is to get support/commiseration/encouragement from others affected by multiple myeloma. i guess i'm just saying that i feel really alone in all this, i feel uninformed and helpless. can anyone relate? words of advice?

anyways i'm very glad to meet you all

[dwalsh]

Re: my dad is a survivor but recently relapsed, i need suppo

by dwalsh on Tue Mar 29, 2011 10:08 am

Hi there, sorry to hear about your dad's relapse. Sounds like he was doing very well, prior - so i would try not to panic just yet... everyone relapses eventually since there is not cure/permanent remission. Firstly, if you could answer some questions, that would be helpful. How old is your dad? And aside from the prior stem cell transplants, what chemo / treatments did he do in the past, to put him into the remission? In other words, what treatments has he already had? Velcade, Thalidimode, Cytoxan, etc. Looks like your dad is going on Revlimid and Dex steriod, which many, many people are on and lot of them have good results with. See how that goes. If it doesn't work right away, don't panic - sometimes a new drug takes a little time to work. (a month or two, etc). There are a LOT of people who have had stem cell transplants and then go on Revlimid for maintenance with success.

As far as time frames, you really don't know - and neither does the doctor. If that's what he meant (are you sure that's what he meant?) - i dont think he should be telling you that. This disease is unpredictabe but more pointedly, everyone is different and and multiple myeloma is very individualized for each person. Various patients respond differently to each type of treatment, no one is the same. Also, they have come SO far with multiple myeloma and "survival rates" are no longer what they once were... that is a good thing! My dad has the multiple myeloma, he is 80, was in terrible shape when he first started but once under treatment, the multiple myeloma stabilized quickly (not remission) and he has been stable for over THREE YEARS with no relapse yet. - and that is with no stem cell transplant. The cancer is 'controlled' and he lives a normal life. I know he will likely relapse this year, but then you just have to try something new and hope it works.

It sounds like your dad has good care, so i wouldn't borrow trouble for tomorrow - take one day at a time. Good luck!

Deb

[leideigh]

Re: my dad is a survivor but recently relapsed, i need suppo

by leideigh on Sun Apr 03, 2011 12:20 am

hi

thanks so much for your reply. as cheesy as it sounds, i'm glad to know i'm not alone.

to answer some of your questions, i had to ask my mom for details. according to her, my dad was on high doses of Tahlidomide and Dexamethasone as well as Acyclovir and Bactrin for 6 months before his chemo, which according to her was oral and called Frontline Therapy. he had his first autologous stem cell transplant in november 2005, then another one in february 2006 (they had advised him to wait 6 weeks). he has been in remission ever since and off all meds until about 1.5 months ago. he has now taken Zometa twice, and takes Revlimid 21 days/month and Dexamethasone once a week. that's all as far as i know. i feel like a blind person in the dark, i have no idea if this is normal or excessive or really mild....? so far the side effects are pretty bad acid indigestion as well as insomnia.

does this help? i need all the input i can get :/ thank you so much for your encouraging words. this seriously sucks, and finding people like you is really helpful for me, i already feel less alone.

[leideigh]

Re: my dad is a survivor but recently relapsed, i need suppo

by leideigh on Sun Apr 03, 2011 12:21 am

also, i forgot to add that now my dad is 67, and has no other health problems

[Dr. Edward Libby]

Re: my dad is a survivor but recently relapsed, i need suppo

by Dr. Edward Libby on Tue Apr 05, 2011 11:59 am

Hello,
It is always hard when a patient relapses. Fortunately there are many options for his retreatment (sometimes referred to as "salvage"). In addition, there are new drugs available and/or on the near horizon that he may be able to take advantage of. The National Comprehensive Cancer Network (NCCN) has a valuable section for patients ( NCCN Guidelines for Patients) on their website. Access to the information is free. Their pamphlet is very detailed and has a table on "Mutliple Myeloma Therapy Agents" that lists nearly all of the agents commonly used in 2011. Reading this information is a great way to become a better informed caregiver and/or patient. You can find the website at nccn.com
Ed Libby

[James]

Re: my dad is a survivor but recently relapsed, i need suppo

by James on Thu Apr 28, 2011 2:16 pm

Very sorry to hear about your Dad's relapse. My Dad recently relapsed in the last month and just started a Velcade/Doxil combo his doctor believes will stem the tide. I live in Los Angeles too and hate being 3000 miles away from him on the east coast. I know how you must feel. It's so terribly difficult being away from our parents when they get sick, especially with multiple myeloma. It's also hard to just go back and visit with job/responsibilities here. Call him frequently (as I'm sure you do), research treatments online and let him know you are always there for him. And of course, try to visit when you can -- which is my goal in May or June. This is a hard time and it's hard to accept our parents won't always be with us... especially when they succumb to cancer. Be strong, hopeful and Skype with him when you can. He knows how much you care and I hope he continues to fight this terrible disease. Know this most of all, you are definitely not alone. - james