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Regular Contributor
Posts: 238
Registered: ‎01-25-2011

Re: Multiple Myeloma

Mocha, glad to see you. I have been a Weight Watcher since 1980. Waaaay over goal but I too am losing very slowly. Trying to get healthy and my diabetes has been acting up. Old lady like me and I haven't thrown in the towel. Keep up the hard work. Been trying to get some work done around the house but bothers my retorn rotator cuffs. Can't just ignore it like DH can.  

Frequent Contributor
Posts: 137
Registered: ‎03-09-2010

Re: Multiple Myeloma

@dubll2011@Mocha1717@newberry@4Kicks

 

Woman Winkpopping in to stay i am still here! i do read thru the forum every day, don't sign on to post or i never get off, type too slow, say too much!

glad to see some 'recent' check ins and that some things are going well anyhow...

 

linda-

i recall your posts re bone marrow biopsies, and that you love your bmb guy, if  i am right, he is not your oncologist/hematologist, but maybe a tech?

 

the drs here tend to do the bmb in their office.

can you tell me what yours involves, meaning, if you know the 'drugs' you may get to 'sleep'- if there is any particular info that may be helpful to pass along?

  if i recall right, you had some 'bad' bmb experiences, before this guy, and you go outpatient to the hospital for it?

anyhow, that is what i remember, maybe i am wrong!

but appreciate your input, as a veteran...

 

i hope your pt is helping- Heart

Regular Contributor
Posts: 238
Registered: ‎01-25-2011

Re: Multiple Myeloma

Hey Shosh, had my first 3 bmb done in my Dr's office. Pain free. He broke my heart and moved to CA. We keep in touch by email. He recommended PA at our cancer hospital who had trained him. He truly was the Bmb whisperer. I did take diladiud  by IV  the first time I had him because I wasn't really sure how good he was. Magic hands. I continued to take diladiud because I liked the high I got as it flowed through me. No I'm  not an addict but it sure explains a lot as to why people are. He retired 2 years ago and handed me over to a gal he trained. She is very good, but not great. He was 10, she an 8 or maybe 9. I have never had a painful or bad experience.  I remember the oncologist  who did my first few said if done right they shouldn't hurt. My next set of annual tests is in October.

 

Regular Contributor
Posts: 238
Registered: ‎01-25-2011

Re: Multiple Myeloma

[ Edited ]

If anyone checking on posts thought I'd post an update. In July my myeloma was still stable, 10 years post stem cell transplant. In September BAM it all turned around. I always knew MM mutated and the genes became damaged and formed deletions. Well mine did. Four deleted genes that took my disease from good long term prognosis to a poor prognosis. The cancer is in the plasma cells in my bone marrow and went from 10% cancer cells to 32%. I will start an IV drug soon. There is no healing of the genetic deleations. Either treatments will keep me going for a few more years or else the myeloma wins sooner rather than later. For now I am good. Feel OK and am hopeful that my expiration date is way down the road. 

Esteemed Contributor
Posts: 6,853
Registered: ‎05-23-2011

Re: Multiple Myeloma


@dubll2011 wrote:

If anyone checking on posts thought I'd post an update. In July my myeloma was still stable, 10 years post stem cell transplant. In September BAM it all turned around. I always knew MM mutated and the genes became damaged and formed deletions. Well mine did. Four deleted genes that took my disease from good long term prognosis to a poor prognosis. The cancer is in the plasma cells in my bone marrow and went from 10% cancer cells to 32%. I will start an IV drug soon. There is no healing of the genetic deleations. Either treatments will keep me going for a few more years or else the myeloma wins sooner rather than later. For now I am good. Feel OK and am hopeful that my expiration date is way down the road. 


I'm so sorry @dubll2011, I'm praying that your treatment works for you. I've read this thread for years but only posted a couple of times.

Regular Contributor
Posts: 173
Registered: ‎03-10-2010

Re: Multiple Myeloma

Linda,

Thank you for the update. Yes, I have been looking for you.

What is the IV drug you will start soon?  It seems like there are lots of new treatments

for MM. I know this IV drug is going to work because you are such a strong woman-  MM, all of your surgeries, you are my hero.   Always remember I love you. 

Mocha

 

 

Frequent Contributor
Posts: 137
Registered: ‎03-09-2010

Re: Multiple Myeloma

@dubll2011,@Mocha1717,@newberry,@4Kicks

 

Heartoh linda i kept meaning to sign in to thank you for the helpful bmb info.

now i just have to come to say how sorry i am about those ****** mutant cells!

after so many years of 'stability', one might feel pretty secure it could stay that way.

did they speculate on what may have triggered this now?

or maybe they just accept results and treat accordingly.

i see in my emails from the various blood cancers, some recent drug approvals- maybe something newer will be offered.

if you feel confidant that you have a good cancer center/team, that's half the battle, i think.

please do keep us posted.

if possible, getting some outside help for the basic household duties may make home more comfortable, especially for any times you may not feel well.

yes, the menfolk often aren't too useful with that, it can get pretty bad, pretty quickly and then it's just overwhelming. you may want to use your strength for other things, than picking up after them.

 

Heartoh mocha dear, glad you are here, but what are you up to????

 

i am up to nothing - but trying to wrap up any medical appointments/etc before fall sick season gets going in earnest. don't want to catch anything, i'd rather stay home by choice, than because i got sick. last christmas, from my 2 family visits, i got norovirus and flu- so rethinking that for this year...

tho nights are chilly, just too warm here in nj.

i forget where you live? linda is in pa, newberry in ca, 4kicks in az- i think! Smiley Embarassed

 

 

Trusted Contributor
Posts: 1,637
Registered: ‎03-09-2010

Re: Multiple Myeloma

[ Edited ]

@dubll2011  (and any poster suffering from this disease)

I will be praying for you. My sister has multiple myeloma and has been in remission for three years after a stem cell transplant. She lost all her hair that was thin and straight and now has the most beautiful full hair with curls. My sister was on a drug called Revlimid after this but stopped taking it as she had the runs and it was wearing her down. She always kept her regular check ups also.

Now all of a sudden in September some of her blood levels started to change. She had to start chemo again to try and bring them down. She called me yesterday and said the doctor saw a slight improvement in her blood work. She has been back on chemo shots for one month and has her shots in her abdomen every Monday. I hope for you and my sister the treatments will get you healthy again and keep you in remission.

My sister was diagnosed with 100% of multiple myeloma when they found it. She said the kind she has should not be hereditary but a few years ago I had to see an oncologist for a M spike in my blood work and check my protein in my urine. After a month of testing the bloodwork didn't show on my last test and they said it must have been a false positive reading. 

I had never heard of this disease before and have learned much about this. The doctor told my sister that her diagnosis of 100% multiple myeloma was the easiest to treat. She was in the hospital for quite a while and then at home for three months before going in public and then with a mask. 

Please post here as so many of us care about the health of others. Learning about diseases that are not that common helps us understand what others face in life. We all have to take our health seriously and if something is wrong please go see your doctor. Then share your story as it may help someone else. God Bless you and I prayer that that remission is in the close future for you again. 

Regular Contributor
Posts: 238
Registered: ‎01-25-2011

Re: Multiple Myeloma

So great to see so many replies. Janemarple, I have seen you on other threads. Here is what I know: I will be taking Darzalex IV.. It is a newer drug and an immunotherapy. My deleted genes will never go away. That''s why I am now at high risk for survival. I was low risk for 10th years and the Revlimid worked successfully for 8 years. My disease mutated and  Revlimid no longer works. I begin my plan to live on Thursday. No one I knew had ever heard of it. The survival rate was about 2 or 3 years. I am at 13 1/2. Will keep you posted. Feel relieved the are people still checking the thread. Thanks Mocha for opening this year's ago. I choose life. Linda

Highlighted
Regular Contributor
Posts: 173
Registered: ‎03-10-2010

Re: Multiple Myeloma

Linda,

You have always amazed me with your strength and I know you will continue to 

do so with your attitude about life.  You are a strong, strong, strong lady my friend.  Will treatments be every Thursday?

Are you still in touch with Dame?  If so please tell her Hi from me.

I think about her often and wonder how she is doing. 

Love you.

Mocha