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Respected Contributor
Posts: 2,092
Registered: ‎03-16-2010

Re: Multiple Myeloma

I did know someone in his 60s who developed Multiple Myeloma back around 2003. He ended up at the University of Arkansas because they had a Multiple Myeloma program there at the time. He had a bone marrow transplant and he did well for a little over 10 years, then he succumbed to cancer. Please do your research, maybe you or your loved one (whoever has the disease can get into a drug trial/study). 

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

Re: Multiple Myeloma

Halo, mine started in 2004 when I was 59. I had a stem cell transplant in 2007 then entered a clinical study for Revlimid. I continued on that drug until last October when my myeloma mutated from low risk to high risk. I then started a new chemo drug, daratumumab, which has given me a huge drop in my blood numbers. I have a bone marrow biopsy in a month which I am expecting to show the chemo is doing it's job. The U of AR myeloma program was to provide a cure by throwing every drug available at the disease. It was/is a difficult, risky treatment.  Not sure how close they came to delivering a cure but nothing recently in the news. A new cancer treatment called CAR T may eventually cure all cancer in a 10 year period. Watching that carefully, for others if not for me.

Regular Contributor
Posts: 172
Registered: ‎03-10-2010

Re: Multiple Myeloma

Linda I am so happy to see you post but not to see you are out of remission. I hope you are doing ok and the treatment is working now.. I promise I will check in more often. I have thought of you often and you are in my prayers always still. 

 

Mocha?????? What's up girl? Hope all is well with you and yours. I have lost your email. It is almost pearl party again and I am planning pearls and outfits for next week.

 

Waving at Shosh and 4Kicks 

 

Sending many, many hugs to you all.

 

I am sort of ok. My thyroid went out of whack last fall and in the sppace of 2 months I gained 20 pounds. I was gaining weight on very, very little food. It was very bad for a while. Now that it is being medicated correctly I am stuck being as fat as a pig. Not happy about that. It could be worse or more serious than a weight gain. I now roll down the road rather than walk. On a diet but not one ounce less yet  Smiley Sad

 

My job is going well and I am happy there. I've been able to cut back my hours because of the raise I got so I can now have a life  Smiley Happy

 

Boys are doing well and one even has a job in his field and the other is almost out the door too. I am blessed.

 

Our 19 year old cat died last fall and we held a funneral and wake. All three of us chared stories, laughs, tears and a beer in her honor. She was a great gal and is missed. 

 

Take care ladies and I promise to check back sooner than this time.

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

Re: Multiple Myeloma

Hey newberry! Glad to hear your thyroid is working again. I have been on a med for about 20 years. Seems I just eat and gain. My chemo is now once a month and my oncologist said after my bone marrow biopsy in May that I was in remission. Woo hoo. I have to have the biopsy every 6 months instead of yearly. Have to watch this cancer carefully as it will mutate again. We have lost so many cats over the years and some were the "best cats ever" and just heartbreaking. My son moved back home AGAIN and brought a kitty with him. She is a little devil. So we have three 15 year old cats and a kitty. We know the 3 older cats are getting close to the Rainbow Bridge. Nice to see you here. Hello to our other posters. Glad to be here, glad to be anywhere!

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

Re: Multiple Myeloma

Hi All,

     I love and miss all of you.

Happy Thanksgiving!

Love,

Mocha

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

Re: Multiple Myeloma

Mocha!  How are you? I check in here to see if there are any new posts. I think I posted earlier that November, 2017 my Myeloma mutated to high risk with poor survival results. My Dr took me off Revlimid and I started Daratumumab which is pretty new. It is in the category of immunotherapies. By this May I was in remission. Had a bone marrow biopsy 2 weeks ago showing no cancer in my plasma cells. I have a port and will have one for the rest of my life. There are so many more drugs than when I first diagnosed. I take this treatment once a month. I am so grateful. We had a quiet Thanksgiving. Son and girlfriend stopped over later. Hope you are well and busy in a good way. Hope your holidays are blessed in happiness and good health.

 

Linda.

 

 

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I’d Rather be a Tigger than an Eeyore.
Regular Contributor
Posts: 173
Registered: ‎03-10-2010

Re: Multiple Myeloma

Linda,

     I am so happy for you.  I wish the MMR foundation would do an article on you.

It would give others hope.  Seeing your strength, your never giving up attitude, and your personal knowledge of MM I know would help many people.

     I am healthy but life has become trying for me the last couple of years.

My dog who kept me sane after DH passed died of Lymphoma.  I always told my children my home would be creepy without my sweet 92 pounder and now my home is creepy.  Way too quiet.  Please don't mention it as I am still devastated by the loss of him.

     My youngest daughter is stressing me to the max.  She was attacked trying to help a person that was being attacked. I was on the phone with her, she yelled and hung up.  She and two friends called 911 and followed the psycho until police arrived.  It took 3 officers to subdue the creep. The city has taken out a restraining order to keep the guy away from her.  Restraining orders make me nervous.

     Two months ago she was riding one of those bikes you can rent in our city and was hit by a car. Six foot fence, she didn't see the car and the driver didn't see her.  She has 8 screws, two plates, wires and a piece of bone floating in her ankle.  She has amazed me with her strength to deal with this.  Two months in and she is still in a boot but has started PT.  I keep telling her to stay out of the city because it has become so dangerous.

     Linda keep doing what you are doing because it is working.  You are always in my prayers.

Love,

Mocha 

   

  

 

 

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

Re: Multiple Myeloma

Newberry, Shosh, 4Kicks, Dame and All,   

     Where is everyone?  Hope all is well.

Love and miss all of you,

Mocha

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

Re: Multiple Myeloma

Linda, Shosh, 4Kicks, Newberry, Dame snd All,

Happy Valentine's Day!!!

Would love to hear what all of you have been up to.

I have missed you.

Love,

Mocha

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

Re: Multiple Myeloma

Hey Mocha, I try to check in here to see if there is any new postings. Awful about your daughter and she was trying to help. She must be a strong woman. I had my 27th round of Daratumumab on Monday. Glad I have a permanent port. They also draw my blood during these once a month treatments. I have a .1 Mspike. My dr says this is a remission. When I was diagnosed I was at 70% and when it mutated in 2017 I was at 32%. I am fortunate Revlimid worked so long since this drug has only been around for 3 years. I haven’t had my bones checked is 2 years so I asked my oncologist to schedule a PET scan. Will have it early in March. I can feel the effects of aging (74) and high dose steroids and the immunotherapy I have monthly. I still try to get to pool classes but if I have stuff to do around the house I don’t have the energy I used to. I try not to stay in and just sit around. I am very grateful to be alive. Winter here has been mild. More rain than snow. Son, who is a permanent fixture, took down the wallpaper in a bathroom and the kitchen. What a mess to deal with. At least now we have paint. His kitty is a cat and the 3 old ones just ignore her. We try to visit family in Erie. One brother has leukemia, sister had breast reduction surgery which probably saved her life as they found very early cancer cells, other brother has horrible RA. Hubby doing well. He will be 80 in June. Dame (Bagaholic) struggles since the passing of her husband. Her get up and go has got up and left. I think she has a lot of land with a house and barn. I think about you so often and hope you are doing well. Hugs, Linda