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

Re: Multiple Myeloma

Hi MKR,

     I had never heard of MM before my DH was diagnosed.  Now I hear MM all the time.  An article about the baseball player that got 3 home runs in a game a couple weeks ago said his father had MM.

      What were your sister's symptoms before she was diagnosed?  My husband had horrible pain in his spine.  What chemo is she receiving?  DH was on Velcade.   What did you mean by 100% MM?  Her bloodwork?   How old is your sister?  DH was 72 when diagnosed.  I know too many questions but DH's Dr. loved me for them.  HA! HA!.

I will pray for your sister.

Mocha

      

 

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

Re: Multiple Myeloma

Hi Shosh,

     What do you think Kicks and Newberry are up to?  I think Kicks is trying to get her busy DH under control.  He just never stops doing even when injured.  I think Newberry is super healthy after her scare, continues to lose weight and HAS A BOYFRIEND. 

Am I right Newberry?  Any ideas Shosh?

     Hi to JaneMaple and Tends

Love,

Mocha

 

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

Re: Multiple Myeloma

[ Edited ]

My sister started with aching all over her body.She thought she had the flu and it went away a week later. Shortly after that she got so she got weaker and weaker and she couldn’t even walk. My sister is 64 and was 61 when diagnosed. She is a very active person, eats right, and was an avid exerciser. All the right things we should do. Her blood work showed the disease had taken over every part of her body. That explained the weakness. She also developed bone pain. The doctor said that the 100% through her blood in her body was easier to treat because they would treat all her body and not just different parts. She was on quite a bit of different medications a long time before she was able to have them draw for her stem cell transplant. I offered to be her donor but they now can take your own to do it. She had enough for two stem cell transplants drawn. So far she still hasn’t had to use the second one. She was in a Trial Study and the new meds they used for that. She said she had nothing to lose.

She lives in Richmond,Virginia and I am in upstate New York so I was unable to spend the time I wanted with her throughout all of this plus she was in hospital quarantine for a long time. Her husband and her drove to NY to tell me about her cancer as we are very close and she didn’t want me to hear it over the phone.

She is a very positive person as my mother had cancer also but not MM. They gave my mother six months to live and she lived 8 years. It is very important to have a good attitude to fight diseases we all have.

I had never heard of MM before this. My sister has to have bone marrow tests every 3 months for the dr’s to keep an eye on things. She also has blood work once a month. Right now it is once a week for blood work for as they are checking her levels. I m not sure what chemo she is taking now. I know her M spike and urine protein was off when first found.

She has bone loss in her bones and still has some pain at times from this. Her blood work levels they wanted down is going down since she started the chemo again. I will ask what she is on and post back later on for you.

I will pray for your DH and tell him keep his spirits up as it really does help. Smiley Happy

 

 

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

Re: Multiple Myeloma

@Mocha1717 The medications my sister started on were Revlimid, Velcade, Doxil, and Cyloxan. My sister got her doctor's notes and records and sent them to me so if I ever needed them myself that I had them. Her maintenance drug was Revlimid until she had the runs so bad and had to stop it.

The notes said bone pain, anemia, renal failure and infection was the original symptoms when she was first diagnosed. Her MM was not treatable with standard treatments and that is why she did the trial treatment. It worked to get her into remission for three years.

She is doing very good back on chemo. We are close and my baby sister so we keep in constant contact several times a week. Her and her husband are back on their Harley trips again. Smiley Happy

I hope this answers the questions on her original meds you asked about. Every patient has different options so what works for one and does not work for another. She was glad to do the trial treatment as she had nothing to lose but getting better. She told me there are so many new treatments over the last three years even since she was diagnosed. She had a kidney specialist and her MM specialist that were awesome. Luckily my sister lives within 15 minutes from a cancer center so the trips back and forth was less stress for her.

 

Esteemed Contributor
Posts: 6,864
Registered: ‎05-23-2011

Re: Multiple Myeloma

@Mocha1717 and @MKR NY can either of you explain MGUS levels to me? 

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

Re: Multiple Myeloma

@JaneMarple Go to WIKIPEDIA and put in MGUS and it will do a good explaination of it. I am not familiar with this so I will also read this. Hope this helps. Smiley Happy

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

Re: Multiple Myeloma

  1. Mocha I start next Friday, Nov. 3rd. Have to laugh how things happen. I told the nurse that I couldn't get the port next week since I will be having a colonoscopy. She  asked the name of the doctor who will be doing the procedure and when I told her she laughed because he is able to insert ports. So I get a 2-fer. Will save me another trip to hospial. 
Trusted Contributor
Posts: 1,637
Registered: ‎03-09-2010

Re: Multiple Myeloma

@dubll2011 So glad you get to do this. Hope all goes well and

you get better soon.

Super Contributor
Posts: 375
Registered: ‎03-17-2010

Re: Multiple Myeloma

(((Linda)))

Please accept my apologies for being AWOL here and my thoughts and prayers will be with you. What a battle you have been and are fighting!!!!! You are a WARRIOR!!!!

I thought of you when hearing about the hurrican going through Turks & Caicos (am I spelling it right?? You are the only person I know who vacationed there, and what good times you had!!!! I so enjoyed the pictures!!!!

 

Mocha!!! Please also accept my apologies for my absence from your thread!!!! Yes, I have been super super busy taking care of both my Mom and DH. He is in remission for his hairy cell leukemia but has been diagnosed with Parkinson's and also has severe acid reflux causing an extreme change in his voice. I also think part of that is due to his Parkinson's but who knows? He has become quite argumentative, so I just pretty much go along with whatever he wants, within reason of course.

 

Hello to all the other LOVELY LADIES here!!!! I will try VERY VERY hard to come here more often!!!! My Mom is going to be coming here to stay with us for a while in a few weeks and I am not sure how long, so that will be somewhat lifechanging.

 

BIG BIG hugs to all!!!

In Sunny AZ
Regular Contributor
Posts: 238
Registered: ‎01-25-2011

Re: Multiple Myeloma

Kicks, I am really sorry about all the other things your DH is fighting. There is a man in my cancer support who has had hairy cell for about 12 years and is doing well. I get my 2-fer procedures on Thursday then the infusion on Friday. The nurse said the first one will be up to 8 hours. I plan to take stuff to do. This was so much easier with a pill. The diarrhea was awful and the neuropathy too. I have to finish my last bottle up. They told me I'd have the port the rest of my life. The one I had for my stem cell transplant had 3 tubes hanging outside. This one will be under my skin and I can use the pool. I am in contact with Dame/bagahlic. She has been emailing me lots of support. Her psoriatic arthritis has been rough plus losing her brother, both parents and her DH so close together has brought her to her knees. I'll keep you posted as I step into the next phase of my life. I'd post a picture of Tiger here but my android tablet only posts the URL.  Hugs everyone.