lynniepoo

We would like to feature you and your Multiple Myeloma experiences in an article for our blog if you would be interested in doing that. All I would need is to have you type out a description of what you have been through in your treatment from the start. I will take your information and write a piece out of it. A few pictures are wonderful for the article. I'm sure you've seen some of the others we have posted over the years before. Let me know if you have any questions and if you would be interested.

Thanks for being with us and we hope you're doing well.

Hi lynniepoo! Yes, it does look like we have a lot in common. Is that grandchildren in photo with you? They are very cute!

How are you? Been thinking a lot about you:) lynne

Hope you have a great week:)

Hi, what's even scarier is that I went to an Orthopedic for shoulder pain, ? Torn rotator cuff. He told me I would have to have surgery. Being the pro-active person that I am, I told him to give me a cortisone shot and that I would rehab my shoulder myself. I asked him if this could be my multiple Myeloma kicking in, he said, "I'm not really up on that multiple Myeloma". My answer to him was, " you should be as you deal with bones and this disease destroys the marrow and bone, shame on you. Needless to say, I did get my shoulder back with water therapy and bands, and he will never treat me!

Hello Lynniepoo...in response to your question...the pain was everywhere..I had not realized that when I switched to Tylenol I was feeling withdrawal pains in addition to the pain that I normally feel...If I don't take the Dalaudid on time every 5 hours my leg and feet and back start burning... I started taking Gabrepenton on Friday and it has made a tremendous difference in my well being..thank you for your concern.....

Good morning I wanted to thank you for your thoughtful reach out tell me yesterday which was in especially bad day. I try to stay strong through these rounds of bad news but sometimes it's hard for me. People like you and my other friends are those that help me room the hard days I'm very grateful that I have so many friends. I know I have to be vigilant and remain a better friend to those that are my friends and even those that are not. I'm blessed in many waysI just have to keep reminding myself. thank you again and I hope you have a fantastic day! I appreciate your kindness.

My best to you & yours,
vet613

Hi Lynn! You and I have "talked" before so I wanted to post on your page about a recent response you gave. I knew that some people go through many rounds of chemo but I did not know they would do multiple SCT. Not doubting what you say but I can't believe it. My M spike and IGG started coming back up after 90 days. They never once discussed a second SCT. It took me six months to start recovering from SCT. I don't think i could have another SCT that close together and am glad I've had three years before facing another one.

Have you seen any research on multiple SCT? I would really like to read up on that.

Thanks
Charles

Hi Lynniepoo,
I too had my stem cell transplant in 2012, continue on revlimed every other day and zometa every 3 months. I have been well and continue to have great checkups, thank God. Hope the same for you.

Hi and thanks for responding. I had stem cell in June. I have done great, except being very tired all the time. I have had bronchitis for over 2 weeks and haven't been feeling well. Here at the holidays, I am lonely a lot (no spouse, no children) and I am fighting depression. I had read somewhere that people with MM lived only a few years. My doctor only says I am in "remission". I wondered if anyone with MM was more enlightened about prognosis. Thanks, Judy

Hi, I wondered what type of maintenance drug you are on...My doctor prescribed revlimid. It took a while to get it pre-authorized by insurance, and now they tell me it will cost me $479/month after insurance. I don't have $479/month. I have applied for financial help with drug company, but have not heard anything. I too am taking monthly zometa. I had my first IV yesterday.

Hey! Well the MRI official results have not been given to me. But my dr said he DID NOT see anything "blaring" . So he believes the results should be good!!! Hallelujah. Maybe it was just a fluke w my white blood cells cuz they have leveled out:)) but Wednesday evening I noticed blisters on the sides of my mouth, I asked a friend could it be fever blisters? ( I've never had them before) she thought yes. Over the night and by Thursday at noon, my mouth n throat were killing me!!!! Turns out my shingles had come back:( stupidly I stopped my acyclovir in may:(( idk why just thought didn't need it any more!! Bad choice:(( so they doubled the acyclovir (1600 mg) and gave me that horrible rinse we had at hospital during stem cell transplant !!! Ugh. Good news they have cleared up tremendously!!! I slept most of the weekend ha ha. That seems to be my answer to any time I hurt bad or going through a rough treatment ha ha. So I am still stable - no difference in my protocol or treatment!! Also found out I'm going to be a grandma again by my daughter:)))) floating on cloud 9!!!
So happy you had a great weekend w your fam!!!! Chat soon:))
Lynne

Lynne, is their a name for the M spike? I have just signed up for my online chart w the doctors. I can pull up test results. I really am not aware of which test I should be watching and understanding other than my potassium which has always been an issue:( any advice you have to help me be more informed I would appreciate. I'm somewhat embarrassed I don't know more about my condition than I do ha ha. Did you see what happened to Serena at Wimbledon? I'm confused was she ill? Thanks Lynne:)

Hi and thanks for responding to my message on here. My doctor won't let me go to church or get in any crowds yet...I hope next month, he will say it is ok, because I am ready to go. I had my stem cell transplant in hospital on 5-15-14. I was there for 2 weeks. I have done fairly well at home. I still have problems with diahrrea and get dizzy at times, so I use a walker.
I think there may be a Cancer group somewhere in area, but I haven't searched them out yet...but, plan to, as soon as I am off my leash! Thanks for your suggestions!

Unfortunately I went without treatment for so long that I am now in a motorized wheelchair because of the damage that's been done to my back. I have multiple fractures in my spine and because of the lung issues that were created by chemotherapy I cannot have any type of surgery because I can't be intebated. The cancer has also effected my right shoulder severely and is now beginning to affect my left one.

My Dear!!! I just got through reading what you posted to me and I consider it a post to my precious cousin as well...What loving words and compassion you have..I thank you with all my heart for myself and my cousin. You just acquired a new follower,me. I would love to share that my cousin has accomplished another night behind him.Everyday sometime more then once he has especially sent me a text in the morning telling me he has made it through another night. I will keep you in my prayers and bless your children for being wonderful support for you.Your inspiration of being here on this site surely gives me and so many others hope. I have found out that if it weren't for angels like you, there would be no way loved ones.like me would not be able to learn and get some idea of what are loved one is going through.I hope this day can bring smiles to your heart.To know just how active you were ,was what my cousin went through.His job of 10 years he was in so much pain,which made home life activities harder and ended him up in er with emergency surgery on his spine and multiple myeloma..Sending warm thoughts your way and a big hug.Sincerely Cathy(Me2

Hi lynniepoo, ya never do know,ya know, you might be 'cursed' to dance at the wedding of your grandchild, or take a great grand kid to sit.

Best wishes

Hi lynniepoo, We have identical situations (although I am 49). You mentioned that you had surgery for back. Do you feel this was not necessary. I have the same, 5 fractures and arthritis of the spine. At the time of my diagnosis, they did not want to do surgery because I was so ill, and didn't know if it would even help enough to out weigh the surgery. They want me to see a nero-surgeon now. Opinion?

I see that you started following me so I thought I'd say high. Like you, this site has really helped me out. I am curious about your journey. Since you had SCT did you have also have vaccines at one year? If so, how did that go for you? My doctors were not happy with the results of my SCT because my proteins started coming back after only 90 days. I was on 10mg Revlimid from December of 2012 to October of 2013. I was very tired all of the time and had lower intestinal issues. They took me off Revlimid but now determine something happened as a result of the vaccines, not Revlimid. I am now on 15mg of Revlimid but may have to go back to 25mg Revlimid and Dex.

thanks so much for getting back to me.

hi, i am new chemo pt with mm. what treatment did you use?

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