Hi
My name is Tina, I am 53 yrs old and on May 7th will be 1 yr annv for multiple myeloma diagnosis. It started with backpain.... Being a nurse for 20+ yrs... I thought it was job related... but when the pain then began in my groin to the point I shuffled instead of walking..... time to go to Dr.... I was given motrin/flexaril.... Vicodin/flexaril..... after 3 Drs and ER visit numerous Xrays.... told I had arthritis of the spine.... Getting worse by the day... My neighbor suggested a Chiropractor... Immediately when I shuffled in..she asked" What kind of walk is that?" and ordered a MRI L hip... hyperplasia...was what she saw..referred me to MD for stat lab work.. received a call at home that "the cancer and blood specialist of LI" is expecting me in the AM... A bone biopsy and 3 days later multiple myeloma diagnosis... Velcade, Decadron 2x a week 5 cycles... and Zometa 1x a month with Revlimid last 2 cycles.. Pain was so bad I was on Duragesic patch 50mg and Percocet 1 tab every 4 hrs as needed .I was referred to Mt Sinai in NYC...for Stem Cell transplant.. They harvested from me 6 hrs..... only one day... 10/10 and 11/10 I was in the hospital... Central line placed and given melphan.... 12/03/10 stem cell transplant.... on isolation 12/10.......thru 12/18..... home 12/20..... regretting that I did it ...sick as a dog...throwing up, running to the bathroom with watery stools, couldn't eat and didn't for 4 weeks+ only tea with 5 sugars..... 12/27 first f/u appointment...... couldn't hardly walk...my feet felt like they were in cement..... slept 20 hrs a day..... told my Dr that I regretted having this done... She told me in 1 month I will feel differently... She was Right! I returned back to work 3/11 full time floor nurse... NO PAIN... No patch...no percocet no tylenol since 12/10! 3/15/11 I was told I was in complete remission, no more restrictions...... and no more traveling to NYC every 2 weeks! Revlamis 21 days off 7 maintainance, bloodwork 1 a month a nd Zometa... and my hair....from waist length( I cut it 11/10 donated to locks for love ) bald 1/10.......to growing back thick!
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Re: Almost a year
Hi Lucky T,
Your story sounds so much like my boyfriends. He was diagnosised on April 13th,2011. Severe lower back pain that came and hasn't left. Now his right side chest and shoulder area
is hurting really bad. He is scheduled to take chemo through the end of June (5 treatments so far, Velcade,Dex, Revlimis and Zometa). Then they are hoping that he can have the SCT in July. It's been a terrible couple of months but we cling to the hope of a new start on life, hopefully by September! I've heard so many different stories. It's tough not knowing what to expect with this dreadful disease. If he could just get his pain level under control, he said he would feel better. He shuffles like you were talking about and gets stiff if he sits long. He has problems getting up and down out of bed and off of chairs.
I'm glad to hear that your feeling so much better. Thanks for posting your story.
Karen
Your story sounds so much like my boyfriends. He was diagnosised on April 13th,2011. Severe lower back pain that came and hasn't left. Now his right side chest and shoulder area
is hurting really bad. He is scheduled to take chemo through the end of June (5 treatments so far, Velcade,Dex, Revlimis and Zometa). Then they are hoping that he can have the SCT in July. It's been a terrible couple of months but we cling to the hope of a new start on life, hopefully by September! I've heard so many different stories. It's tough not knowing what to expect with this dreadful disease. If he could just get his pain level under control, he said he would feel better. He shuffles like you were talking about and gets stiff if he sits long. He has problems getting up and down out of bed and off of chairs.
I'm glad to hear that your feeling so much better. Thanks for posting your story.
Karen
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ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Almost a year
Hi Karen,
Multiple myeloma sucks and the stem cell transplant sucked the first 6 weeks, but if he is a candidate for it, I would definately suggest doing it. I have been pain free almost 6 months (6/3/11). I am able to sleep in my bed, something that I hadn't done for almost a year, I can walk with a normal gait, and I can stand tall. Once you know what you are fighting, it makes the battle somewhat easier.
Tina
Multiple myeloma sucks and the stem cell transplant sucked the first 6 weeks, but if he is a candidate for it, I would definately suggest doing it. I have been pain free almost 6 months (6/3/11). I am able to sleep in my bed, something that I hadn't done for almost a year, I can walk with a normal gait, and I can stand tall. Once you know what you are fighting, it makes the battle somewhat easier.
Tina
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Lucky T - Name: Tina
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 5/7/10
- Age at diagnosis: 53
Re: Almost a year
Tina,
Thanks for your response. It's so great to hear that your now pain free. He had another chemo treatment yesterday, and he says his pain is finally easing off now. He only took 1/2 the pain meds. yesterday because the pain wasn't there. Other thatn being tired, he said he feel good. He also had a really good week last week. Maybe the chemo is taking hold now. We saw the nurse practioner yesterday and she said that his protein was down from 4.4 in April to 3.1 now. We were happy abouit that. At least things are looking a little brighter. 2 weeks ago I wasn't sure about anything. It's been tough seeing him go through this. He like you, slept on the couch for a couple of week in a reclining position because of the pain. Now he is back in the bed with pillows tucked all aound him. I know that there's a light at the end of this tunnel.
We're just taking it day by day for now and rejoicing for every little bit of progress! I will keep in touch. It helps to talk to someone who's been through this.
Peace,
Karen
Thanks for your response. It's so great to hear that your now pain free. He had another chemo treatment yesterday, and he says his pain is finally easing off now. He only took 1/2 the pain meds. yesterday because the pain wasn't there. Other thatn being tired, he said he feel good. He also had a really good week last week. Maybe the chemo is taking hold now. We saw the nurse practioner yesterday and she said that his protein was down from 4.4 in April to 3.1 now. We were happy abouit that. At least things are looking a little brighter. 2 weeks ago I wasn't sure about anything. It's been tough seeing him go through this. He like you, slept on the couch for a couple of week in a reclining position because of the pain. Now he is back in the bed with pillows tucked all aound him. I know that there's a light at the end of this tunnel.
We're just taking it day by day for now and rejoicing for every little bit of progress! I will keep in touch. It helps to talk to someone who's been through this.
Peace,
Karen
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ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Almost a year
Karen-
That's wonderful news that your BF is beginning to have some pain relief. I developed a pathologic fracture in my arm 2 years ago and couldn't believe the amount of pain I was in. None of the pain meds made a difference. At the time my orthopedist said that once I started treatment for the cancer that the pain would begin to resolve. It took a month for the insurance company to finally approve the Revlimid. Within a week of starting it I began to feel better. I was driving again by the end of that first month.
I still get pain at the fracture site on a periodic basis, but nothing like when it first happened. I can tell when it is time for my next Zometa infusion by how my arm feels.
I had an ASCT in 1/10 and went back to work 10 weeks later. It isn't a fun process, but it also isn't horrible. I have been drug free except for the Zometa since then.
I hope things begin to get easier for both you and your BF as his treatment brings things back to a more normal level.
Nancy
That's wonderful news that your BF is beginning to have some pain relief. I developed a pathologic fracture in my arm 2 years ago and couldn't believe the amount of pain I was in. None of the pain meds made a difference. At the time my orthopedist said that once I started treatment for the cancer that the pain would begin to resolve. It took a month for the insurance company to finally approve the Revlimid. Within a week of starting it I began to feel better. I was driving again by the end of that first month.
I still get pain at the fracture site on a periodic basis, but nothing like when it first happened. I can tell when it is time for my next Zometa infusion by how my arm feels.
I had an ASCT in 1/10 and went back to work 10 weeks later. It isn't a fun process, but it also isn't horrible. I have been drug free except for the Zometa since then.
I hope things begin to get easier for both you and your BF as his treatment brings things back to a more normal level.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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