Hi everyone, I can't say its a pleasure to join this forum. I'm 54 year old male and recently diagnosed with multiple myeloma. I've never had a medical issue in my entire life. I rarely went to the doctor until this year. Seems like some kind of dream. They call you to tell you that you have a incurable cancer and you kind of go off the deep end. Then you come to the reality that most cancer is not curable. You live with it like many other diseases and hope you live long enough to see a cure.
My initial symptoms started in April when I noticed a decrease in my ability to run and jump during my normal volleyball workouts. I thought it was nothing but sore muscles. Then in May I had a staph infection run through my body which required extensive antibiotic treatment (3 months). Doc was treating my back and leg issues as bulging discs as my MRI indicated some disc issues. I continued to struggle to do any running and by early Aug I was barely able to walk. Doc decided to do MRI of my pelvis and found it poc marked with tumors. A blood test later confirmed multiple myeloma.
I was sent to oncologist who specializes in multiple myeloma treatments had blood work, urine sample and a marrow biopsy (damn that thing hurt) performed. Get results this Friday.
I was looking on the forum for a list of terms that are often used when dealing with this cancer. Can someone point me to a dictionary of terms? Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Newly diagnosed.
Hi Jerry,
Sorry to hear of your diagnosis. Unfortunately, your story sounds all too familiar. Most people who I've met with myeloma really had no inkling that they were getting involved with something so serious until the diagnosis came in.
I find this glossary helpful from time to time:
https://myelomabeacon.org/resources/glossary/
Mostly, though, I just read and, over time, I find myself understanding more and more. There's definitely a learning curve.
Sorry to hear of your diagnosis. Unfortunately, your story sounds all too familiar. Most people who I've met with myeloma really had no inkling that they were getting involved with something so serious until the diagnosis came in.
I find this glossary helpful from time to time:
https://myelomabeacon.org/resources/glossary/
Mostly, though, I just read and, over time, I find myself understanding more and more. There's definitely a learning curve.
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Chuck
Re: Newly diagnosed.
I figured I better update this thread so those of you can learn something like I did when I first visited this site.
After my initial diagnosis I started on Rev, Dex and Velcade. After one week my bone lesions became so intense that I was unable to walk. They placed me in the hospital for two weeks while they gave me daily radiation treatments to take care of the lesions. Those two weeks were tough, daily radiation and chemo pretty much wiped me out.
I regained most of my ability to walk but was taking some serious pain meds for several more weeks. After three rounds of chemo my light chains had come down from 300 to 20. My m-spike was at .4 and I was feeling pretty good. Doc decided to give me another round of chemo and then suggested I do stem cell transplant.
On January 21st I did a SCT in Denver. Two weeks of a near death experience followed by two weeks of steady improvement. Worst long term side effect was the fatigue and the loss of my taste buds. By end of Feb. I was back at work full time.
Last week (end of April) I had my 90 day followup with yet another bone marrow biopsy. The marrow came back clean compared to over 80% when initially diagnosed. My blood still showed a light chain of 21 and a m-spike of .4. So nothing really changed from my initial chemo therapy.
Doc now has me on maintenance Rev at 10mg daily for a year. We'll see how that goes. But, if you are out there reading I can tell you that in August I was sure I was going to die and felt like I didn't care given the pain I was in. Now I'm back to normal, life goes on. Jerry.
After my initial diagnosis I started on Rev, Dex and Velcade. After one week my bone lesions became so intense that I was unable to walk. They placed me in the hospital for two weeks while they gave me daily radiation treatments to take care of the lesions. Those two weeks were tough, daily radiation and chemo pretty much wiped me out.
I regained most of my ability to walk but was taking some serious pain meds for several more weeks. After three rounds of chemo my light chains had come down from 300 to 20. My m-spike was at .4 and I was feeling pretty good. Doc decided to give me another round of chemo and then suggested I do stem cell transplant.
On January 21st I did a SCT in Denver. Two weeks of a near death experience followed by two weeks of steady improvement. Worst long term side effect was the fatigue and the loss of my taste buds. By end of Feb. I was back at work full time.
Last week (end of April) I had my 90 day followup with yet another bone marrow biopsy. The marrow came back clean compared to over 80% when initially diagnosed. My blood still showed a light chain of 21 and a m-spike of .4. So nothing really changed from my initial chemo therapy.
Doc now has me on maintenance Rev at 10mg daily for a year. We'll see how that goes. But, if you are out there reading I can tell you that in August I was sure I was going to die and felt like I didn't care given the pain I was in. Now I'm back to normal, life goes on. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Newly diagnosed.
All of the very best wishes to you Jerry, Thank you so much for updating your situation and sharing the great news !
Best,
Dana
Best,
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Newly diagnosed.
It looks like you're okay now. Do you consider any alternative treatment? The reason I asked is that I had IgD multiple myeloma. And after stem cell transplant the IgD level is dropped but already fasster catching up. I cannot take Revimid because I had a very severe allegy reaction. I found that by using a kind of mushroom could suppress the IgD level. I already each the mushroom everyday for 6 month and it is very cheap. My IgD level is dropping eachtime tests since I took it. I do not know much about the medical stuff but I personally felt I am on the right track. My doctor agreed to off all the medication since my IgD level is improving. This is my choice. I really wish you luck with Revlimid.
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kuantinglin - Name: K.T.
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 09/2011
- Age at diagnosis: 59
Re: Newly diagnosed.
Cool! If you know what mushrooms you are taking please share! I am finding what I eat impacting my multiple myeloma.
Re: Newly diagnosed.
dee777 wrote:
> Cool! If you know what mushrooms you are taking please share! I am finding
> what I eat impacting my multiple myeloma.
I am taking white enoki mushroom 100g daily, chopped and cooked with other vegs, boiled less than 3 minutes. you need seasons for taste, I use salt and black peper. Be aware of use fresh ones, I don't use the one from China who knows what'll come with. And don't take during chemo or maintenance drug. I used Revlimid(5mg) before without any reaction. But during I took this mushroom with Revlimid restarted, I have severe allegy. If you allegy to the mushroom, you may not take. There are also some deseases if you have don't take it. Autoimmune disease like Systemic Lupus Erythematosus (SLE)，Rheumatoid arthritis....
After taking about 2 weeks I can feel the difference..
In any big asian food store, you can find it. If you tell me what city you live, I can help you find it.
My IgD level from 1470 to 1310 to 1160 and to 967 mg/L every 8 weeks since I started my own therapy. the normal range is < 179mg/L. The last one is tested May 8, 2013.
the mushroom comes with root, be sure cut out the root part.
Disclaimer
Here I just give out my part of the story and I don't suggest it will work for you.
> Cool! If you know what mushrooms you are taking please share! I am finding
> what I eat impacting my multiple myeloma.
I am taking white enoki mushroom 100g daily, chopped and cooked with other vegs, boiled less than 3 minutes. you need seasons for taste, I use salt and black peper. Be aware of use fresh ones, I don't use the one from China who knows what'll come with. And don't take during chemo or maintenance drug. I used Revlimid(5mg) before without any reaction. But during I took this mushroom with Revlimid restarted, I have severe allegy. If you allegy to the mushroom, you may not take. There are also some deseases if you have don't take it. Autoimmune disease like Systemic Lupus Erythematosus (SLE)，Rheumatoid arthritis....
After taking about 2 weeks I can feel the difference..
In any big asian food store, you can find it. If you tell me what city you live, I can help you find it.
My IgD level from 1470 to 1310 to 1160 and to 967 mg/L every 8 weeks since I started my own therapy. the normal range is < 179mg/L. The last one is tested May 8, 2013.
the mushroom comes with root, be sure cut out the root part.
Disclaimer
Here I just give out my part of the story and I don't suggest it will work for you.
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kuantinglin - Name: K.T.
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 09/2011
- Age at diagnosis: 59
Re: Newly diagnosed.
Five month post transplant update. My mspike is now .3 and light chains are down to 14. At least things are heading in the right direction. Continue to take the 10mg of Revlimid. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Newly diagnosed.
Man, Jerry....I feel ya. I was diagnosed in January 2009. From Sep - Dec 2008, my doctor was treating my sympthoms as psyatica nerve problems, when finally in December I told her, I didn't think it was that. At this point I couldn't even pick up my left left....I was dragging it. I was scheduled for a MRI then a bone marrow biopsy...I was floored. Like you, I've always been healthy. So far I've had two tumors (knock on wood), radiation, a round of chemo and a stem cell transplant October 2011. I am currenlty in remission and my numbers look good. I still get tired easier (could be age) and my immune system could be better, but I read what some people are going through there and I consider myself very lucky. Hang in there Jerry! It's hard at first. We are all here for you.
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MM208 - Name: Sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2009
- Age at diagnosis: 56
Re: Newly diagnosed.
Six months since the transplant and my numbers continue to improve. Light chains are now down to 7 with m-spike at .3. Maintenance Revlimid is keeping me a little fatigued. Plus, Twinkies are back, what more could a guy ask for. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
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