1. < Blood Cancers & Disorders

multiple myeloma

Posted by hylandlams @hylandlams, Nov 27, 2011

i am a 54 year old woman diagnosed in August 2011 with Multiple Myeloma. I have completed 3 rounds of chemotherapy of Revlimid/Dexamethosone.. I will most likely complete 2-3 more rounds of chemo and then proceed with a stem cell harvest/transplant come spring of 2012 at Mayo. I am asking if anyone can give me advice on how to prepare my body, my strength, my mind, or any advice at all to help better my total outcome.

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ISurvivealone | @isurvivealone | Dec 1, 2011

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

REPLY
10 replies
hylandlams | @hylandlams | Dec 2, 2011
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Hello and thankyou. I am going to add you to my prayers tonite. U sound like a wonderfully positive man, who has been through alot. I love your attitude, and how you view your journey. I too hope to have a positive experience, and have chosen the same attitude about only handling what I can today and will deal with the future when it comes. Meanwhile I am taking good care of myself now in order to be stronger and healthier(funny), for when that day comes when I enter into Harvest/ transplant mode. I hope you respond well to the revlimid/dex therapy. I also think if you have great confidence in your Dr. Team that is a must. I am also,learning meditation, and energy healing from a qigong practitioner. Believe me, this journey has opened a part of me that I never new existed.

By the way, on your first rounds of the rev/ dex therapy, how many cycles did you have before u harvested and how long did it take to go into transplant from your harvest, if you don’t mind my asking?

Also, I am new to this type of communication format technology, so I hope this isn’t to personal. Please only answer me if this is comfortable for you. I don’t know how to only contact you and not the entire forum. I understand if I don’t hear back from you..

Bless Inge and prayers
Hylandlams

REPLY
hylandlams | @hylandlams | Dec 2, 2011
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Hello and thankyou. I am going to add you to my prayers tonite. U sound like a wonderfully positive man, who has been through alot. I love your attitude, and how you view your journey. I too hope to have a positive experience, and have chosen the same attitude about only handling what I can today and will deal with the future when it comes. Meanwhile I am taking good care of myself now in order to be stronger and healthier(funny), for when that day comes when I enter into Harvest/ transplant mode. I hope you respond well to the revlimid/dex therapy. I also think if you have great confidence in your Dr. Team that is a must. I am also,learning meditation, and energy healing from a qigong practitioner. Believe me, this journey has opened a part of me that I never new existed.

By the way, on your first rounds of the rev/ dex therapy, how many cycles did you have before u harvested and how long did it take to go into transplant from your harvest, if you don’t mind my asking?

Also, I am new to this type of communication format technology, so I hope this isn’t to personal. Please only answer me if this is comfortable for you. I don’t know how to only contact you and not the entire forum. I understand if I don’t hear back from you..

Bless Inge and prayers
Hylandlams

REPLY
ISurvivealone | @isurvivealone | Dec 2, 2011
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Hi; I believe I had at least 7 rounds of Revlimid, and I can’t even remember what it’s side effects were. I just remember sleeping a lot. Your attitude sounds great and I think that will be as good as the treatments you will go thru. Where I differ from you, is I have never taken care of myself. I have been blessed with a metabolism that has let me live on food that would cause many to develop heart problems. I have had 3 donuts day for the last 30 years. Eat fatty food and all the other junk that make dietitians cringe. I did exercise and was physically active until ’05 when the symptoms of the MM showed up. Since that year I have suffered from severe anemia due to the MM. Other conditions also come into play. I’ve had multiple sclerosis since the 70’s. But the old ticker has never been a problem. If you would like to communicate in a less than public way, you can email me at ithinkalone@me.com. I’m not a private person and will not have a problem sharing any experience that you would be interested in knowing more about. My name is David. I look forward to hearing from you and maybe sharing our experiences thru the upcoming months.

REPLY
Frazer 1 | @frazer1 | Apr 11, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Hi David,
I read you blog comment — wow- just how do you stay sooo positive ???? Am open to all of your advice.
For me, (65) all this started back in ’09, with high levels of protein I had my 2nd bone marrow biopsy last week and am awaiting results. Looks like it’s the start of Smoldering Myeloma. I found lately, I continue to search other Cancer sites, hoping to understand this disease. Unfortunately, that leads to over load of the mind, with increased depression.
As for pain…. there’s sooo much of it. My spine over the last 10yrs. has showed severe degenerative changes, am fused @ C3toC7, and L3 to S1, with dextrorotatory scloiosis. So when Dr.Moore ask me if there is new bone pain, I say yes, but how to tell if it is MM or Osteoporosis, which now is at the fracture level of my left hip, forearm and @ T12 & L2… Wondering how the “TECH” can distinguish between Lytic lesions and osteoporsis.
David, I understand I will need to keep up on good nutrition, I’m losing weight down to 107lbs, use to be 5’3 am now 5′, any advise or tips will be greatly appreciated.
Wishing You a Sunny Day,
Donna

REPLY
ISurvivealone | @isurvivealone | Apr 11, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Donna; I would love to tell you all I know. A lady that I had been communicating with has just finished, her stem cell transplant. I’m sorry I won’t say anymore about her to keep her privacy. She’s still recovering so I won’t even ask her if she wants to share. But I am a different person. I want to tell you something about myself first so you can have more information to decide if you want my advice.
I’m 63 this June 12th. I am married to Kathy Raebel, who will be 63 on June 25th. My wife’s healthy and she has been a willing participant in my care. My health history is as follows. 1975 I found out I had MS. It was not severe and I stayed working until 2001. In 2001 I retired because of the MS causing my work to negatively affected. In 2005 I started experiencing a great deal of bone pain. For three years my Dr, an internist, said I was many things except any type of cancer. I eventually switched Doctors. After lab tests, within 2 weeks of my new doctor sent me to a hematologist. A bone marrow aspiration was done that day, I was told the results that day and I was admitted to the hospital that same day. It all happened so fast I didn’t have a chance to call my wife until I was in my hospital room. After all that, it’s been a journey.
Now, for how we communicate we can choose to do in different ways. I don’t like using this current sight because it is too public. Please contact me in 1 of three ways. Phone 1 262 308-5193. Email dwraebel@tds.net or Facebook. David Raebel. If you do facebook just MSG me. If you call, do so anytime. I live in SE Wisconsin. I will wait for your reply. David

REPLY
ISurvivealone | @isurvivealone | Apr 12, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

I hope you got my other reply. I find this forum confusing sometimes. If you want to hear from me call email or text. 262 308-5193 or dwraebel@tds.net

REPLY
Frazer 1 | @frazer1 | Apr 12, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Oh Thank You David for responding so quickly. My next appt. is on the 16th April, I’ll contact you for answers re: medications, chemo…sideaffects etc. if that’s OK with you.
Have a Sunny Day,
Donna

REPLY
ISurvivealone | @isurvivealone | Apr 12, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

What ever help I can give you I’ll share with you.

REPLY
ISurvivealone | @isurvivealone | Apr 19, 2012
In reply to @isurvivealone "I'm a 62 yr old male that was diagnosed in Feb of '08. My symptoms started..." + (show)
@isurvivealone

I’m a 62 yr old male that was diagnosed in Feb of ’08. My symptoms started in early ’05. I was also put on Revlimid for the rest of ’08. I then went to San Antonio VA Hosp for my stem cell transplant. I heard and read many things of this treatment and what an assault it is to your body. I read and heard of all the side effects of the mass amount of chemo you will be given. My attitude has always been don’t worry about what you can’t control. I don’t know if it was because my positive attitude or the prayers of so many friends but I had minimal side effects. I went thru this treatment with 5 others of various ages. All other patients suffered thru at least 1 of the expected side effects. Could be ulcers that start where food enters your body thru your esophagus to your stomach to your intestines and colon all the way to where your waste is discharged, causing pain at both ends. Pain meds should make this tolerable. Diarrhea, nuff said. Vomiting. And possible organ failure. I just listed all the worst possible negatives, but I’m sure you have either been told that or read about it. If not, you should go into this knowing all possible things that you might experience. The harvest is a piece of cake. On day of transplant when the you receive the chemo is anti-climatic. It took about 5 days before I noticed things were changing. The next 9 days were the worst for me. For about 2 days you will be at your lowest, not pain or discomfort for me but a feeling of such isolation. The nurses said I smiled every day except for those 2 or 3 days. Then you start coming back to life. The more you are able to avoid the negative effects the faster you will be back on your feet and hopefully a long remission. My MM came back and was confirmed 2 weeks ago, and I am now waiting to start Revlimid again. If I become well enough to do another transplant, I have no reservations in doing so. My advice is to try not to worry about something that may not happen. Stay positive and live long.

Jump to this post

Donna; how did your Dr visit go? Please don’t answer using this Forum. I am off FB at this time so please either call me at 262 308-5193 or email me at dwraebel@tds.net. Let me know how i can help.

REPLY
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