AC,
This is an old story with people. It goes on all of the time. So many people, for instance, know they have type 2 diabetes or are prone to it, and they still eat too much sugar, don't watch their weight or blood pressure, don't exercise or watch their salt intake. Similarly with people who have high cholesterol. Then when they have a heart attack, they are in disbelief.
I understand your point, however, you can't MAKE people do what they are supposed to do. And I still contend that even when you have the best intentions (such as I did), I was simply not able to eat or walk as much as I would have liked. Believe me, I tried, and it wasn't my fault. Myeloma is no one's fault, and it can be a very difficult disease and unpredictable both within the disease itself, and the associated treatments.
My dad died of multiple myeloma in 1969. He was 50. He lived for 3 years. Of course, there were only very primitive treatments so long ago – radiation, steroids and blood transfusions. There were some people that said very ridiculous things, like "maybe he didn't want to live," and the like. He was in the prime of his life, happy and just about the most gregarious person you would ever want to meet. I guess it's a way of dealing with awful things that deflect the serendipitous nature of life onto the individual's control. That way, people can say, you see, it was his "fault." He didn't do or feel the right things.
Just a sore point, with me, I guess. I hope you continue along the great trajectory you are currently on. FYI, thus far, since my transplant in October, 2014, I am in sCR, So, despite my relatively longer recovery, we did achieve very good results. I would say I am about 80-90% of what I was before myeloma. I'll take it. BTW, are you going to do any maintenance? Rock on, AC!
Forums
Re: AC's stem cell transplant in South Florida
Since I'm doing induction therapy, I've obviously been talking about stem cell transplantation with my docs and reading about it. The (impossible) goal, of course, is to determine whether to do one or not based on how I would fare.
What sticks with me most is my local oncologist's comment that she had 4 patients who did transplants at major teaching hospitals. Three of them had a very difficult time (don't know the details), and one breezed right through it. The lone breezer, she said, was older, grossly overweight, sedentary, not in great health, and the one she was most concerned about having the transplant at all.
My takeaway was that although some factors might increase our odds for a relatively easy / successful process, on an individual basis it remains a crapshoot.
So very glad you fell on the right side of this, AC, and sorry you weren't as fortunate, Ellen.
What sticks with me most is my local oncologist's comment that she had 4 patients who did transplants at major teaching hospitals. Three of them had a very difficult time (don't know the details), and one breezed right through it. The lone breezer, she said, was older, grossly overweight, sedentary, not in great health, and the one she was most concerned about having the transplant at all.
My takeaway was that although some factors might increase our odds for a relatively easy / successful process, on an individual basis it remains a crapshoot.
So very glad you fell on the right side of this, AC, and sorry you weren't as fortunate, Ellen.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: AC's stem cell transplant in South Florida
Moonscape,
That's exactly my point. It is a crapshoot. Just like the entire "myeloma experience."
However, I am still glad I did the transplant. I think there is compelling evidence to suggest that an upfront auto yields a better level of response for longer. I know there are docs, researchers, and patients who would disagree with me.
There is no question that it is a challenging procedure, for some, more than others. Even though my experience was uncomfortable, I also did not have any major life threatening consequences from the transplant itself. It was more that I had unpleasant side effects. To be fair, I was prone to nausea issues before I developed myeloma, so this was my weak point. And, it's hard not to feel fatigued and out of it when you are continuously nauseous.
If you do decide to go forward with the transplant, go to a major center that performs them regularly. Also, it helps if you like your transplant doctor. I didn't particularly like mine, and I knew it from the start, and should have listened to my gut on that. But she was highly recommended by my oncologist. Truth be told, I hardly saw her in the hospital. She ended up in the hospital as a patient herself! But, she was a real cold fish with a bad bedside manner, and in general not a very encouraging presence. It definitely helps to have a supportive doctor when you are going through transplant.
Good luck, and let us know what you decide.
That's exactly my point. It is a crapshoot. Just like the entire "myeloma experience."
However, I am still glad I did the transplant. I think there is compelling evidence to suggest that an upfront auto yields a better level of response for longer. I know there are docs, researchers, and patients who would disagree with me.
There is no question that it is a challenging procedure, for some, more than others. Even though my experience was uncomfortable, I also did not have any major life threatening consequences from the transplant itself. It was more that I had unpleasant side effects. To be fair, I was prone to nausea issues before I developed myeloma, so this was my weak point. And, it's hard not to feel fatigued and out of it when you are continuously nauseous.
If you do decide to go forward with the transplant, go to a major center that performs them regularly. Also, it helps if you like your transplant doctor. I didn't particularly like mine, and I knew it from the start, and should have listened to my gut on that. But she was highly recommended by my oncologist. Truth be told, I hardly saw her in the hospital. She ended up in the hospital as a patient herself! But, she was a real cold fish with a bad bedside manner, and in general not a very encouraging presence. It definitely helps to have a supportive doctor when you are going through transplant.
Good luck, and let us know what you decide.
Re: AC's stem cell transplant in South Florida
AC -
Congratulations on your ASCT and a big thank you for taking the time to post about your experience. I had run across your original post a few weeks back, as I am also a patient at Sylvester, so I was of course drawn to the name and I have been looking when I am online for your update. Very glad to see you are doing so well.
I began Velcade, Revlimid, and dexamethasone (VRd) induction treatment with in mid-April and I had my first appointment today to begin the ASCT planning process - hopefully an August / September event if induction continues to go well for me.
Undersranding your experience at Sylvester, even if just brief, is reassuring. Thank you again for sharing your story.
John
Congratulations on your ASCT and a big thank you for taking the time to post about your experience. I had run across your original post a few weeks back, as I am also a patient at Sylvester, so I was of course drawn to the name and I have been looking when I am online for your update. Very glad to see you are doing so well.
I began Velcade, Revlimid, and dexamethasone (VRd) induction treatment with in mid-April and I had my first appointment today to begin the ASCT planning process - hopefully an August / September event if induction continues to go well for me.
Undersranding your experience at Sylvester, even if just brief, is reassuring. Thank you again for sharing your story.
John
-
Pajarito - Name: John
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 16, 2016
- Age at diagnosis: 48
Re: AC's stem cell transplant in South Florida
Ellen - I wish you had a better experience with the stem cell transplant and I will keep you in my thoughts as you continue your journey. I echo your comments on the doctor. I believe the transplant team that someone has can be a big factor on someone's outcome. I consider myself fortunate that I had an amazing doctor at Sylvester but, more importantly, the transplant team at Sylvester was amazing and helped me get through the days that were hard for me (Day +2 to Day +6).
Right now I am on Day +23 and the only issue I am having is a rash from an allergic reaction to the acyclovir. The transplant team communicates with me throughout everyday to make sure I am doing ok and the doctor emails with me back and forth, even during the off hours.
John - you will be in very good hands when you have your stem cell transplant. The entire transplant team is there for you for anything you need. I had nurses and doctors who would come in just to talk and some of them would come in and motivate me to keep going. While you are in Sylvester, take advantage of all the services they offer. Once your platelets are high enough, Sylvester has a massage therapist to provide gentle massage in your bed. The massage can help your stem cells get active.
When you are inpatient, the group that provides the food will make whatever you want and can tolerate. One day I went through 6 foods to try to find something that smelled ok and that I could tolerate. They kept making me foods until we found chicken and rice that I could eat. The nurses too are fabulous. The nurses made me a calendar and they all placed bets on the day I would be released. The calendar provided me motivation that there was an end to what I was going through.
John, I have placed my name as someone who can be contacted by others who will be going through the journey at Sylvester. You can ask them and they can provide my information if you ever want to talk with me. While I am not a doctor or a nurse, I can relate to the experience that you will be going through.
Right now I am on Day +23 and the only issue I am having is a rash from an allergic reaction to the acyclovir. The transplant team communicates with me throughout everyday to make sure I am doing ok and the doctor emails with me back and forth, even during the off hours.
John - you will be in very good hands when you have your stem cell transplant. The entire transplant team is there for you for anything you need. I had nurses and doctors who would come in just to talk and some of them would come in and motivate me to keep going. While you are in Sylvester, take advantage of all the services they offer. Once your platelets are high enough, Sylvester has a massage therapist to provide gentle massage in your bed. The massage can help your stem cells get active.
When you are inpatient, the group that provides the food will make whatever you want and can tolerate. One day I went through 6 foods to try to find something that smelled ok and that I could tolerate. They kept making me foods until we found chicken and rice that I could eat. The nurses too are fabulous. The nurses made me a calendar and they all placed bets on the day I would be released. The calendar provided me motivation that there was an end to what I was going through.
John, I have placed my name as someone who can be contacted by others who will be going through the journey at Sylvester. You can ask them and they can provide my information if you ever want to talk with me. While I am not a doctor or a nurse, I can relate to the experience that you will be going through.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Glad to hear you are doing well. My hubby is just starting the rough days after chemo. Weak, nausea, etc. We are trying your cracker tip. His counts were still good on discharge yesterday. We go to clinic tomorrow and I am sure they will be on the way down. He said this morning staying in this motel will be a long three weeks.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
Thank you AC!
I have been very happy with Sylvester and my myeloma specialist, and my initial meeting with my ASCT doctor last Thursday and the transplant coordinator to understand the unit and care, more so than just the process, reinforced that, as do your comments.
Your first person advice and pointers are a great help - I will take them to heart. I'm focused on a very positive outcome - obviously not without some very difficult days, but understanding the process and other people's direct experience are really helpful to me.
And you may very well be hearing from me!
John.
I have been very happy with Sylvester and my myeloma specialist, and my initial meeting with my ASCT doctor last Thursday and the transplant coordinator to understand the unit and care, more so than just the process, reinforced that, as do your comments.
Your first person advice and pointers are a great help - I will take them to heart. I'm focused on a very positive outcome - obviously not without some very difficult days, but understanding the process and other people's direct experience are really helpful to me.
And you may very well be hearing from me!
John.
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Pajarito - Name: John
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 16, 2016
- Age at diagnosis: 48
Re: AC's stem cell transplant in South Florida
Hi AC and John,
It's been nice to read about your experiences as you are both in the same age group and it seems as if both of you enjoy being active. I have been feeling somewhat alone as there aren't many people our age and active going through this. Being active is a huge part of my personal quality of life, so this has been a big deal. I am 47 and was diagnosed in February, somewhat by accident. My husband and I are ultra trail runners and my only real complaints were performance related. Deep down I figured I was just getting older and not as disciplined as I should be for an "aging" runner, but I had three failures on long races last year that didn't seem to be typical. I got myself into low points that I just couldn't dig myself out of and I DNF'ed. Now I know that my kidneys probably were unable to keep up with the nonsense coming their way. Luckily, I don't have bone lesions and my kidney function isn't too far out of whack yet.
I am in round 3 of chemo now (Revlimid, Velcade, and Dexy's Midnight Runner). Although I haven't had the time to exercise every day, I have been fairly consistent. I am extremely fortunate to have been in pretty good physical fitness when this happened (I ran a 100K ultra trail marathon in January just before diagnosis), but I have definitely scaled back. I am keeping my HR low, so I hike the hills and job the flats and down. On the weekends I often do 10-14 mile days still. I did a 21 mile race this way after round 1 of chemo and managed really well. Since then I have averaged about 25-30 miles a week of combined hiking/jogging, plus some exercise classes.
I am slated to have 4 to 6 rounds of chemo before my stem cell transplant, so like you, John, I may be going for it in August. I will likely be at the Knight Cancer Institute at OHSU in Portland, Oregon, although I may opt to have it at Winship Cancer Institute at Emory in Atlanta (who wouldn't want to be in Atlanta in August?)
AC, did you lose your hair? I saw it looked pretty closely cropped in your escape photos. I was told I wouldn't lose my hair, but there have been some surprises along the way. Your blow-by-blow of how that transplant went was super helpful. It sounds pretty intense. I'll be interested to hear how yours goes, too, John.
Jen
PS Here is a photo of my Boca connection ... Boca is the name of my trail running buddy.
It's been nice to read about your experiences as you are both in the same age group and it seems as if both of you enjoy being active. I have been feeling somewhat alone as there aren't many people our age and active going through this. Being active is a huge part of my personal quality of life, so this has been a big deal. I am 47 and was diagnosed in February, somewhat by accident. My husband and I are ultra trail runners and my only real complaints were performance related. Deep down I figured I was just getting older and not as disciplined as I should be for an "aging" runner, but I had three failures on long races last year that didn't seem to be typical. I got myself into low points that I just couldn't dig myself out of and I DNF'ed. Now I know that my kidneys probably were unable to keep up with the nonsense coming their way. Luckily, I don't have bone lesions and my kidney function isn't too far out of whack yet.
I am in round 3 of chemo now (Revlimid, Velcade, and Dexy's Midnight Runner). Although I haven't had the time to exercise every day, I have been fairly consistent. I am extremely fortunate to have been in pretty good physical fitness when this happened (I ran a 100K ultra trail marathon in January just before diagnosis), but I have definitely scaled back. I am keeping my HR low, so I hike the hills and job the flats and down. On the weekends I often do 10-14 mile days still. I did a 21 mile race this way after round 1 of chemo and managed really well. Since then I have averaged about 25-30 miles a week of combined hiking/jogging, plus some exercise classes.
I am slated to have 4 to 6 rounds of chemo before my stem cell transplant, so like you, John, I may be going for it in August. I will likely be at the Knight Cancer Institute at OHSU in Portland, Oregon, although I may opt to have it at Winship Cancer Institute at Emory in Atlanta (who wouldn't want to be in Atlanta in August?)
AC, did you lose your hair? I saw it looked pretty closely cropped in your escape photos. I was told I wouldn't lose my hair, but there have been some surprises along the way. Your blow-by-blow of how that transplant went was super helpful. It sounds pretty intense. I'll be interested to hear how yours goes, too, John.
Jen
PS Here is a photo of my Boca connection ... Boca is the name of my trail running buddy.
- Boca.jpg (52.24 KiB) Viewed 881 times
Re: AC's stem cell transplant in South Florida
I am Day +26 from my transplant in May. I was lucky that I did not have much side effects of the transplant but I might be unlucky on another front.
I went to my stem cell doctor on Wednesday. All my numbers are good dealing with the stem cell transplant BUT when I looked today at the lab results I saw the below, where my free kappa numbers are at 11.2 elevated from the high free kappa range of 1.94.
Can anyone fill me in on the bottom line of the meaning?
From what I know it appears my myeloma was not killed completely.
Thank you
Component Your Value Standard Range
Free Kappa 11.200 MG/dL 0.330-1.940 MG/dL
Free Lambda 0.276 MG/dL 0.571-2.630 MG/dL
Kappa/Lambda Free Light Chain Ratio 40.580 0.260-1.650
Component Your Value Standard Range
Kappa Light Chain 112.00 mg/dL 170-370 mg/dL
Lambda Light Chain 74.30 mg/dL 90-210 mg/dL
Total Kappa/Lambda Ratio 1.51 1.35-2.65
I went to my stem cell doctor on Wednesday. All my numbers are good dealing with the stem cell transplant BUT when I looked today at the lab results I saw the below, where my free kappa numbers are at 11.2 elevated from the high free kappa range of 1.94.
Can anyone fill me in on the bottom line of the meaning?
From what I know it appears my myeloma was not killed completely.
Thank you
Component Your Value Standard Range
Free Kappa 11.200 MG/dL 0.330-1.940 MG/dL
Free Lambda 0.276 MG/dL 0.571-2.630 MG/dL
Kappa/Lambda Free Light Chain Ratio 40.580 0.260-1.650
Component Your Value Standard Range
Kappa Light Chain 112.00 mg/dL 170-370 mg/dL
Lambda Light Chain 74.30 mg/dL 90-210 mg/dL
Total Kappa/Lambda Ratio 1.51 1.35-2.65
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
Try not to get too upset about the light chain numbers. The important thing here is that your ratio is still normal, which means that both of you light chains are elevated. This is a good thing.
Secondly, you cannot begin to assess the success of a transplant until about the 100th day. That is common knowledge, and every transplant doctor will tell you this. So, try not to read anything into these numbers. You are still very early in the recovery process, and even though things have gone so well for you, I am betting that the rash, and the meds that are being used to control it, have caused a temporary uptick in these light chains. Light chains are very sensitive little animals, and I think doubly so after the body has been assaulted by something like a stem cell transplant. You may feel pretty good, but your body is fighting hard to re-constitute your immune system, which was, after all, been destroyed. Lots of repercussions that you are unaware of.
Any infection or inflammation can cause those light chains to react. I had a respiratory virus a couple of months after transplant, and a dental infection a month later, which required extractions and antibiotics. Both events affected my light chains. They returned to normal shortly thereafter. Did you also have an electrophoresis? If so, what did that show? Sometimes after a transplant, you can have a new protein band appear. That can also be normal as your immune system reconstitutes. But you are still very early in the game, and some docs think that is a good sign of immune system activity. I had that happen to me. It is called oligoclonal banding. Maybe TMI for now? I don't want to make you any more worried than you are, but please try not to get ahead of yourself.
I think you have done fabulously well, and will continue to do so. At diagnosis, which was your affected light chain? But again, since they are both elevated, and your ratio is normal, it is more than likely, perfectly OK. I hope your rash is better. I had lots of itchiness after the transplant, but no rash. Everyone is different.
Hang in there. Don't be afraid to call your doc, if you have access to him during off hours. I am fortunate to have a doc who will answer his cell phone and texts. He has relieved my worries on more than one occasion. There are no points for suffering, remember that. Most myeloma docs are happy to help make you feel better, even if it's not a medical emergency.
Good luck and keep us posted. Do something fun today!
Hang in there, AC!!!!
Ellen Harris
Try not to get too upset about the light chain numbers. The important thing here is that your ratio is still normal, which means that both of you light chains are elevated. This is a good thing.
Secondly, you cannot begin to assess the success of a transplant until about the 100th day. That is common knowledge, and every transplant doctor will tell you this. So, try not to read anything into these numbers. You are still very early in the recovery process, and even though things have gone so well for you, I am betting that the rash, and the meds that are being used to control it, have caused a temporary uptick in these light chains. Light chains are very sensitive little animals, and I think doubly so after the body has been assaulted by something like a stem cell transplant. You may feel pretty good, but your body is fighting hard to re-constitute your immune system, which was, after all, been destroyed. Lots of repercussions that you are unaware of.
Any infection or inflammation can cause those light chains to react. I had a respiratory virus a couple of months after transplant, and a dental infection a month later, which required extractions and antibiotics. Both events affected my light chains. They returned to normal shortly thereafter. Did you also have an electrophoresis? If so, what did that show? Sometimes after a transplant, you can have a new protein band appear. That can also be normal as your immune system reconstitutes. But you are still very early in the game, and some docs think that is a good sign of immune system activity. I had that happen to me. It is called oligoclonal banding. Maybe TMI for now? I don't want to make you any more worried than you are, but please try not to get ahead of yourself.
I think you have done fabulously well, and will continue to do so. At diagnosis, which was your affected light chain? But again, since they are both elevated, and your ratio is normal, it is more than likely, perfectly OK. I hope your rash is better. I had lots of itchiness after the transplant, but no rash. Everyone is different.
Hang in there. Don't be afraid to call your doc, if you have access to him during off hours. I am fortunate to have a doc who will answer his cell phone and texts. He has relieved my worries on more than one occasion. There are no points for suffering, remember that. Most myeloma docs are happy to help make you feel better, even if it's not a medical emergency.
Good luck and keep us posted. Do something fun today!
Hang in there, AC!!!!
Ellen Harris
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