My name is Steve and I joined the exclusive multiple myeloma club on Sept 29, 2011 at the age of 56. I've been lurking in the background here for several months and finally decided to come out from behind the shadows. Kevin Jones recent article about the "new normal" really got me thinking about my "new normal".
Here's my story:
Early last year I hurt my back while carrying 75-80 lbs up the stairs. It was hurting pretty bad for a few weeks but finally went away. I didn't give it a second thought and attributed it to me getting older. In July I was diagnosed with a possible heart problem and at first I thought it was only a minor/moderate problem but as more and more tests were performed it became apparent that I could have a major problem. I was scheduled for a heart catheterization on Aug 31st. Six days before my heart catheterization I turned/twisted my back about 40-45 degrees and felt something give bigtime. There was no pain at the time but I remember thinking "What the H*LL was THAT??". The next morning I woke up with very bad back pain which quickly turned into horrible back pain. At the Doctors office I was in too much pain to get on the X-ray table and told the Doctor that I would come back the next week after my heart catheterization. By the time I left the Dr's office the pain was EXCRUCIATING and I spent the next 48 hours in bed. I had no idea at that time that my days of "normal" would NEVER be the same again. I also had no idea what the next 34 days would bring as it wasn't pretty.
On Aug 31'st I had my heart catheterization. I was thinking that worse case would be that I would need a stent or 2 and that I'd be home the next day enjoying life. Unfortunately, the news wasn't good as I had 3 major blockages - 100%, 100% and 70%. A day and a half later I was in the operating room for a triple bypass. The funny thing is that other than my back pain I felt GREAT and couldn't believe my heart was in such bad shape. The operation went well and I woke up after a couple of hours feeling fine. The next day I had a scare when my heart went into arrhythmia for about 30 minutes. At one point my heart rate registered at 218 for about 30 seconds. It's not that my heart was pounding but instead it was in a state of what I call super-flutter. I remember thinking "Is today the day?". It took 3 different medicines but the doctors finally got it under control and I haven't had any arrhythmia problems since. The doctors told me it was no big deal and quite common after heart surgery. I told them it was a big deal in my world. Another scare was on day 2 when my respirations were quite high (38-45) for 3-4 hours. For whatever reason my respirations went back to normal and I have been fine since.
After a week in the hospital I was released. I was surprised that I didn't feel better than I did. I was feeling weak and a little light headed sometimes after standing up. At home my recovery was coming along very slowly and after a few weeks things started going downhill as I was getting very weak. Things continued to go downhill and I called my cardiologist who agreed to see me immediately. They drew blood and said they would call me Monday morning (this was on a Friday). On Monday morning they called and told me to immediately go to the ER as I was anemic and it appeared I may have an issue with my kidneys. I was admitted to the hospital and quickly learned that I was indeed anemic (6.9), dehydrated, and my kidneys were failing. After 4 days of numerous tests I finally heard those dreaded words "You have Stage 3 Multiple Myeloma. It’s cancer”. They also did a full body X-ray which revealed an 80% compression fracture of T12 which explained my still very, very, very painful back (I've lost over 2 inches in height). I also have multiple lesions in my skull and back.
I started cancer treatments on Oct 4th and finally started to feel better about the second week of November and have steadily improved since then. I had some of the usual Velcade/Dex side effects including a lot of muscle loss (getting much better), severe muscle ache in my calves (not cramps), insomnia, and PN. The PN to my right foot was significant but has improved dramatically since the beginning of 2012. If I had to do it over again I would have insisted on more blood transfusions as it was January before my hemoglobin level finally reached 13.7. When it was low ( less then 10) I was walking around the house holding on to the furniture and walls.
Here are the tests/procedure I had in July-Dec of 2011.
26 Doctor visits, 2 Hospital Admissions (8 days and 6 days), Chest X-ray (3), Full body X-ray, Spinal X-ray, Heart catheterization, Echocardiogram (4), CUS (echo of carotid arteries), Stress test (treadmill), stress test (nuclear), Open heart surgery (triple bypass), Port installation, Blood transfusion (3), Bone Marrow Biopsy, Blood draws (30+), Chemo treatments (14), Prescription pills taken - 1000+ (I had only taken 200 or so in my life)
I've decided that my new normal needs to be in phases and that July-Dec of 2011 was my phase 1. Now on to phase 2.
Phase 2 has been fantastic. My back is s l o w l y getting better but I still have significant back pain when not taking painkillers. I'm able to manage the pain with Hydrocodone which is a miracle drug as far as I'm concerned. The PN in my right foot has improved dramatically since I've cut back on the Velcade. Other than these 2 issues I don't feel sick at all and am shocked at how great I feel compared to 5 months ago.
Now for the real reason I'm posting here. My M-spike initially was a 5.1 and, like many people, dropped pretty fast in the beginning. By December it is was down to .4 but in January it had had only dropped an additional tenth to .3 so it looked for certain that I wasn't going to achieve a CR. I had met with some of the transplant team in December and was in the process of scheduling my SCT. I was very pleasantly surprised that my next blood test revealed only a trace amount of M-Protein.
After a few weeks of thinking about it I've decided not to get a SCT at this time. I know that most people who get a SCT do fine but there are some who have some serious side effects. I don't want a repeat of my "Phase 1 of new normal". I'm thinking the idea of a SCT is to reach a CR and if I'm already there does it matter how I got there? My hematologist/oncologist, who is an awesome Doctor, is a big believer in SCT and is recommending that I go forward with it. He says that we need to kill as much of the cancer as we can and that "The time is now". And let's face it, my Doctor is a lot smarter than I am.
So, my question to all of you out there in Beacon Land is "What would you do if you were in my shoes?"
Forums
Re: Steve's story and should I get a SCT?
Steve,
Wow - you certainly have been thrugh a lot in the past year! I'm so sorry, but glad you are doing better. I can't tell you whether or not to have a SCT, but I will suggest you make your decision based on your personal belief about the need/effectiveness of a SCT, not on your past health issues. There are many on this site who will tell you to have an SCT early in the course of your disease, others will say wait until first relapse. Then there are those who say it is unnecssary given some of the newer drugs, and still others who will tell you to have two, back to back! Very confusing!
Before you are cleared to have a SCT you will undergo many, many more tests to make sure that you are healthy enough to handle it. If you do decide to have one, it will be uncomfortable, you will be sick, and you will wish you hadn't done it...but you will get better. The doctors and nurses in transplant centers are well trained to take care of any situation that comes up, and I suspect they have seen it all.
Good luck with your decision.
Lyn
Wow - you certainly have been thrugh a lot in the past year! I'm so sorry, but glad you are doing better. I can't tell you whether or not to have a SCT, but I will suggest you make your decision based on your personal belief about the need/effectiveness of a SCT, not on your past health issues. There are many on this site who will tell you to have an SCT early in the course of your disease, others will say wait until first relapse. Then there are those who say it is unnecssary given some of the newer drugs, and still others who will tell you to have two, back to back! Very confusing!
Before you are cleared to have a SCT you will undergo many, many more tests to make sure that you are healthy enough to handle it. If you do decide to have one, it will be uncomfortable, you will be sick, and you will wish you hadn't done it...but you will get better. The doctors and nurses in transplant centers are well trained to take care of any situation that comes up, and I suspect they have seen it all.
Good luck with your decision.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Steve's story and should I get a SCT?
I also had a near complete remission with Velcade, and had my stem cells taken for future use. After almost a year, I started having irregular bloods, but no rise in M spike (which was still "trace")
My doc ordered a PET scan and some areas in my bones lit up, so I decided to proceed to the SCT. I took Revlimid for three months before.
The SCT is, like mentioned above, pretty intense, but worth it in the end. My M spike dropped even further to "not detectible." That was September 2010.
As to advise: can they harvest your stem cells now to save for possible relapse? That's what I did, and it worked out well. This would give you lots of time to recover from your other health issues.
Julia
My doc ordered a PET scan and some areas in my bones lit up, so I decided to proceed to the SCT. I took Revlimid for three months before.
The SCT is, like mentioned above, pretty intense, but worth it in the end. My M spike dropped even further to "not detectible." That was September 2010.
As to advise: can they harvest your stem cells now to save for possible relapse? That's what I did, and it worked out well. This would give you lots of time to recover from your other health issues.
Julia
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Steve's story and should I get a SCT?
hi Steve,
Are you getting bisphosphonate treatments for your bone pain? That helped me a lot with recovering from vertebral fractures.
Christa's Mom and Juby Anne's comments seem wise! I think that no one can really advise you, but you should read up on the scientific studies done....lots on info on the Beacon site! Then you can make your best decision.
Are you getting bisphosphonate treatments for your bone pain? That helped me a lot with recovering from vertebral fractures.
Christa's Mom and Juby Anne's comments seem wise! I think that no one can really advise you, but you should read up on the scientific studies done....lots on info on the Beacon site! Then you can make your best decision.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Steve's story and should I get a SCT?
Hi Steve
I think You have gotten great advice from Christas mom,Jubyanne and Nancy. All I can add is Good Luck and hang in there. Sounds like you are on the right track and well informed. Keep searching.
Best wishes and Thank You for sharing
Art
I think You have gotten great advice from Christas mom,Jubyanne and Nancy. All I can add is Good Luck and hang in there. Sounds like you are on the right track and well informed. Keep searching.
Best wishes and Thank You for sharing
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Steve's story and should I get a SCT?
Hi I've got more Questions than Answers , first of all most of you seem to be more fimiliar than I with the terms used regarding Multiple Myeloma , so on occasion you lose me using acronyms , regarding Steves loss of height , I will say at one time I was 5"11" and at last measurement I was 5' 7" a loss of about 4" I only have back pain if I stand for a length of time ,sitting down or lieing down I'm fine _ considering my height loss I would say you are lucky you only lost 2" - (stay with me I'll get there) My main question concerns SCT (Stem Cell Transplant?) I have been in remission for about 8 years now & never had a SCT of any kind I was wondering if you have the stem cells removed and stored how long can they remain in Storage ? I know there is a shelf life on Blood is it the same with Stem Cells? N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Steve's story and should I get a SCT?
There is a major debate among multiple myeloma experts on the need and effectiveness of SCT or the double SCT as promoted by City of Hope, multiple myeloma hospital in Little Rock.
The use of novel agents in combination, such as RVD with Zometa or Aredia is what is now commonly prescribed as initial or induction therapy. For many, that is all they need to achieve a CR. If that occurs then the main treatment philosophy is maintaining the CR as long as possible. The question is should RVD protocol be reduced to maintenance levels or should the patient move to SCT. Even with SCT some form of maintenance is more than likely going to be recommended and Revlimid and Dex are becoming the maintenance therapy most often recommended. If that is the case, then little if anything is gained from the SCT.
In that case most will wait until relapse to consider SCT.
IF however the patient has a marginal response to RVD then it would appear that a SCT would be appropriate.
The tough one is what do you do with a response that is in-between a CR and a mere partial reasponse. If you have a near CR or very good partial response the decision becomes tougher. Then it becomes a matter of quality of life issues and risk benefit. If your quality of life is good and the response was high enough for you to have a decent quality of life then you may wish to postpone the decision unitl first relapse.
I never had a SCT but have maintained a CR going on 3 years with a VRD plus Aredia treatment. Over time my oncolocgis has reduced the amount of the drugs and increased the timing between infusions. I work full time, ride a bicycle competitively and generally have had a very good QOL. My decision was not to have the SCT since I didn't think it would make things better and is risky.
If my QOL was not so good due to the multiple myeloma then I might have made a different decsion as to SCT.
Bottom line is it becomes a decision you must weigh and consider based upon your QOL and reactions to treatment.
multiple myeloma is not currently curable despite what some may tell you. After a SCT you will likely be on maintenance and that will likely last indefinitely. A CR does not mean you will never relpase but it is a positive indicator of long term QOL before relapse.
Ron
The use of novel agents in combination, such as RVD with Zometa or Aredia is what is now commonly prescribed as initial or induction therapy. For many, that is all they need to achieve a CR. If that occurs then the main treatment philosophy is maintaining the CR as long as possible. The question is should RVD protocol be reduced to maintenance levels or should the patient move to SCT. Even with SCT some form of maintenance is more than likely going to be recommended and Revlimid and Dex are becoming the maintenance therapy most often recommended. If that is the case, then little if anything is gained from the SCT.
In that case most will wait until relapse to consider SCT.
IF however the patient has a marginal response to RVD then it would appear that a SCT would be appropriate.
The tough one is what do you do with a response that is in-between a CR and a mere partial reasponse. If you have a near CR or very good partial response the decision becomes tougher. Then it becomes a matter of quality of life issues and risk benefit. If your quality of life is good and the response was high enough for you to have a decent quality of life then you may wish to postpone the decision unitl first relapse.
I never had a SCT but have maintained a CR going on 3 years with a VRD plus Aredia treatment. Over time my oncolocgis has reduced the amount of the drugs and increased the timing between infusions. I work full time, ride a bicycle competitively and generally have had a very good QOL. My decision was not to have the SCT since I didn't think it would make things better and is risky.
If my QOL was not so good due to the multiple myeloma then I might have made a different decsion as to SCT.
Bottom line is it becomes a decision you must weigh and consider based upon your QOL and reactions to treatment.
multiple myeloma is not currently curable despite what some may tell you. After a SCT you will likely be on maintenance and that will likely last indefinitely. A CR does not mean you will never relpase but it is a positive indicator of long term QOL before relapse.
Ron
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Ron Harvot
Re: Steve's story and should I get a SCT?
Thanks to each of you for taking the time to respond as I really appreciate it. I guess the real problem for me is that I’m really enjoying my current quality of life as I never thought I’d feel this good again. With my current numbers so good I just don’t want to take the risk of having a SCT at this time. To me quality of life is much more important than how long I live. Of course I say that now as I’m just starting my multiple myeloma battle and I very well may be singing a different tune down the road.
Lyn wrote: “Before you are cleared to have a SCT you will undergo many, many more tests to make sure that you are healthy enough to handle it.”
I’m pretty sure I’m healthy enough for a SCT at this time as the major issue would have been my heart. I had another nuclear stress test and echo last month and my cardiologist told me that I couldn’t have asked for a better outcome to my heart surgery and he has given me the green light to proceed with a STC. The problem is I don’t want to go through a bunch more tests, another port install, feeling like cr*p again for a few months, and at least 21 days of daily trips to the hospital.
Julia wrote “can they harvest your stem cells now to save for possible relapse?”
This is one thing I am considering but haven’t made up my mind yet.
Nancy wrote: “Are you getting bisphosphonate treatments for your bone pain?”
Not at this time but I’ll ask my Doctor about it next week. My back is getting better on it’s own but at a snails pace.
Nipon wrote: “I have been in remission for about 8 years now & never had a SCT of any kind I was wondering if you have the stem cells removed and stored how long can they remain in Storage ?”
I don’t know but maybe someone else can chime in and answer that question for you.
Ron wrote: “…The tough one is what do you do with a response that is in-between a CR and a mere partial reasponse. If you have a near CR or very good partial response the decision becomes tougher. Then it becomes a matter of quality of life issues and risk benefit. If your quality of life is good and the response was high enough for you to have a decent quality of life then you may wish to postpone the decision unitl first relapse”.
This is pretty much what I’m thinking.
Lyn wrote: “Before you are cleared to have a SCT you will undergo many, many more tests to make sure that you are healthy enough to handle it.”
I’m pretty sure I’m healthy enough for a SCT at this time as the major issue would have been my heart. I had another nuclear stress test and echo last month and my cardiologist told me that I couldn’t have asked for a better outcome to my heart surgery and he has given me the green light to proceed with a STC. The problem is I don’t want to go through a bunch more tests, another port install, feeling like cr*p again for a few months, and at least 21 days of daily trips to the hospital.
Julia wrote “can they harvest your stem cells now to save for possible relapse?”
This is one thing I am considering but haven’t made up my mind yet.
Nancy wrote: “Are you getting bisphosphonate treatments for your bone pain?”
Not at this time but I’ll ask my Doctor about it next week. My back is getting better on it’s own but at a snails pace.
Nipon wrote: “I have been in remission for about 8 years now & never had a SCT of any kind I was wondering if you have the stem cells removed and stored how long can they remain in Storage ?”
I don’t know but maybe someone else can chime in and answer that question for you.
Ron wrote: “…The tough one is what do you do with a response that is in-between a CR and a mere partial reasponse. If you have a near CR or very good partial response the decision becomes tougher. Then it becomes a matter of quality of life issues and risk benefit. If your quality of life is good and the response was high enough for you to have a decent quality of life then you may wish to postpone the decision unitl first relapse”.
This is pretty much what I’m thinking.
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SouthernYankee - Name: Steve S.
- When were you/they diagnosed?: Sep 29, 2011
- Age at diagnosis: 56
Re: Steve's story and should I get a SCT?
When I was experiencing severe back pain due to compression fractures, I was prescribed the Fentynal patch (hydrocodone did nothing for me). It helped me get through the healing. 8 years later, I am still three inches shorter and experience stiffness in my back, but the pain is gone. Zometa also helped with the bone issues.
I also had kidney failure that required dialysis and plasmapheresis prior to starting chemo, but I have had no further kidney problems, even after SCT. I can only imagine your concern about the heart, but if your doctor feels you are a candidate for SCT, it may be the way to go. At least have the stemcells harvested now while the myeloma has diminished.
Ultimately, all of this is up to you. I turned down a second transplant that was recommened because at that time I felt that I had been through far too much to handle it. None of this is easy.
I wish you well, Steve.
I also had kidney failure that required dialysis and plasmapheresis prior to starting chemo, but I have had no further kidney problems, even after SCT. I can only imagine your concern about the heart, but if your doctor feels you are a candidate for SCT, it may be the way to go. At least have the stemcells harvested now while the myeloma has diminished.
Ultimately, all of this is up to you. I turned down a second transplant that was recommened because at that time I felt that I had been through far too much to handle it. None of this is easy.
I wish you well, Steve.
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Steve's story and should I get a SCT?
I made my decision final and notified the transplant team today that I would not be getting a transplant at this time. They say "A bird in hand is worth 2 in the bush". I've always been a gambler but in this case I don't see the "2 in the bush" (not sure I even see 1 in the bush").
Thank again to all of you who responded.
--Steve
Thank again to all of you who responded.
--Steve
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SouthernYankee - Name: Steve S.
- When were you/they diagnosed?: Sep 29, 2011
- Age at diagnosis: 56
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