After 4 rounds of induction therapy from April until July of 2017, along with a lots of testing at both my local clinic and Vanderbilt Cancer Center (Nashville, Tennessee), the stem cell transplant process started last Thursday, September 14, with a check-up and labs before the installation of the lines into my chest on Friday, a big round of chemotherapy on Sunday (Cytoxan), and on Monday, the beginning of the Xarxio (biosimilar Neupogen), which will continue through at least next Tuesday, September 26.
My observations so far are:
Don’t assume where your transplant will happen
We have a transplant facility in our home town, but it was not recognized by our insurance, so we were referred to the Vanderbilt Cancer Clinic, which is recognized by our insurance. The difference was staying at home and a 20-minute drive to the facility and staying in hotels/short-term apartment two hours away from home. This was a disappointment and we are definitely not as comfortable in Nashville as we would be at home, but there is nothing we can do about the decisions made by our insurance company and my employer.
What is in a name?
We have been thrown into a loop several times when the treatment drugs change names from one day to the next. An example: Neupogen on Saturday became Xarxio on Sunday. When I went to the pharmacy to pick up my Neupogen as directed, the pharmacist told me my Xarxio would be ready shortly. When I asked the pharmacist why I was given Xarxio instead of the expected Neupogen, he could not answer me, which led me back to the stem cell transplant clinic in a snit on why my treatment had changed without my being told in advance. After some explanations, I managed to calm down and headed back to the pharmacy where I apologized for being snippy with them, which they took with good humor.
Heal thyself
I didn’t find out that the Neupogen/Xarxio infusions would be for all of the days between the initial injections through the stem cell collection day until we arrived and received our schedule for the first 30 days from September 14 through October 13. The bells went off within a few minutes of looking at that schedule as we realized that I/my wife would have to inject the Xarxio at home for all but the initial day of treatment. Having never given myself an injection, nor had my wife ever given anyone an injection, this was a bit of an epiphany. I gave myself the first set of three injections today into my abdomen, much like the Velcade infusion process, and while I was not as efficient as the nurses were at either my home clinic or at Vanderbilt, the Xarxio got where it was supposed to go with no accidents or failures. Good thing I am not too squeamish; this might be a problem for someone who is though.
Patience is a virtue
In this whole process, I have noticed that both my local clinic and Vanderbilt are overflowing with patients. This disease is growing faster than the clinics can grow. In both of my cases, the case load is growing faster than they can hire new doctors, PAs, nurses, and administrative staff. This requires patience on our parts. Even though we feel as if we are the center of the universe, we need to see ourselves as just one patient in many. That may not be what it is supposed to be like, but it is in my case and may well be in your case as well. Be nice to them anyway, try not to be too difficult if you can avoid it, and be nice to your fellow patients too. We are all members of the Myeloma Club, and we need to remember that all of us are here to not only fight this dreaded disease, but also to support those who support us, and to be a friend to those who might be having a worse day than we are on any given day in the process.
Forums
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Lots of uncertainty right now. After a week of Xarxio (biosimilar Neupogen), my WBC count is very low and it's not clear the transplant center still wants us to come in today. I was thinking my numbers would be better after a few days of bone pain due to the Xarxio, but that was not the case.
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Things got a little crazy last night when I developed a fever of 100.6 F (38.1 C) and went to the ER. The fever was gone before I was triaged, but my very low white blood cell count resulted in my being admitted overnight.
Lots of antibiotics, lots of poking and prodding, and a late start to my stem cell collection followed. I wasn't sure how that would work out, but I was pleasantly surprised with over 9 million being harvested in just 3.5 hours this afternoon. Adding to that my WBC counts has rebounded and hopefully I will be released tomorrow for my last week at home prior to the big transplant event.
Lots of antibiotics, lots of poking and prodding, and a late start to my stem cell collection followed. I wasn't sure how that would work out, but I was pleasantly surprised with over 9 million being harvested in just 3.5 hours this afternoon. Adding to that my WBC counts has rebounded and hopefully I will be released tomorrow for my last week at home prior to the big transplant event.
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Great posts Doug! I will be following your posts closely, as I am doing my workups for my autologous stem cell transplant next month. I will meet with my transplant doctor October 10th, and Neupogen shots, stem cell harvest, and transplant will follow. I live in Hawaii, but will have my transplant done in southern California. Stay strong bro! Aloha and God Bless!
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Bo808 - Name: Bo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb' 2017
- Age at diagnosis: 54
Re: Doug's stem cell transplant journey has begun
Thanks Bo808!
I plan on volunteering at my local cancer clinic to help others who find themselves facing this evil disease. I didn't even know what multiple myeloma was when I was diagnosed with it, and it took a lot of time for me to figure out what that meant for me and my family's future. This website helped a lot, but it would have been nice to have someone to sit and talk to me face to face when I was diagnosed. I intend to be that person for others who follow me on my multiple myeloma journey.
Good luck in your journey, aloha to you and your family, and may God bless you with healing and peace as you go!
I plan on volunteering at my local cancer clinic to help others who find themselves facing this evil disease. I didn't even know what multiple myeloma was when I was diagnosed with it, and it took a lot of time for me to figure out what that meant for me and my family's future. This website helped a lot, but it would have been nice to have someone to sit and talk to me face to face when I was diagnosed. I intend to be that person for others who follow me on my multiple myeloma journey.
Good luck in your journey, aloha to you and your family, and may God bless you with healing and peace as you go!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
My hair started falling out last Friday, so I said goodbye to it on Sunday as my wife cut and shaved it down to the skin. I've had extremely short hair before at various stages of my life, particularly during my military career, but this is my first "bald" experience. It doesn't feel as cold as I expected, nor did my pillow feel any different last night, but the feel of my scalp was unexpectedly sticky as my skin has changed somewhat during the chemo and pre-transplant procedures that have occurred.
My wife helped me with the cutting and shaving as she had with her mother in her fight with ovarian cancer. We talked about that, contrasting the two experiences / emotions as she worked. In her mother's case, it was more emotional, of course, as women normally identify their femininity with their hair. In my case, my hair means little to my masculinity, making the removal of my hair on my terms a form of defiance against the cancer and the treatment for it. There was some emotion though, the kind felt when taking that first step into the cancer clinic, or the start of a new journey that ends one phase of life and starts a new phase.
My wife helped me with the cutting and shaving as she had with her mother in her fight with ovarian cancer. We talked about that, contrasting the two experiences / emotions as she worked. In her mother's case, it was more emotional, of course, as women normally identify their femininity with their hair. In my case, my hair means little to my masculinity, making the removal of my hair on my terms a form of defiance against the cancer and the treatment for it. There was some emotion though, the kind felt when taking that first step into the cancer clinic, or the start of a new journey that ends one phase of life and starts a new phase.
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
The moment of truth is looming, we just moved into our temporary apartment near the transplant center, and this weekend will be the start of the chemotherapy that leads to the stem cell reinfusion next Tuesday. It's nice to reach this stage of the process, with a hope of getting back to some semblance of normality in a few months. Normality in my case means training for triathlons, long distance cycling and swimming. Running is the big question mark so far with peripheral neuropathy possibly keeping me from run training.
The running question is for the future though, the stem cell transplant process is the current challenge. Not sure how it will go, but I am hopeful that my fitness and relatively strong metabolism will carry me through the process with flying colors!
The running question is for the future though, the stem cell transplant process is the current challenge. Not sure how it will go, but I am hopeful that my fitness and relatively strong metabolism will carry me through the process with flying colors!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Sitting next to an empty IV bag with a mouthful of ice, the end of my second day of high-dose chemo. Tomorrow is my rest day before the stem cell transplant, after which it becomes a recovery game.
The high-dose chemotherapy was both easier and worse than my earlier myeloma treatment. Worse in that I had some irritations in my esophagus despite chomping down a lot of ice. Better in that it only took about 30 minutes each day and I had less "chemo brain" from this drug (melphalan) than even the Revlimid, Velcade, and dexamethasone (RVD) combo. They gave me anti-nausea drugs along with dexamethasone to counteract some of the side effects of the melphalan.
So far the process has been less difficult than I feared it would be, but the worst is reputed to start after the transplant day as the effects of the melphalan reach their peak. The dex I took with yesterdays melphalan infusion had the usual effect on my appetite as I went into "eat all the food!" mode, gaining 3 pounds in one day.
Of all the drugs I had prescribed , the dex has been the least disliked in that I kept nearly all my weight through the entire treatment plan because of the dex. I try to look at the bright side as much as I can, and keeping my weight up has been one of the bright sides!
The high-dose chemotherapy was both easier and worse than my earlier myeloma treatment. Worse in that I had some irritations in my esophagus despite chomping down a lot of ice. Better in that it only took about 30 minutes each day and I had less "chemo brain" from this drug (melphalan) than even the Revlimid, Velcade, and dexamethasone (RVD) combo. They gave me anti-nausea drugs along with dexamethasone to counteract some of the side effects of the melphalan.
So far the process has been less difficult than I feared it would be, but the worst is reputed to start after the transplant day as the effects of the melphalan reach their peak. The dex I took with yesterdays melphalan infusion had the usual effect on my appetite as I went into "eat all the food!" mode, gaining 3 pounds in one day.
Of all the drugs I had prescribed , the dex has been the least disliked in that I kept nearly all my weight through the entire treatment plan because of the dex. I try to look at the bright side as much as I can, and keeping my weight up has been one of the bright sides!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Good luck Doug. I too was diagnosed in March of 2017, and I'm headed to my autologous stem cell transplant (ASCT) in November. Looking forward to your posts about your experience and wish you well on this part of the journey.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Doug's stem cell transplant journey has begun
Rest day before Day 0, transplant day. Definitely feeling the effects of the melphalan today, my first episode of nausea and a fair amount of bone/joint pain as the melphalan does its job. I asked my nurse about when I would experience these affects and she said that they could occur as early as today, so I was mentally prepared for the unpleasantness.
I also start the transplant series of drugs today, the antibiotics, anti-yeast infection, and the like. Not sure how they will go, it's all about managing the side effects and trying to not make bowel or nausea issues worse, if possible.
It looks to be a challenging couple of weeks ahead, definitely more intense than earlier phases of my treatments. Having my wife at my side is a tremendous blessing, it would be nearly impossible to do this as an outpatient without her!
I also start the transplant series of drugs today, the antibiotics, anti-yeast infection, and the like. Not sure how they will go, it's all about managing the side effects and trying to not make bowel or nausea issues worse, if possible.
It looks to be a challenging couple of weeks ahead, definitely more intense than earlier phases of my treatments. Having my wife at my side is a tremendous blessing, it would be nearly impossible to do this as an outpatient without her!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
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