Beacon forum member community KimT will soon be undergoing an autologous stem cell transplant as part of her initial treatment for multiple myeloma. She has generously agreed to share with all of us updates about her experience.
Please join us in thanking her for being willing to share with us her experience and in wishing her the best of luck with her transplant.
Kim will have her central line put in on July 31 and will check in on August 15 at the Stanford Cancer Center for her inpatient transplant.
Kim joins several other members of the Beacon community who recently have been undergoing transplants and documenting the process here for all of us. The discussion threads with updates about other forum member's transplants can be found here:
Steve Mohr's Stem Cell Transplant
Karen's Stem Cell Transplant
MattSchtick's Stem Cell Transplant
Larry's Stem Cell Transplant
Mister Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)
If you will be doing a transplant in the near future and also would like to share your experience, please let us know. We'll be glad to help you do so.
Good luck Kim!
Forums
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Kim,
My advice to you is make sure your room has a nice TV with a remote control.
I had 2 back to back SCT's. If I had to describe how I felt, I'd say it was like a constant mild hangover. Not horrible, just one of those hangovers where you feel like you want to sit on the couch and watch TV. I didn't really want to read, didn't want long visits. I enjoyed visits by doctors, nurses, meals etc. All in all not bad.
Good luck to you! Stann
My advice to you is make sure your room has a nice TV with a remote control.
I had 2 back to back SCT's. If I had to describe how I felt, I'd say it was like a constant mild hangover. Not horrible, just one of those hangovers where you feel like you want to sit on the couch and watch TV. I didn't really want to read, didn't want long visits. I enjoyed visits by doctors, nurses, meals etc. All in all not bad.
Good luck to you! Stann
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Good luck Kim ! All good thoughts your way! 
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Thank you for the good wishes. I am ready to get started and am looking forward to sharing my experiences with you.
I'll start with a little bit of background. Over the course of this week, I'll get you up to date. I'm working in my pet sitting business while I can and preparing for my going away party.
I'm 54, married to my husband, Howard, for 31 years. We have 4 children, boys that are 24, 21 and 13, and a daughter who is 16. They are smart, funny, healthy and pretty well adjusted – in spite of having us for parents.
At the beginning of 2013, things were going well. I was training for a marathon in March. It was to be my 9th one. I had run the Boston Marathon in 2009, 2010, and 2011, but I had been in a running slump since the last one. So I had started working with a coach in 2012. Unfortunately, although I was back on track to qualify again, I had to stop training a month before the race due to a case of plantar fasciitis (PF).
I saw a doctor in late March. She wanted to inject my foot with cortisone but wouldn't do so without an ultrasound because she noticed both my legs were swollen, especially my ankles. Satisfied that it showed nothing, she gave the shot. (Which sadly, did nothing.) She did not do any lab work. (Would have been a good idea, I found out later!)
My PF did not get better. I was referred to a podiatrist and began wearing a boot. During this time, I stubbornly refused to drop out of an ultramarathon I had entered. So in May, I walked 31 miles in the boot, on a trail, on a cattle ranch! And I wasn't even the last to finish! However, that day my hands got so swollen I could barely use them. My ankles looked worse too. My friends and family finally convinced me to go back to the doctor. But by this time, we had switched health insurance from Kaiser to Cigna, and I had no doctor.
I ended up at an urgent care facility when no one else would see me. I was lucky to have the Physician's Assistant that I did. She ran lab work, noticed low protein in my blood, and tested my urine. It had a lot of protein. She told me I needed a nephrologist. We had to do a lot of running around, getting me an actual real doctor, so I could see one. You cannot be referred by a PA, it turns out.
I was able to get into see the nephrologist in mid June. By this time, I had researched and knew I would need a kidney biopsy. She gave me the choice of doing it right away or waiting a few months, as my 24-hour urine was at about 2200 mg, under the true threshold for nephrotic syndrome. But I wanted it done, like, yesterday. So it happened in a couple of weeks.
I got the results in mid July of 2013, just as my foot had finally healed up. I was expecting some kind of kidney disorder and was mainly concerned about how it would affect my running. I was in for a shock. I was diagnosed with amyloidosis. Luckily, they found it early, but like multiple myeloma, amyloidosis has no cure.
I had a bone marrow biopsy the next week and it revealed 40% plasma cells. The hits just kept coming! So I was told I have smoldering myeloma too! I got started on treatment right away.
But that's enough, quite enough, for today ....(I apologize for the length, my posts in the future will not be so long)
I'll start with a little bit of background. Over the course of this week, I'll get you up to date. I'm working in my pet sitting business while I can and preparing for my going away party.
I'm 54, married to my husband, Howard, for 31 years. We have 4 children, boys that are 24, 21 and 13, and a daughter who is 16. They are smart, funny, healthy and pretty well adjusted – in spite of having us for parents.
At the beginning of 2013, things were going well. I was training for a marathon in March. It was to be my 9th one. I had run the Boston Marathon in 2009, 2010, and 2011, but I had been in a running slump since the last one. So I had started working with a coach in 2012. Unfortunately, although I was back on track to qualify again, I had to stop training a month before the race due to a case of plantar fasciitis (PF).
I saw a doctor in late March. She wanted to inject my foot with cortisone but wouldn't do so without an ultrasound because she noticed both my legs were swollen, especially my ankles. Satisfied that it showed nothing, she gave the shot. (Which sadly, did nothing.) She did not do any lab work. (Would have been a good idea, I found out later!)
My PF did not get better. I was referred to a podiatrist and began wearing a boot. During this time, I stubbornly refused to drop out of an ultramarathon I had entered. So in May, I walked 31 miles in the boot, on a trail, on a cattle ranch! And I wasn't even the last to finish! However, that day my hands got so swollen I could barely use them. My ankles looked worse too. My friends and family finally convinced me to go back to the doctor. But by this time, we had switched health insurance from Kaiser to Cigna, and I had no doctor.
I ended up at an urgent care facility when no one else would see me. I was lucky to have the Physician's Assistant that I did. She ran lab work, noticed low protein in my blood, and tested my urine. It had a lot of protein. She told me I needed a nephrologist. We had to do a lot of running around, getting me an actual real doctor, so I could see one. You cannot be referred by a PA, it turns out.
I was able to get into see the nephrologist in mid June. By this time, I had researched and knew I would need a kidney biopsy. She gave me the choice of doing it right away or waiting a few months, as my 24-hour urine was at about 2200 mg, under the true threshold for nephrotic syndrome. But I wanted it done, like, yesterday. So it happened in a couple of weeks.
I got the results in mid July of 2013, just as my foot had finally healed up. I was expecting some kind of kidney disorder and was mainly concerned about how it would affect my running. I was in for a shock. I was diagnosed with amyloidosis. Luckily, they found it early, but like multiple myeloma, amyloidosis has no cure.
I had a bone marrow biopsy the next week and it revealed 40% plasma cells. The hits just kept coming! So I was told I have smoldering myeloma too! I got started on treatment right away.
But that's enough, quite enough, for today ....(I apologize for the length, my posts in the future will not be so long)
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Hi Kim,
Wow ... what a story.
I was diagnosed about 5 years ago with multiple myeloma and primary amylodosis. multiple myeloma didn't seem so bad compared to amyloidosis. But the doctors convinced me that multiple myeloma was the primary disease and to sort of ignore the amyloidosis. Before chemo, however, they checked my organs more thoroughly for damage than they would have for an multiple myeloma patient with no amyloidosis.
The doctors have basically not even mentioned the amyloidosis anymore. I'm feeling good and it's been 5 years
I wonder if you have the same as me? Perhaps I had amyloidosis and smoldering multiple myeloma, but by the time I was diagnosed I had both? Who knows.
I wanted to go to Stanford but, upon entering the lobby, they had people playing the harp. It was really nice except it seemed like they were preparing us for heaven! I'll never forget that. I ended up going to UCSF
Wow ... what a story.
I was diagnosed about 5 years ago with multiple myeloma and primary amylodosis. multiple myeloma didn't seem so bad compared to amyloidosis. But the doctors convinced me that multiple myeloma was the primary disease and to sort of ignore the amyloidosis. Before chemo, however, they checked my organs more thoroughly for damage than they would have for an multiple myeloma patient with no amyloidosis.
The doctors have basically not even mentioned the amyloidosis anymore. I'm feeling good and it's been 5 years
I wonder if you have the same as me? Perhaps I had amyloidosis and smoldering multiple myeloma, but by the time I was diagnosed I had both? Who knows.
I wanted to go to Stanford but, upon entering the lobby, they had people playing the harp. It was really nice except it seemed like they were preparing us for heaven! I'll never forget that. I ended up going to UCSF
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Hi Kim,
Good luck with your transplant Kim. I start my workup next week with high dose chemo prior to harvest and should have transplant early September. Just want to get on and get it done! Interesting about you having plantar fasciitis as I had it for about 18 months and it went away about six months prior to multiple myeloma diagnosis. Used orthotics and pain relief, but it was even painful swimming!
Looking forward to reading about your progress and hope it goes well for you.
Jen
Good luck with your transplant Kim. I start my workup next week with high dose chemo prior to harvest and should have transplant early September. Just want to get on and get it done! Interesting about you having plantar fasciitis as I had it for about 18 months and it went away about six months prior to multiple myeloma diagnosis. Used orthotics and pain relief, but it was even painful swimming!
Looking forward to reading about your progress and hope it goes well for you.
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Hello Jen and Stann,
Stann, I find it interesting they "ignored" the amylodosis. In my case, they consider it my primary disease. Did they say where you have it (in which organ)?
I feel the same way as you, Jen - anxious to get it done!
I'm here at Stanford today, having lab work and a chest X ray. I will meet with my doctor as well.
Stann, I find it interesting they "ignored" the amylodosis. In my case, they consider it my primary disease. Did they say where you have it (in which organ)?
I feel the same way as you, Jen - anxious to get it done!
I'm here at Stanford today, having lab work and a chest X ray. I will meet with my doctor as well.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Today I had my first Neupogen injection and I had my central line put in. I was heavily sedated and I don't remember a thing. Having sailed through any and all procedures so far, I was not expecting to feel this sore.
I am sure I'll feel better tomorrow. My doctor had said I could stay pretty active. The only thing she said was completely off limits was the pool, which I knew. So it looks like I'm still headed to spin class next week and hope to get a few light runs in as well.
I am excited to be getting started!
I am sure I'll feel better tomorrow. My doctor had said I could stay pretty active. The only thing she said was completely off limits was the pool, which I knew. So it looks like I'm still headed to spin class next week and hope to get a few light runs in as well.
I am excited to be getting started!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
Hi Kim! Thanks for the updates - with a photo nonetheless! Way cool! 
Have you gotten used to the central line? And how are the Neupogen injections going?
Have you gotten used to the central line? And how are the Neupogen injections going?
Re: KimT's Stem Cell Transplant (Stanford, Inpatient)
I'm happy to report that things are going well.
I was given Neupogen shots each morning at Stanford, where they took my vitals and ran a CBC. Each evening I gave myself the injection at home. I was told that if my white count was too high, I would get a call and be told not to give it. That didn't happen. I had very little pain. Occasionally, I would feel a sharp pain in my ribs and it would go away quickly. Had taken Claritin each day and I have no idea if that helped.
We had a party for me on Sunday and I was on my feet all day. They had told me to rest up for Monday but I couldn't take their advice. I decided to cut my hair short with my friends around. I will be donating 8 inches of hair to Children with Hair Loss. When it starts to fall out in the hospital, I will have it shaved then, but that is still weeks away. My friends say my hair looks great. I hate it. But it's all part of the "game" and I'm not going to complain. I have had things pretty easy.
Today was my first day of apheresis. I made my trip across the bay for the sixth day in a row. I was hooked up to the machine at 8 a.m. and finished up at 12:30. It was pretty uneventful. To ease the burden on my husband, my caregivers have offered to provide taxi service for me. Today my best friend drove me and another friend stopped by during her work day. I could have driven myself but we decided that it would be best if I didn't, in case I was on pain killers. And honestly, I am still getting used to the central line. It is no longer as sore, but I still notice it.
I just got the call that they got plenty of cells ... about 4 times what need. So I am literally off the "hook". I did it in one day! This only feeds my competitive spirit!
It will be nice not to spend 2+ hours in the car tomorrow. I am not due back now until the 14th.
Take care everyone!
I was given Neupogen shots each morning at Stanford, where they took my vitals and ran a CBC. Each evening I gave myself the injection at home. I was told that if my white count was too high, I would get a call and be told not to give it. That didn't happen. I had very little pain. Occasionally, I would feel a sharp pain in my ribs and it would go away quickly. Had taken Claritin each day and I have no idea if that helped.
We had a party for me on Sunday and I was on my feet all day. They had told me to rest up for Monday but I couldn't take their advice. I decided to cut my hair short with my friends around. I will be donating 8 inches of hair to Children with Hair Loss. When it starts to fall out in the hospital, I will have it shaved then, but that is still weeks away. My friends say my hair looks great. I hate it. But it's all part of the "game" and I'm not going to complain. I have had things pretty easy.
Today was my first day of apheresis. I made my trip across the bay for the sixth day in a row. I was hooked up to the machine at 8 a.m. and finished up at 12:30. It was pretty uneventful. To ease the burden on my husband, my caregivers have offered to provide taxi service for me. Today my best friend drove me and another friend stopped by during her work day. I could have driven myself but we decided that it would be best if I didn't, in case I was on pain killers. And honestly, I am still getting used to the central line. It is no longer as sore, but I still notice it.
I just got the call that they got plenty of cells ... about 4 times what need. So I am literally off the "hook". I did it in one day! This only feeds my competitive spirit!
It will be nice not to spend 2+ hours in the car tomorrow. I am not due back now until the 14th.
Take care everyone!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
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