Dean - Keep us posted on your progress. Will be interesting to see how two guys about the same age respond to the same treatment. Also, wonder if the transplant protocol differs much by country.
AZ Mom - Two Arizona boys the same age going through the same thing. I will be honest, my wife and I were terrified the first couple months following my diagnosis. I must say, though, that this whole process has been much easier than I initially feared. They do so much to keep you comfortable and maintain as much quality of life as possible.
Speaking of which, as I mentioned previously, I was able to get enough stem cells on the first day of apheresis for two transplants, so I got a few days off. I worked three days last week and I'm working 4 days this week right up until I get my PICC line placed on Friday.
I must say that the 6 weeks in between finishing my induction therapy and starting the transplant procedures was a gift from God. I felt totally normal, worked, went on two vacations to Hawaii, played football with my boys. It was a short glimpse into what my life was like before myeloma, and what I'm fighting for it to be after my transplant. This week has been a similar glimpse. It is weird to think that in 6 days I will get my high-dose melphalan and in 8 days get my stem cells back. I feel so normal right now.
Forums
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
My husband is 43 and will be having his stem cell transplant on November 20th. We leave on Monday. Two days of testing followed by a doctors appointment on Thursday. He will get his line on Friday, high-dose chemo on Sunday, and then transplant on Monday. We are so anxious. It will be hard spending the holiday away from home, but at least we will be back for Christmas. I will be looking forward to following your journey. (My husband harvested his cells in October.)
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Chad's Autologous Stem Cell Transplant Journal
Tara - Keep us posted on your husband's transplant. Him, DeanUK, and I are all in our early to mid 40's and going through it almost simultaneously (if poor Dean ever gets a bed!).
I had my PICC line placed today. As with everything else with this transplant, it was much easier than I had feared. They gave me a small shot of lidocaine (like going to the dentist – "a little pinch") to numb the area, and then they placed the catheter in a vein in my right arm. I hadn't known that our veins do not have pain receptors, so the entire procedure was completely painless. It is amazing that they can stick a 21 inch tube from your arm into your heart and you don't feel a thing! I'm a little sore tonight, but not uncomfortable.
I've been told to stay away from crowds and the hardest part so far has been not getting fountain drinks (my Diet Pepsi) and not eating out at restaurants. Tomorrow I can't go to church and Monday I get the high-dose melphalan. Then stuff gets real.
I had my PICC line placed today. As with everything else with this transplant, it was much easier than I had feared. They gave me a small shot of lidocaine (like going to the dentist – "a little pinch") to numb the area, and then they placed the catheter in a vein in my right arm. I hadn't known that our veins do not have pain receptors, so the entire procedure was completely painless. It is amazing that they can stick a 21 inch tube from your arm into your heart and you don't feel a thing! I'm a little sore tonight, but not uncomfortable.
I've been told to stay away from crowds and the hardest part so far has been not getting fountain drinks (my Diet Pepsi) and not eating out at restaurants. Tomorrow I can't go to church and Monday I get the high-dose melphalan. Then stuff gets real.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Good luck.
You're on the way. Good luck Monday. Yes, I'm still waiting for a bed. All the best,
Dean
You're on the way. Good luck Monday. Yes, I'm still waiting for a bed. All the best,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Chad's Autologous Stem Cell Transplant Journal
Best of luck Monday Chad.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Chad's Autologous Stem Cell Transplant Journal
Thinking of you today Chad. It looks my husband will be one week behind you. His chemo will be Sunday. We are traveling today and will start testing tomorrow. Please keep us posted if you can.
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Chad's Autologous Stem Cell Transplant Journal
Chad, hope all is going well and according to plan.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Chad's Autologous Stem Cell Transplant Journal
Thanks for the responses. Dean, I prayed last night that you'd get a bed soon. We'll see if that works! Tara, I'll be thinking of you and your husband these next few days. This whole process has really been just as hard on my wife as on me, and I really think the transplant is harder on the caregiver.
I got my high-dose melphalan yesterday. It was an easy experience. I arrived at 7:00 a.m. and they took a blood test, checked some vitals, and by 10:00 a.m., they started putting the melphalan in through the PICC line. The hardest part of the whole process is keeping your mouth frozen to avoid mucositis, which I've read in other posts can be brutal. I kept moving ice around my mouth for 2 1/2 hours. Hope it works! Luckily for me, BET was showing "8 Mile", so the rap battle helped motivate me and pass the time! Otherwise, the whole high-dose chemo process was super easy. Was home by 1:00 p.m..
Here I am at Day -1, nothing to do today. I'm doing my transplant outpatient so it is very nice to be at home with my own bed/bathroom. I still feel great, going to get some work done while I still have the energy. Tomorrow is my transplant birthday (Day 0)! My mom said she wants to be there since she was there at my original birthday! I'll post more about that tomorrow.
Prayers and good mojo to Tara's husband and Dean UK, as they prepare for their transplants, and Mark and Anthony as they recover.
I got my high-dose melphalan yesterday. It was an easy experience. I arrived at 7:00 a.m. and they took a blood test, checked some vitals, and by 10:00 a.m., they started putting the melphalan in through the PICC line. The hardest part of the whole process is keeping your mouth frozen to avoid mucositis, which I've read in other posts can be brutal. I kept moving ice around my mouth for 2 1/2 hours. Hope it works! Luckily for me, BET was showing "8 Mile", so the rap battle helped motivate me and pass the time! Otherwise, the whole high-dose chemo process was super easy. Was home by 1:00 p.m..
Here I am at Day -1, nothing to do today. I'm doing my transplant outpatient so it is very nice to be at home with my own bed/bathroom. I still feel great, going to get some work done while I still have the energy. Tomorrow is my transplant birthday (Day 0)! My mom said she wants to be there since she was there at my original birthday! I'll post more about that tomorrow.
Prayers and good mojo to Tara's husband and Dean UK, as they prepare for their transplants, and Mark and Anthony as they recover.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Hi Chad and Dean,
Firstly, all the best with your transplant Chad, and I hope you get a bed soon Dean.
I am a 56-year-old female from South Africa. I was diagnosed with multiple myeloma a year ago by chance. No actual physical symptoms other than peripheral neuropathy, which my neurologist thought may be multiple sclerosis. But they detected abnormal proteins and plasma cells in bone marrow. I ended up with an amazing haematologist who started monitoring the levels. In June at 60% plasma cells I started on a tablet combination of cortisone, chemo, and thalidomide. After about 6 weeks I stopped working as a teacher and was booked off for a year.
I found that when I took the cortisone I felt really tired, shaky, and generally not great. But that only lasted a few days. The thalidomide also made me feel a bit out of it. I had 5 cycles of this treatment and then started the preparation for an autologous stem cell transplant. I had the harvest after nearly 2 weeks of twice daily Neupogen injections. They luckily got just enough for 2 transplants.
I am waiting to hear from my doctor as to when I will get the high-dose chemo and return of stem cells. It should be sometime in week of 21 November.
I will be an inpatient for the duration of this stage. Probably about 3 weeks.
Luckily I have a very good medical aid and so far they have paid for all my treatment and tests etc. I am thinking of doing a transplant journal but am bad at this type of thing so won't promise.
Firstly, all the best with your transplant Chad, and I hope you get a bed soon Dean.
I am a 56-year-old female from South Africa. I was diagnosed with multiple myeloma a year ago by chance. No actual physical symptoms other than peripheral neuropathy, which my neurologist thought may be multiple sclerosis. But they detected abnormal proteins and plasma cells in bone marrow. I ended up with an amazing haematologist who started monitoring the levels. In June at 60% plasma cells I started on a tablet combination of cortisone, chemo, and thalidomide. After about 6 weeks I stopped working as a teacher and was booked off for a year.
I found that when I took the cortisone I felt really tired, shaky, and generally not great. But that only lasted a few days. The thalidomide also made me feel a bit out of it. I had 5 cycles of this treatment and then started the preparation for an autologous stem cell transplant. I had the harvest after nearly 2 weeks of twice daily Neupogen injections. They luckily got just enough for 2 transplants.
I am waiting to hear from my doctor as to when I will get the high-dose chemo and return of stem cells. It should be sometime in week of 21 November.
I will be an inpatient for the duration of this stage. Probably about 3 weeks.
Luckily I have a very good medical aid and so far they have paid for all my treatment and tests etc. I am thinking of doing a transplant journal but am bad at this type of thing so won't promise.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Chad's Autologous Stem Cell Transplant Journal
Hi Chad
Thanks for your very kind words and thoughts. Hope you're not feeling too bad. Been thinking of you every day. I also started a forum thread on my stem cell transplant, but nothing to report as I'm in my second week of waiting for a bed. My doctor has told us to write in and complain as some patients are waiting a month as our great NHS is under so much financial pressure. Good luck.
Barbara,
Thanks for your message and good luck on your end. It's a big thing mentally to deal with, but I'm sure once the stem cell transplant is behind us all we will feel better for it. I'm more upset that my stem cell transplant is over my daughter's birthday and there's a good chance at this rate I can still be dealing with it over Christmas. No point my continuing to moan (but I do).
Good luck and keep us updated.
Thanks for your very kind words and thoughts. Hope you're not feeling too bad. Been thinking of you every day. I also started a forum thread on my stem cell transplant, but nothing to report as I'm in my second week of waiting for a bed. My doctor has told us to write in and complain as some patients are waiting a month as our great NHS is under so much financial pressure. Good luck.
Barbara,
Thanks for your message and good luck on your end. It's a big thing mentally to deal with, but I'm sure once the stem cell transplant is behind us all we will feel better for it. I'm more upset that my stem cell transplant is over my daughter's birthday and there's a good chance at this rate I can still be dealing with it over Christmas. No point my continuing to moan (but I do).
Good luck and keep us updated.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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