Day +15
I meant to post this yesterday but my tablet was acting up preventing me from finishing my post. A nap was calling after that, so here I am the next day!
Monday, Day +13, was another day moving in the right direction. My white blood cell count went up to 0.9 and all other factors rose as well. My appetite remained strong, and my body seemed to be recovering from the process.
Thursday, Day +14 I hit a milepost with my NTAuto days point reaching 0.55. My END count was 1.4 and all my other numbers were up about the same amount toward normal levels. Looking at the numbers versus the norms, my current numbers are 1/3 to 1/2 of the minimum normal amounts. The doctor was very pleased with my process and I was given a day off from office visits the next day.
Wednesday, Day +15, my first day without a clinic visit since October 6; an 18-day streak. It's been a good day, my eating is still improving, and my condition is continuing to get better. I discontinued the anti-fungal and antibiotic pills yesterday so those medicines are clearing my system, leaving just Prilosec (omeprazole) and anti-shingles pills to take daily. I went for a brisk walk this afternoon, what I consider the first step in a road that leads to Ironman Chattanooga in 2020.
I'm hoping that my release from the treatment program will be next week, somewhere around Day +21, as we are very homesick these days. It's worsening as my condition improves and I stop focusing on feeling bad and start focusing on recovery. Otherwise, everything is going well and hopefully my numbers will continue to normalize over the next few days.
On a side note, my hair loss stopped midway in that process. It would be a problem if I still had hair, but I shaved my head before we came to Nashville, so it's no big deal.
Forums
-
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
Day +17
On my second day off from clinic visits today, with the end of this phase in sight.
My numbers are continuing to rise in all categories, including those related to nutrition. White blood cell is up to 2.5, red blood cells are up to 3.09, and protein is up to 6.1, right at the low end of the normal range.
I had a harder day yesterday after my clinic visit due to constipation problems. The clinic doesn't want me to use any over the counter pain medicines, as they could hide a fever, and they prescribed Oxycontin (oxycodone) 5 mg as an alternative. I have pretty bad peripheral neuropathy from my earlier myeloma treatment, so pain management is always a concern. I cannot use the usual drug prescription for neuropathic pain, it causes even more intense pain and makes my feet swell up like I 'm having an allergic reaction. I have used the Oxycontin a few times, but the resulting constipation is problematic. Yesterday was the worst I have ever experienced, so bad that I am saying goodbye to the Oxycontin and going back to ibuprofen. At this stage, I don't think the risk of hiding a fever is worse than the problems associated with constipation.
My doctor also set my check out schedule yesterday. My last clinic visit will be Saturday, my chest line comes out Friday morning, and I only have 3 clinic visits between today and Friday's final blood tests. It will be really, really nice to be home again! I also negotiated that the Day +60 tests will be conducted at my home clinic, a 20-minute drive, versus a 2-hour trip to Nashville. The next and only trip to the transplant center will be on Day +100, which will close out the contract for my stem cell transplant procedure.
On my second day off from clinic visits today, with the end of this phase in sight.
My numbers are continuing to rise in all categories, including those related to nutrition. White blood cell is up to 2.5, red blood cells are up to 3.09, and protein is up to 6.1, right at the low end of the normal range.
I had a harder day yesterday after my clinic visit due to constipation problems. The clinic doesn't want me to use any over the counter pain medicines, as they could hide a fever, and they prescribed Oxycontin (oxycodone) 5 mg as an alternative. I have pretty bad peripheral neuropathy from my earlier myeloma treatment, so pain management is always a concern. I cannot use the usual drug prescription for neuropathic pain, it causes even more intense pain and makes my feet swell up like I 'm having an allergic reaction. I have used the Oxycontin a few times, but the resulting constipation is problematic. Yesterday was the worst I have ever experienced, so bad that I am saying goodbye to the Oxycontin and going back to ibuprofen. At this stage, I don't think the risk of hiding a fever is worse than the problems associated with constipation.
My doctor also set my check out schedule yesterday. My last clinic visit will be Saturday, my chest line comes out Friday morning, and I only have 3 clinic visits between today and Friday's final blood tests. It will be really, really nice to be home again! I also negotiated that the Day +60 tests will be conducted at my home clinic, a 20-minute drive, versus a 2-hour trip to Nashville. The next and only trip to the transplant center will be on Day +100, which will close out the contract for my stem cell transplant procedure.
-
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
Day +19
My numbers are continuing to increase while my white blood cell count plateaued at 2.5 at yesterday's clinic visit. That is fairly normal according to my doctor: increases after a stem cell transplant are not a perfect upward arc, they can plateau for a time or even decline before rising again.
I continue to be pretty weak, which is understandable given the ordeal I put my body through. I have been walking every day and will begin "soup can" weight training today. It took months to lose the fitness I had at the beginning of my treatments, it will take even more months (at 56 years old), to get back to where I could run 100 miles in one month.
I saw several people at the clinic yesterday who were just starting the initial chemo or the stem cell transplant. It seems like months have passed since I was at those phases, but it was less than 3 weeks ago. Time passes strangely during a stem cell transplant, being away from home, the foreign environment, the effects of the process and the drugs, the enforced confinement, all make the time pass differently. Hopefully some normalcy will return once we return home this Saturday (God willing and no fevers arise!).
My numbers are continuing to increase while my white blood cell count plateaued at 2.5 at yesterday's clinic visit. That is fairly normal according to my doctor: increases after a stem cell transplant are not a perfect upward arc, they can plateau for a time or even decline before rising again.
I continue to be pretty weak, which is understandable given the ordeal I put my body through. I have been walking every day and will begin "soup can" weight training today. It took months to lose the fitness I had at the beginning of my treatments, it will take even more months (at 56 years old), to get back to where I could run 100 miles in one month.
I saw several people at the clinic yesterday who were just starting the initial chemo or the stem cell transplant. It seems like months have passed since I was at those phases, but it was less than 3 weeks ago. Time passes strangely during a stem cell transplant, being away from home, the foreign environment, the effects of the process and the drugs, the enforced confinement, all make the time pass differently. Hopefully some normalcy will return once we return home this Saturday (God willing and no fevers arise!).
-
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
Day +23
One day before my release to go home.
One last clinic visit and set of blood tests before my check out on Friday from the transplant center. Most of my numbers have risen to within the normal range now. My white blood count is up to 4.0 and my red blood cell count and platelets are also within the normal range now.
It is nice to be able get around with a relatively normal walk now rather than the "chemo shuffle" I walked with for the preceding couple of weeks. Still not as fast as I was before I was diagnosed with multiple myeloma, but it's a work in process, I walked more today, with a hill to climb, than I have since before arriving here for my transplant procedure.
Only a couple of posts left for this thread now, check out is tomorrow, and the line in my chest will be removed tomorrow at 1 p.m. After that, all we have to do is pack up our stuff and head home on Saturday morning. We decided that we didn't want to leave Friday afternoon because Nashville weekday traffic is a bit more than I want to deal with after getting a tube pulled out of my aorta!
One day before my release to go home.
One last clinic visit and set of blood tests before my check out on Friday from the transplant center. Most of my numbers have risen to within the normal range now. My white blood count is up to 4.0 and my red blood cell count and platelets are also within the normal range now.
It is nice to be able get around with a relatively normal walk now rather than the "chemo shuffle" I walked with for the preceding couple of weeks. Still not as fast as I was before I was diagnosed with multiple myeloma, but it's a work in process, I walked more today, with a hill to climb, than I have since before arriving here for my transplant procedure.
Only a couple of posts left for this thread now, check out is tomorrow, and the line in my chest will be removed tomorrow at 1 p.m. After that, all we have to do is pack up our stuff and head home on Saturday morning. We decided that we didn't want to leave Friday afternoon because Nashville weekday traffic is a bit more than I want to deal with after getting a tube pulled out of my aorta!
-
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
Day +25
Home!
Yesterday I went in to the transplant center for my final tests and to have my line / catheter removed. Unfortunately, it was also the second day for a new software system for the entire hospital, with all of the problems many of us can imagine. I used to be a team lead Contract Specialist for IT systems, so I am aware of the pitfalls a new software system can introduce. The cancer center seemed to be facing all of those yesterday. An example: no one could print anything, as the software seemed to not even have a print function. Labels for blood vials, lab results, schedules, and everything else were all not available, and even the tech reps and superusers were unable to find a solution. It was frustrating for both patients and medical staff, and delayed every process as far as I could see.
As a result of the delays, my wife and I spent the whole day at the clinic. The blood tests that normally took an hour were not available for 3 hours, and some test results were not available when we left after 3 p.m. The numbers we did get were good enough for my release, so we were happy with that.
Getting my line out was scary, I was under anesthesia when it was put in, but the removal was under a local lidocaine injection. It turned out that the only pain was the lidocaine injection; the actual removal was completely painless. The wound that was left was significant, and somewhat painful after the lidocaine wore off. It bled for a while after the line was removed, and it continued to bleed small amounts into the night. It was stable today though. Tomorrow the bandage will come off and be replaced with a band-aid. It will be nice to sleep without restrictions for the first time in months, not to mention being able to shower without a big chunk of plastic cling wrap taped to my chest!
We arrived at home this morning, and it was a bit surreal after being away for a month. A good surreal though; we missed our cats, furniture, appliances, and house, so getting back to them was a pleasure!
It's hard to believe my stem cell transplant is in the rear view mirror. Now it's the 60-day and 100-day tests to look forward to, and likely maintenance therapy after that. Hopefully this thread will help others in going through their transplant procedures, or at least help them through the various phase of the procedure. Good luck to those who have yet to reach that point in their multiple myeloma journey, and now I can claim membership in the second birthday club!
Home!
Yesterday I went in to the transplant center for my final tests and to have my line / catheter removed. Unfortunately, it was also the second day for a new software system for the entire hospital, with all of the problems many of us can imagine. I used to be a team lead Contract Specialist for IT systems, so I am aware of the pitfalls a new software system can introduce. The cancer center seemed to be facing all of those yesterday. An example: no one could print anything, as the software seemed to not even have a print function. Labels for blood vials, lab results, schedules, and everything else were all not available, and even the tech reps and superusers were unable to find a solution. It was frustrating for both patients and medical staff, and delayed every process as far as I could see.
As a result of the delays, my wife and I spent the whole day at the clinic. The blood tests that normally took an hour were not available for 3 hours, and some test results were not available when we left after 3 p.m. The numbers we did get were good enough for my release, so we were happy with that.
Getting my line out was scary, I was under anesthesia when it was put in, but the removal was under a local lidocaine injection. It turned out that the only pain was the lidocaine injection; the actual removal was completely painless. The wound that was left was significant, and somewhat painful after the lidocaine wore off. It bled for a while after the line was removed, and it continued to bleed small amounts into the night. It was stable today though. Tomorrow the bandage will come off and be replaced with a band-aid. It will be nice to sleep without restrictions for the first time in months, not to mention being able to shower without a big chunk of plastic cling wrap taped to my chest!
We arrived at home this morning, and it was a bit surreal after being away for a month. A good surreal though; we missed our cats, furniture, appliances, and house, so getting back to them was a pleasure!
It's hard to believe my stem cell transplant is in the rear view mirror. Now it's the 60-day and 100-day tests to look forward to, and likely maintenance therapy after that. Hopefully this thread will help others in going through their transplant procedures, or at least help them through the various phase of the procedure. Good luck to those who have yet to reach that point in their multiple myeloma journey, and now I can claim membership in the second birthday club!
-
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
It's been a few weeks since my release and things are going well at home as I prepare for my first round of post transplant evaluation tests next week. I am not a fan of getting a hole punched into my hip bone, so I am not looking forward to the appointment!
My strength is slowly coming back these days. My afternoon walks are up to 2 miles now, and getting faster day by day. With any luck I will be able to start running again in January after day 100 and I can get my peripheral neuropathy under control.
I've only been out (other than my walks in the neighborhood), a couple of times, so cabin fever is setting in. Not being able to get out, eat at restaurants, shop and go to local events is not fun, but another price to be paid in the treatment process. Another month and a half to go, and then hopefully I will be able to start outside activities again.
My strength is slowly coming back these days. My afternoon walks are up to 2 miles now, and getting faster day by day. With any luck I will be able to start running again in January after day 100 and I can get my peripheral neuropathy under control.
I've only been out (other than my walks in the neighborhood), a couple of times, so cabin fever is setting in. Not being able to get out, eat at restaurants, shop and go to local events is not fun, but another price to be paid in the treatment process. Another month and a half to go, and then hopefully I will be able to start outside activities again.
-
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
Congratulations Doug. Sounds like you are tackling your recovery and the isolation that comes with it well. I am waiting for a date for admission for my second transplant. I will write as it takes place.
In the meantime, I have been feeling great since my first transplant (which took place in August). Living with cancer is hard, but can and will be done. Signing on to a second round of treatment of a second transplant while feeling good has been difficult, especially with the holidays. I assume Santa will visit the hospital. Following my auto in August, my biopsy showed complete stringent remission. I am told i will be put on Revlimid following my recovery from the second transplant.
Doug, blessing for continual healing. Happy Holidays.
In the meantime, I have been feeling great since my first transplant (which took place in August). Living with cancer is hard, but can and will be done. Signing on to a second round of treatment of a second transplant while feeling good has been difficult, especially with the holidays. I assume Santa will visit the hospital. Following my auto in August, my biopsy showed complete stringent remission. I am told i will be put on Revlimid following my recovery from the second transplant.
Doug, blessing for continual healing. Happy Holidays.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
27 posts
• Page 3 of 3 • 1, 2, 3
Return to Treatments & Side Effects