7th Cycle - April 19 thru May 15
This has been a long cycle, since I'm getting infusions once a week for four weeks instead of twice a week for three weeks. I'll get two weeks off instead of one. It's been great for my leg fatigue although I'm still tired most of the time. But it was the stomach problems that caused so much problems this cycle.
My lack of appetite and pain got to the point that I emailed my onc for a change of meds for nausea. His nurse emailed back that it might be ulcers so I got an appointment with my primary care physician. Then my onc called and we decided to start on meds for ulcers (called an H. pylori pack) right away. Then my PCP took me off them except Prilosec and set up a consult for a stomach scope in a couple of weeks.
Somehow the stomach problems have now remedied themselves. The pains have gone and I've gotten about 75% of my appetite back. I don't know what happened. Maybe the antibiotics that I took for a couple of days helped. Maybe it was just a virus. Anyway I'm still taking the Prilosec so maybe that helps. I'm still really weak especially in my legs, but it's getting better. Let's hope it continues.
My lack of appetite and pain got to the point that I emailed my onc for a change of meds for nausea. His nurse emailed back that it might be ulcers so I got an appointment with my primary care physician. Then my onc called and we decided to start on meds for ulcers (called an H. pylori pack) right away. Then my PCP took me off them except Prilosec and set up a consult for a stomach scope in a couple of weeks.
Somehow the stomach problems have now remedied themselves. The pains have gone and I've gotten about 75% of my appetite back. I don't know what happened. Maybe the antibiotics that I took for a couple of days helped. Maybe it was just a virus. Anyway I'm still taking the Prilosec so maybe that helps. I'm still really weak especially in my legs, but it's getting better. Let's hope it continues.
6th Cycle - March 29 thru April 9
I really did hit the wall this cycle, with nausea and loss of appetite, and terrible fatigue and leg aches. I got through the first week ok but was not looking forward to the next week's infusions. I complained and the onc decided to cut the infusions down to one per week. As I'm writing this, I've been off for a little over a week and feeling much stronger although still fairly weak and tired in the legs. But I'm eating better and able to walk a little better too.
I had my quarterly onc appointment and found out that this Velcade treatment is having only marginal results. The MM is not progressing but it's not disappearing either. That's disappointing. It looks like we'll continue Velcade until it starts progressing again, then try something else and hope it works for a while. Maybe I'll start looking out for clinical trials. Emory Medical Center does a lot of MM work so it shouldn't be hard to find something to try when the time comes.
5th Cycle - March 8 thru 19
I thought I had hit the wall after the first infusion this cycle. Nausea, stomach pain, loss of appetite, shooting leg and foot pains, hip joint pain, insomnia, loss of energy made me think the journey wasn't going to be much fun. Fortunately they lasted only about a week and have either subsided or I've figured out a remedy. The last couple of days, in fact, have been very tolerable except for tiredness, which comes quickly. I've got one more infusion this cycle then the break week.
4th Cycle - Feb 15 thru 26
I've read in several places that the 3rd and 4th cycles are when the side effects start showing up, but so far they have been minimal. I did get a call from the infusion folks the Friday before the cycle started again on Monday that I had to get the labs again Monday morning because my platelet count was so low (platelets stop cuts from bleeding; mine was 61 with normal being above 130 I think). Fortunately it rebounded to 80-something so we went on with the infusion that afternoon.
I did get a little nausea (and another digestive problem that I won't detail) on Tuesday after the first infusion, but it didn't last. I'll pay more attention to this in the future. Hope that's all happens for a while.
They have scheduled me out through June, and told me that I'll probably start a once-a-week infusion then. News to me! I assumed twice-a-week until the numbers were (hopefully) good, then go to pills (Revlimid) after that. I don't like having to plan around infusions but there're not a lot of options I guess.
P.S. Above, I posted too soon about the side effects. The infusion was Friday, Saturday was normal, but Sunday was when it hit. Still minor, thank goodness, but enough to really get my attention. I was so weak Sunday morning that I had to go back to bed for a while after my shower. My appetite was gone and my stomach was tied in a knot. Monday and Tuesday were better, so I'm hoping things will return to normal before the next round.
I did get a little nausea (and another digestive problem that I won't detail) on Tuesday after the first infusion, but it didn't last. I'll pay more attention to this in the future. Hope that's all happens for a while.
They have scheduled me out through June, and told me that I'll probably start a once-a-week infusion then. News to me! I assumed twice-a-week until the numbers were (hopefully) good, then go to pills (Revlimid) after that. I don't like having to plan around infusions but there're not a lot of options I guess.
P.S. Above, I posted too soon about the side effects. The infusion was Friday, Saturday was normal, but Sunday was when it hit. Still minor, thank goodness, but enough to really get my attention. I was so weak Sunday morning that I had to go back to bed for a while after my shower. My appetite was gone and my stomach was tied in a knot. Monday and Tuesday were better, so I'm hoping things will return to normal before the next round.
3rd Cycle - January 25 thru February 6
And like before, this cycle was uneventful. The only thing to report is that I had a mild, one-day reaction to the H1N1 flu shot I got. Which I'm taking as a good sign that the immune system is doing something again. I had no reaction to the seasonal flu shot I got several months ago. It was probably worthless.
Even though I'm not much of a joiner, I decided to go to an MM support group meeting Saturday, and I'm glad I did. Considering that only a small percentage of patients even know about or can attend these meetings, I am really surprised that over 30 people attend. It's somehow encouraging to know that there a lot of others who are in the battle too. But best of all was hearing about a number of different treatments that are being tried. I had always assumed that there was a standard therapy and that was what I was getting. Instead, there are all kinds of combinations of drugs being tried, since everyone's disease apparently reacts differently. And a lot of side effect situations too. It was interesting and educational to hear what's going on outside my own MM world.
I have no knowledge of how my MM is responding to the recent Velcade. I can't get the lab results that really matter; this is going to have to change somehow. I'm pretty sure that my onc has blocked their release to keep me from getting discouraged but it's making me anxious instead. There's going to be a confrontation... (He'll probably win out. He usually does.)
Even though I'm not much of a joiner, I decided to go to an MM support group meeting Saturday, and I'm glad I did. Considering that only a small percentage of patients even know about or can attend these meetings, I am really surprised that over 30 people attend. It's somehow encouraging to know that there a lot of others who are in the battle too. But best of all was hearing about a number of different treatments that are being tried. I had always assumed that there was a standard therapy and that was what I was getting. Instead, there are all kinds of combinations of drugs being tried, since everyone's disease apparently reacts differently. And a lot of side effect situations too. It was interesting and educational to hear what's going on outside my own MM world.
I have no knowledge of how my MM is responding to the recent Velcade. I can't get the lab results that really matter; this is going to have to change somehow. I'm pretty sure that my onc has blocked their release to keep me from getting discouraged but it's making me anxious instead. There's going to be a confrontation... (He'll probably win out. He usually does.)
2nd Cycle - Jan 4 thru 16
Well this cycle started out with a thud. I had finished Cycle 1 on December 17 and did all the required lab testing the next day since Margie and I, along with Cathy and Kyle, were spending Christmas week in Hilton Head. So, when I went back on the next Monday, I was told it was a no-go because my labs were out of date! It turns out they want results right before the week's infusions and this didn't qualify. News to me! So this cycle was delayed a week; no big deal.
The cycle itself was completely uneventful: no side effects of any consequence. I sure hope that continues for a while. I also had an appointment with the onc, and nothing to report there either. The numbers are not getting worse, which is good news. It will take a while before some really good numbers start coming in I suppose. I can wait. We'll just keeping plugging along.
The cycle itself was completely uneventful: no side effects of any consequence. I sure hope that continues for a while. I also had an appointment with the onc, and nothing to report there either. The numbers are not getting worse, which is good news. It will take a while before some really good numbers start coming in I suppose. I can wait. We'll just keeping plugging along.
1st Cycle - December 7 thru 26
This first cycle has been completely uneventful, thank goodness. The infusion consists of a bag of saline solution and a quick shot of Velcade into the catheter; no sweat.
I looked at some other myeloma blogs and other sources and it looks like the main concern will be peripheral neuropathy, where my feet and hands will start going numb or become painful. I've got a little numbness now in my toes from the earlier Revlimid I think, but it's no problem. I've been warned to let the onc know as soon as it starts to spread so they can reduce the dosage.
It seems that the side effects of Velcade start about the third or fourth cycle as it accumulates. Maybe it won't be too rough...
Cycle 2 starts Monday.
I looked at some other myeloma blogs and other sources and it looks like the main concern will be peripheral neuropathy, where my feet and hands will start going numb or become painful. I've got a little numbness now in my toes from the earlier Revlimid I think, but it's no problem. I've been warned to let the onc know as soon as it starts to spread so they can reduce the dosage.
It seems that the side effects of Velcade start about the third or fourth cycle as it accumulates. Maybe it won't be too rough...
Cycle 2 starts Monday.
It's Ba-a-a-ck! - November 18 thru December 5
Well, crud. I had hoped (and expected) to get several years of remission out of the stem cell transplant done in May, but the monster has reared its ugly head already. When I had the 3-month followup back in August, everything looked good. But at the 6-month followup a couple of weeks ago, I was told that a couple of lab results are now out of the normal range, in essence showing that the myeloma has already started progressing. I need to start a drug therapy, and I won't be able to have another transplant using my own stem cells although there is a slight possibility of a transplant using a donor's stem cells in the distant future. I think a match is very unlikely and that procedure is pretty risky to boot. So for now I'm concentrating on the drug therapy.
So Monday I start getting a twice-weekly infusion of a drug called Velcade. I go for two weeks then get one week off for recovery. It may not technically be labeled as a chemotherapy but I'm calling it that. It has a lot of the possible side effects like chemo, except that I won't lose hair. It's called a "proteasome inhibitor" and causes cell damage. Somehow normal cells recover but cancer cells die, in theory. Actually the response rates look pretty good in a couple of studies I've read about, but the complete remission rate is pretty small. The plan is to knock back the myeloma with Velcade, then try to contain it with Revlimid. I took Revlimid for about six months prior to the transplant and the results were very good with few side effects. No one knows how long I'll be on the Velcade but it's apparent that it will at least three months and probably several more months after that.
This is really frustrating since I'm now feeling the best in almost two years, with no pains and a lot of my strength and energy coming back. I'm just hoping this stuff doesn't cause too many problems and I can travel and do some work around the house. So the fun starts Monday. I'll write up anything interesting that happens. Check back later!
So Monday I start getting a twice-weekly infusion of a drug called Velcade. I go for two weeks then get one week off for recovery. It may not technically be labeled as a chemotherapy but I'm calling it that. It has a lot of the possible side effects like chemo, except that I won't lose hair. It's called a "proteasome inhibitor" and causes cell damage. Somehow normal cells recover but cancer cells die, in theory. Actually the response rates look pretty good in a couple of studies I've read about, but the complete remission rate is pretty small. The plan is to knock back the myeloma with Velcade, then try to contain it with Revlimid. I took Revlimid for about six months prior to the transplant and the results were very good with few side effects. No one knows how long I'll be on the Velcade but it's apparent that it will at least three months and probably several more months after that.
This is really frustrating since I'm now feeling the best in almost two years, with no pains and a lot of my strength and energy coming back. I'm just hoping this stuff doesn't cause too many problems and I can travel and do some work around the house. So the fun starts Monday. I'll write up anything interesting that happens. Check back later!
Dismissed - June 29
June 29th was my "dismissal" day, the last appointment with the BMT team before being handed back to my oncologist for further management. However, I have to return in mid-August for a full round of tests, identical to all they did before they accepted me. This includes the always-fun bone marrow biopsy. I already dread it. Then I return every year for the same round of tests for the next six years.
Unless something unusual comes up, this will be the last entry. It's been an experience...
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