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.
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