Week 21 (May 6-12):
This was a much more 'tolerable' week. Being the "off week" for Revlimid must have certainly helped. I avoided all the exertion and exposure to the elements by staying indoors. I am not sure if I can resume a weekly round of golf even after I go on the maintenance / reduced dosage chemo.
I also started using the stepper, just for 50 steps a day at the 70% setting, for now. I did feel tired after almost every meal and had to lie down for a while just about every time, after lunch.
The incessant wind and stormy weather is causing a lot of people in the Bay Area to suffer from the wind-whipped allergies. My wife has had a major allergy problem for almost 25 years, and she is suffering a lot more than me now. She has to walk between various buildings at work and can't completely avoid the exposure to the elements.
We have had to just about avoid all contact with our grandsons, too. The older one who goes to a daycare has brought home a nasty stomach virus that infected everyone in the family, and last weekend he had a runny nose and sneezing / coughing. I think keeping a safe distance from them and from anybody with the obvious symptoms of any cough or cold may be helping, too.
My weekly blood panel test showed no abnormal readings of the WBC's, platelets, or the eosinophils. This would be the indication that my immune system is not fighting any viral or any other kind of infection. I hope my blood test for my kappa FLC's is unaffected by these immune system responses and I get a more accurate reading. Of course, the hope is my kappa FLC reading is in the normal range, i.e., below the 19.3 threshold. I hope to get these results this afternoon. A good test result would do wonders for my confidence in this induction phase of my chemo.
All in all, a much better week and I hope the kappa FLC and the kappa / lambda ratio readings cap it off on a very positive note and give me a big morale boost.
K_Shash
Forums
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Week 22 (May 13 -19):
Better week as I get adjusted to my 'indoor only life.'
The consensus from my oncologist and another myeloma expert is I must continue this induction therapy till my kappa readings get down in the single digits, confirming a 'deep response', before I can go on a tapered down dose of the drugs and less frequent Velcade shots.
I felt 'normal' on Tuesday, the last day of the weekly cycle and did not need to lie down due to a spontaneous exhaustion. I did start using the stepper to supplement my push-ups and the other stretches. And the N95 mask really helped when I took care of some 'must-do' yard work, even in slight breeze.
K_Shash
Better week as I get adjusted to my 'indoor only life.'
The consensus from my oncologist and another myeloma expert is I must continue this induction therapy till my kappa readings get down in the single digits, confirming a 'deep response', before I can go on a tapered down dose of the drugs and less frequent Velcade shots.
I felt 'normal' on Tuesday, the last day of the weekly cycle and did not need to lie down due to a spontaneous exhaustion. I did start using the stepper to supplement my push-ups and the other stretches. And the N95 mask really helped when I took care of some 'must-do' yard work, even in slight breeze.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Week 23 (May 20 -27):
No change from the prior week, no let up in the constant 20 +/- mph wind in the Bay Area, either. We did go out to eat at a restaurant just a couple of blocks away. I did develop a slight nasal infection the next day. I have to stay indoors to feel 'normal'.
Week 24 (May 28 - June 2):
I stayed indoors through out the weekend. I had to plan a 250+ mile round trip on Monday, June 1 and I prepared well by keeping all the exposure to the weather to a minimum. I was able to manage my unavoidable business trip on Monday and did not feel any fatigue, even later in the evening after that trip. I did remember to take and use my N95 rated mask whenever I was exposed to the elements or when I was in a known dusty area.
Yesterday was the end of my 3-weeks "ON" for Revlimid and I hope to have a better week in the absence of its side effects.
Effects of the Flu of late March on my Kappa Readings:
I have been searching this forum the web for any articles about the effects of Flu on the Kappa and Lambda FLC's. The only thing I found was one report that states the Kappa can rise 25% after a Flu shot. My theory is that my Kappa FLC reading doubled in mid April due to the Flu and was back down in May to the March level after almost 9 weeks. This was in spite of the continued RVD Induction Treatment. Without the Flu, those readings could have been lot lower, by as much as by 60%. I hope that my June 8 Blood Tests show that the Kappa FLC 's are down in a single digit range and show the "Deep Response" to the Chemo, in the absence of any lingering reaction to the Flu I had in the week 14 of this Therapy.
K_Shash
No change from the prior week, no let up in the constant 20 +/- mph wind in the Bay Area, either. We did go out to eat at a restaurant just a couple of blocks away. I did develop a slight nasal infection the next day. I have to stay indoors to feel 'normal'.
Week 24 (May 28 - June 2):
I stayed indoors through out the weekend. I had to plan a 250+ mile round trip on Monday, June 1 and I prepared well by keeping all the exposure to the weather to a minimum. I was able to manage my unavoidable business trip on Monday and did not feel any fatigue, even later in the evening after that trip. I did remember to take and use my N95 rated mask whenever I was exposed to the elements or when I was in a known dusty area.
Yesterday was the end of my 3-weeks "ON" for Revlimid and I hope to have a better week in the absence of its side effects.
Effects of the Flu of late March on my Kappa Readings:
I have been searching this forum the web for any articles about the effects of Flu on the Kappa and Lambda FLC's. The only thing I found was one report that states the Kappa can rise 25% after a Flu shot. My theory is that my Kappa FLC reading doubled in mid April due to the Flu and was back down in May to the March level after almost 9 weeks. This was in spite of the continued RVD Induction Treatment. Without the Flu, those readings could have been lot lower, by as much as by 60%. I hope that my June 8 Blood Tests show that the Kappa FLC 's are down in a single digit range and show the "Deep Response" to the Chemo, in the absence of any lingering reaction to the Flu I had in the week 14 of this Therapy.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Wow, I wish I was in your good health. Please do not stop the golf and fitness, it's more important then avoiding infection. If in doubt, use hand sterilizer, and if you are in a situation like an airplane, use a mask. Don't stop now, it will be like giving up.
I did not catch mine in time and broke lots of bones, lesions everywhere. Chemo, chemo, study after study, stem cell transplant, etc. it's been 18 months, and although I believe the meds saved my life, I don't believe I'll be as active as I once was, which was pretty much like you. Problem is, I stopped!!!
Consider yourself lucky, could be the RVD will do the trick and you might not have to go further?
Good luck and hit 'm straight.
I did not catch mine in time and broke lots of bones, lesions everywhere. Chemo, chemo, study after study, stem cell transplant, etc. it's been 18 months, and although I believe the meds saved my life, I don't believe I'll be as active as I once was, which was pretty much like you. Problem is, I stopped!!!
Consider yourself lucky, could be the RVD will do the trick and you might not have to go further?
Good luck and hit 'm straight.
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: K_Shash's RVD induction therapy experience
Thanks, weatley.
No, I am not giving up on golf. I plan to return ASAP. The week before last (June 2 -9) was my off week for Revlimid and I did practice quite a bit in my backyard with the wiffle balls. I thought I would be able to play golf this weekend. However, it was not to be. Please read my next post regarding my misadventure on the treadmill last week. Also, I have a clear schedule for going soon on the Revlimid maintenance, though a few months away.
My son wanted to plan a bit of golf for Father's Day, but I chose to postpone our rounds by a few months. I saw my oncologist today and discussed how I was able to manage at least a weekly round of golf in the first few months of this induction chemo. I guess it is quite common to lose one's endurance and feel fatigued after months of this high dose chemo. In my case, I think the nasty flu I had in late March made matters a lot worse.
As an avid golfer, I completely understand your frustration. Yes, I am lucky in that my multiple myeloma was diagnosed through the routine tests and no broken bones, no organ damage and only the x-ray lesions (light but numerous ones, none too serious to prohibit physical activities like golf or tennis).
I am sure when you have recovered enough you should be able to get back into the sport any time. Who knows? You may start taking easy smoother swings and it may help your game! I sincerely hope that both will happen, you get back to the game and play well, too.
Yes, you are absolutely right, any little wind and I do use my mask. No one seems to even notice! Lately I have been using the mask just to avoid the pollen and other allergens on the course.
K_Shash
No, I am not giving up on golf. I plan to return ASAP. The week before last (June 2 -9) was my off week for Revlimid and I did practice quite a bit in my backyard with the wiffle balls. I thought I would be able to play golf this weekend. However, it was not to be. Please read my next post regarding my misadventure on the treadmill last week. Also, I have a clear schedule for going soon on the Revlimid maintenance, though a few months away.
My son wanted to plan a bit of golf for Father's Day, but I chose to postpone our rounds by a few months. I saw my oncologist today and discussed how I was able to manage at least a weekly round of golf in the first few months of this induction chemo. I guess it is quite common to lose one's endurance and feel fatigued after months of this high dose chemo. In my case, I think the nasty flu I had in late March made matters a lot worse.
As an avid golfer, I completely understand your frustration. Yes, I am lucky in that my multiple myeloma was diagnosed through the routine tests and no broken bones, no organ damage and only the x-ray lesions (light but numerous ones, none too serious to prohibit physical activities like golf or tennis).
I am sure when you have recovered enough you should be able to get back into the sport any time. Who knows? You may start taking easy smoother swings and it may help your game! I sincerely hope that both will happen, you get back to the game and play well, too.
Yes, you are absolutely right, any little wind and I do use my mask. No one seems to even notice! Lately I have been using the mask just to avoid the pollen and other allergens on the course.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Two-week update:
Week 25 (June 3 - June 10):
Well the kappa reading in the latest blood test came down only slightly. Though I was hoping for a huge drop, I had thought of the 'worst case' possibility of the reading actually going higher. Therefore, I was not overly disappointed at the 15% drop to a 20.9 level.
This was a fairly tolerable week as far as the side effects go. It was my week off of the Revlimid, and I am sure that had a lot to do with having near normal energy level on Sunday - Tuesday.
Week 26 (June 10 -17):
After my dex and Velcade and Revlimid at night starting Wednesday, I took it easy on Thursday and I seemed to be able to take short walks on Friday. However, it was very windy on Saturday. When I tried a bit of speed walk on our treadmill, I seemed to have gone past a threshold and felt very exhausted almost immediately. I ended up needing a long nap before noon and another hour and a half nap in the late afternoon AND I slept a good 8 hours at night! I felt tired almost all day Sunday and Monday, had to lie down occasionally but did not need any naps.
I did have my oncologist's appointment today and he indicated that the fatigue and tiredness was to be expected. He advised me to keep doing some light aerobic exercises, not necessarily every day. My oncologist continues to congratulate me on an 'excellent response', pointing out that my kappa FLC's are just over the upper limit of the normal range now. He advised me that I need to continue this therapy for another 4 months, as an 'insurance policy', mainly because I am not getting any ASCT. After reading first-hand accounts of others with a similar decision (no ASCT) who underwent a year-long induction therapy, a total of 10 months in my case isn't too bad and not too disappointing.
Well, I plan to only do moderate exercise this Friday and Saturday. Surprisingly, I did not get any warning such as the heaviness in the chest or heart palpitations when I went a bit too fast on the treadmill for my endurance last Friday.
K_Shash
Week 25 (June 3 - June 10):
Well the kappa reading in the latest blood test came down only slightly. Though I was hoping for a huge drop, I had thought of the 'worst case' possibility of the reading actually going higher. Therefore, I was not overly disappointed at the 15% drop to a 20.9 level.
This was a fairly tolerable week as far as the side effects go. It was my week off of the Revlimid, and I am sure that had a lot to do with having near normal energy level on Sunday - Tuesday.
Week 26 (June 10 -17):
After my dex and Velcade and Revlimid at night starting Wednesday, I took it easy on Thursday and I seemed to be able to take short walks on Friday. However, it was very windy on Saturday. When I tried a bit of speed walk on our treadmill, I seemed to have gone past a threshold and felt very exhausted almost immediately. I ended up needing a long nap before noon and another hour and a half nap in the late afternoon AND I slept a good 8 hours at night! I felt tired almost all day Sunday and Monday, had to lie down occasionally but did not need any naps.
I did have my oncologist's appointment today and he indicated that the fatigue and tiredness was to be expected. He advised me to keep doing some light aerobic exercises, not necessarily every day. My oncologist continues to congratulate me on an 'excellent response', pointing out that my kappa FLC's are just over the upper limit of the normal range now. He advised me that I need to continue this therapy for another 4 months, as an 'insurance policy', mainly because I am not getting any ASCT. After reading first-hand accounts of others with a similar decision (no ASCT) who underwent a year-long induction therapy, a total of 10 months in my case isn't too bad and not too disappointing.
Well, I plan to only do moderate exercise this Friday and Saturday. Surprisingly, I did not get any warning such as the heaviness in the chest or heart palpitations when I went a bit too fast on the treadmill for my endurance last Friday.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Well, I'm glad to hear you are not letting up on things. What I found is that idle time is contagious so don't start.
I just got held up on my treatment again. Last time it was platelets {they were too low), and this time it's white blood cells.
I am currently gong through carfilzomib [Kyprolis], dex, and Revlimid, but until my numbers go up, I'm on hold. I'm very weak lately and not sure if it's the numbers?
It's a crazy disease, and I've gone through so much over the past 20 months.
The only advise I have is, fun fun fun!!!
I just got held up on my treatment again. Last time it was platelets {they were too low), and this time it's white blood cells.
I am currently gong through carfilzomib [Kyprolis], dex, and Revlimid, but until my numbers go up, I'm on hold. I'm very weak lately and not sure if it's the numbers?
It's a crazy disease, and I've gone through so much over the past 20 months.
The only advise I have is, fun fun fun!!!
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: K_Shash's RVD induction therapy experience
Hi Gary,
I am sorry to hear that you are feeling weak and the Treatment is held up. I hope the reason your platelets or the WBC's are low is that the Chemo doses are effective against the malignant plasma cells, too.
I am on the Velcade, Revlimid and Dex and my doses seem to be well tailored for me by my Oncologist. However, the last few times I have had the Velcade rash, particularly a bad one this week with a 'burning' sensation. I do not know if the Chemo nurse did not put the air bubble at all. She had the best track record and I never had a problem in the past when she gave me these shots. I hope it was an accident and not something I said. But this burn (which I have not had since the very first Velcade shot without any air bubble) has got me quite 'down' due a constant irritation.
I am still quite upbeat this week and well enough to think of golf for Father's Day. However, we have other family activities planned and I will wait till some other weekend to play golf. Your encouragement has played a major part in my eagerness to get back on the course and I can't thank you enough for that.
Compared to your 20 month ordeal, my own 7-month (From the Day before Thanksgiving) experience with this disease has been an up and down battle. Except for my routine Physical that showed the secreted protein in the Urine test there was no other symptom of any kind. My PCP was flabbergasted when the Kappa / Lambda test showed the presence of excess Kappa FLC's. Well, I didn't have to worry about any Kidney Failure or any Dialysis! No organ damage of any kind. Therefore, I must agree that I have been lucky that the diagnosis was made and all my treatment could start before any bone or organ damage could occur. Also, my Cytogenetics showed no abnormalities and I have a IgG Kappa, "Trisomies only", standard risk Myeloma.
I was breezing through my treatment for the first three months till I had a nasty Flu and high fever. I also get allergic reactions when exposed to the great outdoors (this started only a couple of years ago and may be related to the rising Kappa levels and suppressed Immunoglobulin levels). I have been, therefore, almost afraid of getting back on a golf course, till I can get on the reduced dose Maintenance and when my Immunoglbulin levels rise to normal, I hope. I am sure that I can resume many of my outdoor activities at that time.
I totally agree about enjoying every moment, more than ever. I hope you will be back on the golf course soon, too. Yes, you have gone through so much! Broken bones, Chemo and a Transplant, too! I have chosen not to go the Transplant route but my prognosis allows that per the mSMART guide and at least per my Oncologist.
Sorry for the long winded reply but it's only out of the heart felt concern for another enthusiastic golfer trying his best to give me encouragement, in spite of his own tough battle with the same disease.
K_Shash
I am sorry to hear that you are feeling weak and the Treatment is held up. I hope the reason your platelets or the WBC's are low is that the Chemo doses are effective against the malignant plasma cells, too.
I am on the Velcade, Revlimid and Dex and my doses seem to be well tailored for me by my Oncologist. However, the last few times I have had the Velcade rash, particularly a bad one this week with a 'burning' sensation. I do not know if the Chemo nurse did not put the air bubble at all. She had the best track record and I never had a problem in the past when she gave me these shots. I hope it was an accident and not something I said. But this burn (which I have not had since the very first Velcade shot without any air bubble) has got me quite 'down' due a constant irritation.
I am still quite upbeat this week and well enough to think of golf for Father's Day. However, we have other family activities planned and I will wait till some other weekend to play golf. Your encouragement has played a major part in my eagerness to get back on the course and I can't thank you enough for that.
Compared to your 20 month ordeal, my own 7-month (From the Day before Thanksgiving) experience with this disease has been an up and down battle. Except for my routine Physical that showed the secreted protein in the Urine test there was no other symptom of any kind. My PCP was flabbergasted when the Kappa / Lambda test showed the presence of excess Kappa FLC's. Well, I didn't have to worry about any Kidney Failure or any Dialysis! No organ damage of any kind. Therefore, I must agree that I have been lucky that the diagnosis was made and all my treatment could start before any bone or organ damage could occur. Also, my Cytogenetics showed no abnormalities and I have a IgG Kappa, "Trisomies only", standard risk Myeloma.
I was breezing through my treatment for the first three months till I had a nasty Flu and high fever. I also get allergic reactions when exposed to the great outdoors (this started only a couple of years ago and may be related to the rising Kappa levels and suppressed Immunoglobulin levels). I have been, therefore, almost afraid of getting back on a golf course, till I can get on the reduced dose Maintenance and when my Immunoglbulin levels rise to normal, I hope. I am sure that I can resume many of my outdoor activities at that time.
I totally agree about enjoying every moment, more than ever. I hope you will be back on the golf course soon, too. Yes, you have gone through so much! Broken bones, Chemo and a Transplant, too! I have chosen not to go the Transplant route but my prognosis allows that per the mSMART guide and at least per my Oncologist.
Sorry for the long winded reply but it's only out of the heart felt concern for another enthusiastic golfer trying his best to give me encouragement, in spite of his own tough battle with the same disease.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Week 27: (June 18 -July 1)
Hello all, particularly to those few that may still be reading this personal blog.
Fairly uneventful last week, not counting the excitement of our 2-year-old grandson spending a few hours with us on last Saturday. I have been able to manage quite a few activities, mainly helping our son as his agent purchase a home. A lot of climbing steps and walking around any home our son family seem serious about.
I had a nice golf swing practice in the backyard with the wiffle balls two weeks ago. I developed a nasty pain just above the left hip joint a couple of days after. It was pretty bad when I sat at my desk and generally unnoticeable when I laid down in bed. It was bad enough on the 5th day that I was trying to make an appointment with my PCP for X-ray of the area, wondering if any bone lesion was getting worse. However, I had started rubbing the Vicks Vaporub on that are for a few days and it also dawned on me that this may have been self inflicted. By Wednesday of last week, the pain had subsided substantially and I canceled my plans to see my PCP.
This episode is a good example of how the constant concern about the side effects of this RVD chemo can add to the anxiety level and make one wonder if anything out of the ordinary is a cause for alarm.
For the record, three things that are helping me:
Saturday Treadmill: do not exceed 2.5 mph
Golf swings: do not try to stretch like the pros when you complete the swing. Use a N95 mask in your own yard. However, hard to breathe through this mask so I have to take my time taking these practice swings
Backyard / garden work: N95 close fitting mask helps against the allergens in the wind. However, breathing through this heavy duty mask is difficult. I cannot do any fast walking or other physical activity that can cause heavy breathing.
Well, I started my "off" week for the Revlimid. I expect a little more energy level for the next 5 or 6 days, particularly after the Velcade drowsiness wears off on Saturday. Then all eyes on the Monday broader spectrum blood test that would give us the Kappa and Lambda! Oh, how I wish I can attain a single-digit kappa! Just over 3 months of this induction phase and now I am mentally prepared for that.
I am hoping that the 10 cycles have been worth the effort and I can see a long-time CR on maintenance. It should work out well and let me start playing a couple of rounds of golf a week by late October - mid November, when the induction therapy (ending at the end of September) effects would have all but subsided.
K_Shash
Hello all, particularly to those few that may still be reading this personal blog.
Fairly uneventful last week, not counting the excitement of our 2-year-old grandson spending a few hours with us on last Saturday. I have been able to manage quite a few activities, mainly helping our son as his agent purchase a home. A lot of climbing steps and walking around any home our son family seem serious about.
I had a nice golf swing practice in the backyard with the wiffle balls two weeks ago. I developed a nasty pain just above the left hip joint a couple of days after. It was pretty bad when I sat at my desk and generally unnoticeable when I laid down in bed. It was bad enough on the 5th day that I was trying to make an appointment with my PCP for X-ray of the area, wondering if any bone lesion was getting worse. However, I had started rubbing the Vicks Vaporub on that are for a few days and it also dawned on me that this may have been self inflicted. By Wednesday of last week, the pain had subsided substantially and I canceled my plans to see my PCP.
This episode is a good example of how the constant concern about the side effects of this RVD chemo can add to the anxiety level and make one wonder if anything out of the ordinary is a cause for alarm.
For the record, three things that are helping me:
Saturday Treadmill: do not exceed 2.5 mph
Golf swings: do not try to stretch like the pros when you complete the swing. Use a N95 mask in your own yard. However, hard to breathe through this mask so I have to take my time taking these practice swings
Backyard / garden work: N95 close fitting mask helps against the allergens in the wind. However, breathing through this heavy duty mask is difficult. I cannot do any fast walking or other physical activity that can cause heavy breathing.
Well, I started my "off" week for the Revlimid. I expect a little more energy level for the next 5 or 6 days, particularly after the Velcade drowsiness wears off on Saturday. Then all eyes on the Monday broader spectrum blood test that would give us the Kappa and Lambda! Oh, how I wish I can attain a single-digit kappa! Just over 3 months of this induction phase and now I am mentally prepared for that.
I am hoping that the 10 cycles have been worth the effort and I can see a long-time CR on maintenance. It should work out well and let me start playing a couple of rounds of golf a week by late October - mid November, when the induction therapy (ending at the end of September) effects would have all but subsided.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Hi K_Shash,
Thanks for the update. It sounds like things have been going well for you overall recently. I'm glad that your hip pain was better. I hope that trend is continuing. I certainly can relate to what you said about any unusual pain or health-related change making you wonder if it is due to your chemo treatment, or to the multiple myeloma itself.
Best wishes to you for good news from your upcoming lab tests!
Mike
Thanks for the update. It sounds like things have been going well for you overall recently. I'm glad that your hip pain was better. I hope that trend is continuing. I certainly can relate to what you said about any unusual pain or health-related change making you wonder if it is due to your chemo treatment, or to the multiple myeloma itself.
Best wishes to you for good news from your upcoming lab tests!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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