Good to hear from you, as always, Mike.
This is my "off" week for Revlimid, and my cramps seem to be on the first couple of days of dex and Velcade. Therefore, I am assuming it's the dex. Fortunately, I still have a supply of the magnesium from the days when I used to play two rounds of golf on a hilly course, all walking and used to get cramps every so often. Do you have any experience with glucosamine? I switched to that some time ago after a very accomplished athlete told me to try it. It seemed to have helped my knee joint pain and I do realize that that was for something else, altogether. I still take two tablets of that every day.
Of course, I will start taking the magnesium, too. This symptom lasts for three days after my dex / Velcade. I had no such cramps, just soreness all over, after my golf last Saturday. Fortunately, I have not come to a "lock up" situation, yet. However, I would certainly try the vinegar IF I get to that, or if I get any serious cramps again.
I just checked. I was taking magnesium citrate with 250 mg of magnesium. I will use that for this week and see if I feel any difference. The latest blood test showed that my calcium has dropped a bit, too. I started taking my vitamin D supplement as of this morning, too.
Also my cramps were a bit 'self inflicted'. I did not want to do any major yard work during the first two days after the dex / Velcade. So I decided to work on some small equipment and light work on a car. That involved a lot of gripping and handling of tiny wrenches and bending in difficult postures which may have caused some cramps in my fingers. The toes all twisting and cramping should not have anything to do with that, though. Luckily I could just walk off those cramps.
Thanks, Mike, for the helpful hints and for the encouragement. I just scanned through the threads you referred me to. Gatorade or any acidic drink seems to help (the vinegar being much stronger) or a shot of mustard as the doctor mentioned. My acid reflux would be a problem, though. However, no harm in trying and finding out. I can always take my Zantac a little after the cramps go away.
Just a couple of side notes (that I should have added to my last post):
I had a very minor tingling only once or twice in the second cycle, I think. It has never returned. That, too, was minor and felt like waking up after sleeping on an arm and finding it feels like it has gone to 'sleep'.
Similarly, I had a minor Revlimid rash, only once. That seemed to have been well taken care of by a couple of days of Benadryl and by stopping the last two (out of 21) Revlimid pills. That was at the end of the third cycle. No rash this time, in the 4th cycle I completed a week ago. I suspect there are so many interactions of these drugs with what we eat, drink and also with the allergens and viruses that are ever present all around us.
All in all, the side effects of this induction phase have been minor and I have been able to carry out my business activities quite well.
Of course, my 12 weeks' experience of this induction phase pales in comparison with your myeloma journey that includes the whole stem cell transplant and now maintenance.
I sincerely appreciate your letting us have the benefit of your research and of your 'first hand' experience.
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 12:
Quick update:
I had my 13th Velcade shot and the End of the Third 4-week Cycle Oncologist's appointment yesterday. My Oncologist considers the drop of my Kappa FLC's to 24.8 (from the original 1073, 127 after the first Cycle and 48.2 after the Second Cycle) to be 'excellent'. However, I will still need to complete Three more 4-week Cycles, starting yesterday. And I thought that my Kappa reading is so close to normal( 19.4 high) that this fourth cycle will bring that Kappa reading to "Normal" and I would need only one more Consolidation Cycle. No harm in another cycle of Velcade shots and burying the beast. The end of the Velcade will be the main difference in the Maintenance Phase and they do not seem to cause any noticeable Side Effects for me.
We went over most of my side effects.
'Once only' episodes of:
Tingling in the fingers (toward the end of the First Cycle)
Revlimid Rash (toward the end of the 3-week 'On" of the Second Cycle) and
An Eyelid Cyst (middle of the Third Cycle)
Most other side effects such as Sleeping problem on the first night of Dex, cramps, high sensitivity to Allergies, Lack of stamina for long brisk walks etc. can be attributed to the Dex. I also had a couple of week-long hay fever bouts. My Oncologist advised me that I cannot really avoid allergens with the Patient's face masks and some of this can be attributed to the lower HgB. But he agreed that I can now reduce my weekly Dex to 16mg, starting next Wednesday. I hope this helps me regain my stamina a lot quicker after the Wednesday morning Dex dose, during the remaining weeks of this Induction / Consolidation phase. He had no problem with re-starting my Magnesium and Calcium supplements. It may be the Magnesium is already helping since I did not have any cramps last night! This was a great improvement over being woken up last Wednesday night with Cramps in my calves and having to stretch and walk around.
Thanks mikeb for your input.
I am glad I would not be needing any Bone Marrow Biopsy to confirm a Stringent response. The Kappa reading would be the main 'marker', I assume. Also, it is unlikely that my Skeletal X-ray would show any immediate improvement in the various legions noted in December 2014.
I seem to be feeling a lot more energetic on this 'day after 20 mg Dex', already. I hope this week is uneventful, for the Side Effects of this Chemo. I hope I can break the vicious cycle of not being able to sleep over 4 or 5 hours and having the breathlessness after minimal exercise or after any strenuous activity. I need to walk at least 2 miles at a brisk pace before I seem to get my daily dose of physical activity and be able to sleep over 6 hours. Less sleep, less stamina!
K_Shash
Quick update:
I had my 13th Velcade shot and the End of the Third 4-week Cycle Oncologist's appointment yesterday. My Oncologist considers the drop of my Kappa FLC's to 24.8 (from the original 1073, 127 after the first Cycle and 48.2 after the Second Cycle) to be 'excellent'. However, I will still need to complete Three more 4-week Cycles, starting yesterday. And I thought that my Kappa reading is so close to normal( 19.4 high) that this fourth cycle will bring that Kappa reading to "Normal" and I would need only one more Consolidation Cycle. No harm in another cycle of Velcade shots and burying the beast. The end of the Velcade will be the main difference in the Maintenance Phase and they do not seem to cause any noticeable Side Effects for me.
We went over most of my side effects.
'Once only' episodes of:
Tingling in the fingers (toward the end of the First Cycle)
Revlimid Rash (toward the end of the 3-week 'On" of the Second Cycle) and
An Eyelid Cyst (middle of the Third Cycle)
Most other side effects such as Sleeping problem on the first night of Dex, cramps, high sensitivity to Allergies, Lack of stamina for long brisk walks etc. can be attributed to the Dex. I also had a couple of week-long hay fever bouts. My Oncologist advised me that I cannot really avoid allergens with the Patient's face masks and some of this can be attributed to the lower HgB. But he agreed that I can now reduce my weekly Dex to 16mg, starting next Wednesday. I hope this helps me regain my stamina a lot quicker after the Wednesday morning Dex dose, during the remaining weeks of this Induction / Consolidation phase. He had no problem with re-starting my Magnesium and Calcium supplements. It may be the Magnesium is already helping since I did not have any cramps last night! This was a great improvement over being woken up last Wednesday night with Cramps in my calves and having to stretch and walk around.
Thanks mikeb for your input.
I am glad I would not be needing any Bone Marrow Biopsy to confirm a Stringent response. The Kappa reading would be the main 'marker', I assume. Also, it is unlikely that my Skeletal X-ray would show any immediate improvement in the various legions noted in December 2014.
I seem to be feeling a lot more energetic on this 'day after 20 mg Dex', already. I hope this week is uneventful, for the Side Effects of this Chemo. I hope I can break the vicious cycle of not being able to sleep over 4 or 5 hours and having the breathlessness after minimal exercise or after any strenuous activity. I need to walk at least 2 miles at a brisk pace before I seem to get my daily dose of physical activity and be able to sleep over 6 hours. Less sleep, less stamina!
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 13:
Nothing much has changed since the last week, except I definitely feel an increasing and longer lasting "fatigue factor". I had to make a leisurely 240 mile business related round trip and I ran a few errands on the way back home. It was tiring and I could feel the breathlessness. A half hour 'lie down' to watch some Motorweek seemed to help.
I am hoping that the 'cumulative effect' of this chemo is not a precursor of any more side effects, since I have 11 more weeks of this treatment to endure. I hope the reduced weekly dex dose (16 mg) would help a little this week.
An interesting discovery is that my hair and beard turn noticeably white on the second and third day after the dex and Velcade but surprisingly regain the original color on the 4th day. Something my family noticed and I am taking some selfies to document and confirm it.
K_Shash
Nothing much has changed since the last week, except I definitely feel an increasing and longer lasting "fatigue factor". I had to make a leisurely 240 mile business related round trip and I ran a few errands on the way back home. It was tiring and I could feel the breathlessness. A half hour 'lie down' to watch some Motorweek seemed to help.
I am hoping that the 'cumulative effect' of this chemo is not a precursor of any more side effects, since I have 11 more weeks of this treatment to endure. I hope the reduced weekly dex dose (16 mg) would help a little this week.
An interesting discovery is that my hair and beard turn noticeably white on the second and third day after the dex and Velcade but surprisingly regain the original color on the 4th day. Something my family noticed and I am taking some selfies to document and confirm it.
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
Although it is not mentioned prominently, shortness of breath is indeed a possible chemo side effect. I had it during many of my 22 weeks of induction chemo. But I wouldn't call it "cumulative", and mine went away when I stopped the chemo and got ready for my transplant. Hope yours goes away, too.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: K_Shash's RVD induction therapy experience
Thanks, Mr. Dana.
I had a pretty rough week and didn't get to thank you earlier.
Week 14:
What a difference a week makes!
My hopes of breezing through the induction chemo were dealt a nasty blow after my sore throat became worse on Sunday night. I emailed my oncologist on Monday morning and I was told that I should be able to continue my chemo IF I felt 'up to it'. My preference would be to continue the chemo without interruption.
However, Monday night I developed a pretty high fever that beset me right around 5:00 p.m. and rose to 101.3 degrees. When I reported this to the oncology dept. early in the morning yesterday, I was advised NOT to take any fever or cough suppressants and come to the ER IF my fever reached 101.5 degrees. I felt fine all day yesterday, but almost like clockwork my temperature started rising, spiking after 4:30 p.m. and pretty soon it was around 102 degrees. I had no choice but to plan a visit to the ER.
First time ever in the ER:
My wife drove me to the ER 30 miles away and my temperature had reached 102.8 degrees. More needles, IV fluids and IV antibiotics, chest x-ray, EKG, blood tests, and about 3 hours later, it was determined that there is no problem with the lungs, all other tests were fine, WBC count had risen to 7 (as I recall) and given prescription for oral penicillin and Tamiflu. That was to take care of any viral or bacterial Infection. The cultures from that blood test won't develop for a day or so, I guess.
I was told that from now on it would be OK to treat the symptoms, take Tylenol, cough suppressants or other 'over the counter' cold and flu medication. The chemo would be postponed by a week and I hope that does not affect its efficacy. My main myeloma indicator, the kappa (light chains, free) was 24.8 more than two weeks ago and should be well below the 19.3 threshold for the "normal" range by now.
We got home at midnight, and I had a good night's sleep. What a way to end a week. No Velcade today and stopped my Revlimid from yesterday, too.
A common cold can be such a major concern for us myeloma patients! I will have to try harder to avoid any crowded places and sick friends and relatives.
K_Shash
I had a pretty rough week and didn't get to thank you earlier.
Week 14:
What a difference a week makes!
My hopes of breezing through the induction chemo were dealt a nasty blow after my sore throat became worse on Sunday night. I emailed my oncologist on Monday morning and I was told that I should be able to continue my chemo IF I felt 'up to it'. My preference would be to continue the chemo without interruption.
However, Monday night I developed a pretty high fever that beset me right around 5:00 p.m. and rose to 101.3 degrees. When I reported this to the oncology dept. early in the morning yesterday, I was advised NOT to take any fever or cough suppressants and come to the ER IF my fever reached 101.5 degrees. I felt fine all day yesterday, but almost like clockwork my temperature started rising, spiking after 4:30 p.m. and pretty soon it was around 102 degrees. I had no choice but to plan a visit to the ER.
First time ever in the ER:
My wife drove me to the ER 30 miles away and my temperature had reached 102.8 degrees. More needles, IV fluids and IV antibiotics, chest x-ray, EKG, blood tests, and about 3 hours later, it was determined that there is no problem with the lungs, all other tests were fine, WBC count had risen to 7 (as I recall) and given prescription for oral penicillin and Tamiflu. That was to take care of any viral or bacterial Infection. The cultures from that blood test won't develop for a day or so, I guess.
I was told that from now on it would be OK to treat the symptoms, take Tylenol, cough suppressants or other 'over the counter' cold and flu medication. The chemo would be postponed by a week and I hope that does not affect its efficacy. My main myeloma indicator, the kappa (light chains, free) was 24.8 more than two weeks ago and should be well below the 19.3 threshold for the "normal" range by now.
We got home at midnight, and I had a good night's sleep. What a way to end a week. No Velcade today and stopped my Revlimid from yesterday, too.
A common cold can be such a major concern for us myeloma patients! I will have to try harder to avoid any crowded places and sick friends and relatives.
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 Mr K_Shash,
Just read your post. I hope you feel better after the ER folks have taken care of your condition with the right medicines.
Take care. Drinking lots of warm fluids.
Hope you feel better soon.
Just read your post. I hope you feel better after the ER folks have taken care of your condition with the right medicines.
Take care. Drinking lots of warm fluids.
Hope you feel better soon.
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Cmouli - Name: Cmouli
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Nov 4, 2014
- Age at diagnosis: 78
Re: K_Shash's RVD induction therapy experience
Week 15:
The Lost week .... a week without Chemo:
The Lab called early in the week to confirm that I had NO Strep Throat. I did not have any high fever since that visit to the ER but continued to get a sub-99 spike in the evenings for four days, i.e. till Saturday night. That was accompanied by bouts of dry cough.
The helpful Chemo Charge Nurse had advised me not to take any more Benadryl because of its 'drying up the sinuses and the throat' effect but instead to take Musinex. This helped the throat and cough.
Finally no evening sub-99 degree fever as of Sunday night and my Oncologist had advised me that I could stop the Penicillin yesterday and re-start the Chemo from tonight, subject to my Blood Test Results yesterday. The Penicillin seemed to have caused a "sawdust" diarrhea but did not affect my appetite. I stopped the Penicillin yesterday and everything is returning to normal.
The Blood Tests were in the 'normal' range (for the 'Chemo weeks') and I will be able to proceed with the Chemo, starting with the Revlimid tonight.
I don't know if I just had a nasty Viral Infection with a 101+ degree fever last Monday and the 102+ degree spike on Tuesday night, that needed the Tamiflu. I wonder if the marginalized immunity played a part in the 'high fever reaction' to a virus. I may never know. However, no more long play days with the grand kids, just can't take any chances.. like the cat that sat on a hot plate! But only 10 more weeks of this Induction Chemo.
The Lost week .... a week without Chemo:
The Lab called early in the week to confirm that I had NO Strep Throat. I did not have any high fever since that visit to the ER but continued to get a sub-99 spike in the evenings for four days, i.e. till Saturday night. That was accompanied by bouts of dry cough.
The helpful Chemo Charge Nurse had advised me not to take any more Benadryl because of its 'drying up the sinuses and the throat' effect but instead to take Musinex. This helped the throat and cough.
Finally no evening sub-99 degree fever as of Sunday night and my Oncologist had advised me that I could stop the Penicillin yesterday and re-start the Chemo from tonight, subject to my Blood Test Results yesterday. The Penicillin seemed to have caused a "sawdust" diarrhea but did not affect my appetite. I stopped the Penicillin yesterday and everything is returning to normal.
The Blood Tests were in the 'normal' range (for the 'Chemo weeks') and I will be able to proceed with the Chemo, starting with the Revlimid tonight.
I don't know if I just had a nasty Viral Infection with a 101+ degree fever last Monday and the 102+ degree spike on Tuesday night, that needed the Tamiflu. I wonder if the marginalized immunity played a part in the 'high fever reaction' to a virus. I may never know. However, no more long play days with the grand kids, just can't take any chances.. like the cat that sat on a hot plate! But only 10 more weeks of this Induction Chemo.
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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
I just realized that the title of this 'Member Introduction' thread is almost 4 months old!
Week 16:
This chemo is wearing me down, compounded by the weakness caused by the high fever and by the flu of two weeks ago. I used to feel fairly 'normal' for a couple of days of the week, at the end of the week (Mondays and Tuesdays) after the dex and Velcade on Wednesdays. However, the breathlessness and tiredness seems to last almost all week now.
I had managed to walk almost 3 miles (1.5 miles each, to and from a restaurant) at a steady pace on Saturday when it was windy in San Francisco. I picked up a nasal infection soon after. That didn't help, either. The stormy weather continued for the last few days. I am looking forward to a 'calm weather' week that is in the weather forecast. I cannot sleep more than 5 or 6 hours if I do not exercise and that has been a big problem, too.
Fortunately, my appetite and digestion are fine. No nausea at all. I have been able to carry out routine office work related to my business activities just fine, too. With no chance of stepping outdoors, I was forced to sit down and complete all the bookkeeping, tax returns, etc. I am looking forward to a better week, after the energy boost from dex and after a full recovery from all the infections this week.
Week 16:
This chemo is wearing me down, compounded by the weakness caused by the high fever and by the flu of two weeks ago. I used to feel fairly 'normal' for a couple of days of the week, at the end of the week (Mondays and Tuesdays) after the dex and Velcade on Wednesdays. However, the breathlessness and tiredness seems to last almost all week now.
I had managed to walk almost 3 miles (1.5 miles each, to and from a restaurant) at a steady pace on Saturday when it was windy in San Francisco. I picked up a nasal infection soon after. That didn't help, either. The stormy weather continued for the last few days. I am looking forward to a 'calm weather' week that is in the weather forecast. I cannot sleep more than 5 or 6 hours if I do not exercise and that has been a big problem, too.
Fortunately, my appetite and digestion are fine. No nausea at all. I have been able to carry out routine office work related to my business activities just fine, too. With no chance of stepping outdoors, I was forced to sit down and complete all the bookkeeping, tax returns, etc. I am looking forward to a better week, after the energy boost from dex and after a full recovery from all the infections this week.
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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
Congratulations on your almost-4 months anniversary, K_Shash!
I'm sorry to hear about your flu and nasal infections. I hope you recovery quickly and that this next week is better for you.
Glad to hear that you're still walking some. Keep that up!
Mike
I'm sorry to hear about your flu and nasal infections. I hope you recovery quickly and that this next week is better for you.
Glad to hear that you're still walking some. Keep that up!
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
Re: K_Shash's RVD induction therapy experience
Thanks for the encouragement, Mike. It must have worked!
Free of most of my allergies and viruses of the past few weeks, I am feeling much better, with the usual lack of sleep due to the dex (on Wednesdays for me). I seem to have the same level of energy this week on a day by day basis, like when I first started my chemo in mid December. I don't want to. but I believe the grandkids gave the nasty infection to me. so I am avoiding long visits and instead am meeting them for occasional lunches and dinners. Another reason to look forward to the end of this Induction. The allergic reactions made matters worse. I hope my immunity levels recover in the maintenance phase. Are yours (immunity parameter levels) almost 'normal' now?
The weather is calm here in the SF Bay Area for the past few days and this is my week off from Revlimid. I plan to walk a bit today and a lot more on Saturday and Sunday, here in San Francisco avoiding the trees and bushes. I am also hoping to do some yard work on Monday (my hobby – just using the riding mower and keep the weeds mowed behind our lot). I can only do that if the weather is absolutely calm. Might even play a round of golf on Tuesday, if the wind doesn't pick up. Watching the Masters can fire up any golfer at any level.
Looking forward to my maintenance phase. As I recall, your maintenance dosage is almost the same as my induction phase dosage, except for the Velcade shots. I hope you are tolerating your treatment well and your immunity back to the normal level.
K_Shash
Free of most of my allergies and viruses of the past few weeks, I am feeling much better, with the usual lack of sleep due to the dex (on Wednesdays for me). I seem to have the same level of energy this week on a day by day basis, like when I first started my chemo in mid December. I don't want to. but I believe the grandkids gave the nasty infection to me. so I am avoiding long visits and instead am meeting them for occasional lunches and dinners. Another reason to look forward to the end of this Induction. The allergic reactions made matters worse. I hope my immunity levels recover in the maintenance phase. Are yours (immunity parameter levels) almost 'normal' now?
The weather is calm here in the SF Bay Area for the past few days and this is my week off from Revlimid. I plan to walk a bit today and a lot more on Saturday and Sunday, here in San Francisco avoiding the trees and bushes. I am also hoping to do some yard work on Monday (my hobby – just using the riding mower and keep the weeds mowed behind our lot). I can only do that if the weather is absolutely calm. Might even play a round of golf on Tuesday, if the wind doesn't pick up. Watching the Masters can fire up any golfer at any level.
Looking forward to my maintenance phase. As I recall, your maintenance dosage is almost the same as my induction phase dosage, except for the Velcade shots. I hope you are tolerating your treatment well and your immunity back to the normal level.
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
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