Hi K_Shash,
Glad to hear you're doing well! I hope you had a good weekend.
My immune numbers continue to be somewhat sub-normal. ANC is 1.4 (normal range 1.5-8.8), ALC is 1.3 (normal range 0.5-5.3), and WBC 2.1 (normal range 4.0-11.0). Platelets, Hgb, and RBC are also low. But the key for me is that all of these are mostly holding steady these days, and I'm feeling good.
I'm still getting 10 mg / day Revlimid everyday.
Keep on doing well!
Mike
Forums
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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, Mike.
Thanks for sharing all the information.
What precautions do you take with the lower WBC's and platelets, etc.? I hope you are managing to keep up with most of your activities in spite of that. As you will read below, being outdoors when it is windy has been a source of automatic sinus infection/swelling for me. I avoided that this weekend and since and the result is very good. I have been feeling great and itching to go play golf and start some outdoor projects. Though I cannot do that yet. However, my energy level seems to be close to the pre-chemo levels. Do you generally exercise indoors? I wonder how all the bikers manage to fight all the infections while being outdoors.
My oncologist had indicated that my maintenance therapy would consist of dex (I hope at a reduced 8 mg or 12 mg) weekly and the same 15 mg Revlimid but on alternate days. I do not know whether the Revlimid would still follow the 3 weeks on and 1 week off pattern.
Hoping that all of us keep doing well. Thanks.
K_Shash
Thanks for sharing all the information.
What precautions do you take with the lower WBC's and platelets, etc.? I hope you are managing to keep up with most of your activities in spite of that. As you will read below, being outdoors when it is windy has been a source of automatic sinus infection/swelling for me. I avoided that this weekend and since and the result is very good. I have been feeling great and itching to go play golf and start some outdoor projects. Though I cannot do that yet. However, my energy level seems to be close to the pre-chemo levels. Do you generally exercise indoors? I wonder how all the bikers manage to fight all the infections while being outdoors.
My oncologist had indicated that my maintenance therapy would consist of dex (I hope at a reduced 8 mg or 12 mg) weekly and the same 15 mg Revlimid but on alternate days. I do not know whether the Revlimid would still follow the 3 weeks on and 1 week off pattern.
Hoping that all of us keep doing well. Thanks.
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 17:
I managed quite well this week by avoiding the windy outdoors, particularly after a slight allergic reaction to the wind after long walks on Friday and Saturday. I think my sinus reaction may be similar to the eye infection experienced by many and being discussed in some detail in another thread. I have had that (cysts on the eyelid), too. In my case, I was experiencing the sinus allergies and the eyelid cyst (relatively recent) before the chemo. I usually suffered from these reactions if I played golf at one particular golf course. I get these reactions with just a long walk on a windy day, however.
It was the "off" week for Revlimid and that may have helped. I started feeling like I am 'trapped' indoors due to windy conditions throughout the week, mainly because I have been feeling almost 'normal'. I had planned some golf and some major project in the yard but the wind has been picking up and gusting over 15 mph, right from the early morning. I managed to stay busy with the tax returns and other office work but I haven't really found 'indoor projects' to keep me occupied, yet. Somehow, watching TV in the daytime, even if it is about cars and business, just seems like a waste of time. However, the weekend Masters Golf was a lot of fun to watch.
I have been dwelling on what may have been the cause(s) of my myeloma; particularly after learning that my first boss recently passed away with another type of cancer. I plan to start a new topic of discussion and see if
In the mean time, I am looking forward to the end of the remaining 8 weeks of the high-dose induction chemo. I am hoping that my maintenance doses would be mild enough to let my immune system recover and I can resume all my outdoor activities and be able to drive my convertibles with the top down. Of course, being able to spend a lot of time with the grand kids is at the top of the list.
K_Shash
I managed quite well this week by avoiding the windy outdoors, particularly after a slight allergic reaction to the wind after long walks on Friday and Saturday. I think my sinus reaction may be similar to the eye infection experienced by many and being discussed in some detail in another thread. I have had that (cysts on the eyelid), too. In my case, I was experiencing the sinus allergies and the eyelid cyst (relatively recent) before the chemo. I usually suffered from these reactions if I played golf at one particular golf course. I get these reactions with just a long walk on a windy day, however.
It was the "off" week for Revlimid and that may have helped. I started feeling like I am 'trapped' indoors due to windy conditions throughout the week, mainly because I have been feeling almost 'normal'. I had planned some golf and some major project in the yard but the wind has been picking up and gusting over 15 mph, right from the early morning. I managed to stay busy with the tax returns and other office work but I haven't really found 'indoor projects' to keep me occupied, yet. Somehow, watching TV in the daytime, even if it is about cars and business, just seems like a waste of time. However, the weekend Masters Golf was a lot of fun to watch.
I have been dwelling on what may have been the cause(s) of my myeloma; particularly after learning that my first boss recently passed away with another type of cancer. I plan to start a new topic of discussion and see if
- the chemicals used during auto repair and maintenance,
- the pesticides and herbicides used in yard maintenance and on golf courses and/or
- the high power and high frequency emf from the power Eeectronics played a role in other cases, too.
In the mean time, I am looking forward to the end of the remaining 8 weeks of the high-dose induction chemo. I am hoping that my maintenance doses would be mild enough to let my immune system recover and I can resume all my outdoor activities and be able to drive my convertibles with the top down. Of course, being able to spend a lot of time with the grand kids is at the top of the list.
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
Thank you so much for posting your experiences. My husband has just started treatment and this has helped prepare us.
He worked for the city for 30 years having exposure to multiple chemicals. One thing that has always concerned me is that they used to run the trucks indoors having exposure to diesel fumes. Somewhere I read that this is a potential cause.
He worked for the city for 30 years having exposure to multiple chemicals. One thing that has always concerned me is that they used to run the trucks indoors having exposure to diesel fumes. Somewhere I read that this is a potential cause.
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Ram
Re: K_Shash's RVD induction therapy experience
Hi K_Shash,
Glad to hear that you are continuing to do well overall, other than the allergies and "cabin fever."
You asked me a couple questions that I'll try to answer.
1. What precautions do I take because of my low platelet and WBC counts? Not a whole lot, honestly, other than trying to be intelligent about what I'm doing. I needed to start shaving with an electric shaver after my SCT, and I liked that better than the plain old razor that I'd used forever. So now I shave with an electric shaver. On the WBC, I wash my hands a lot more frequently than I used to. Almost instinctively now before I handle any food or even pour myself a glass of water. I also don't eat sushi. If I'm in a crowd, I try to move away from anyone sneezing or who is otherwise obviously ill.
2. Do I exercise indoors or outdoors? I like being outdoors! I run outdoors year-round. I've also started riding my bike outdoors now that the weather has warmed up here in NJ (rode a stationary bike in my basement during the winter). Yesterday, for example, I did a 32-mile ride. I don't seem to have the severe allergy problems you mentioned. I do have some runny nose/eye stuff during the spring season here, like hay fever. But that's no different for me now than it was before I got multiple myeloma.
Best wishes to you!
Mike
Glad to hear that you are continuing to do well overall, other than the allergies and "cabin fever."
You asked me a couple questions that I'll try to answer.
1. What precautions do I take because of my low platelet and WBC counts? Not a whole lot, honestly, other than trying to be intelligent about what I'm doing. I needed to start shaving with an electric shaver after my SCT, and I liked that better than the plain old razor that I'd used forever. So now I shave with an electric shaver. On the WBC, I wash my hands a lot more frequently than I used to. Almost instinctively now before I handle any food or even pour myself a glass of water. I also don't eat sushi. If I'm in a crowd, I try to move away from anyone sneezing or who is otherwise obviously ill.
2. Do I exercise indoors or outdoors? I like being outdoors! I run outdoors year-round. I've also started riding my bike outdoors now that the weather has warmed up here in NJ (rode a stationary bike in my basement during the winter). Yesterday, for example, I did a 32-mile ride. I don't seem to have the severe allergy problems you mentioned. I do have some runny nose/eye stuff during the spring season here, like hay fever. But that's no different for me now than it was before I got multiple myeloma.
Best wishes to you!
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, Mike.
I am not faring as well outdoors, in spite of my HgB, WBC's and RBC's being near the low end of the normal range. I am about to post the latest developments during the 18th week of my induction chemo.
K_Shash
I am not faring as well outdoors, in spite of my HgB, WBC's and RBC's being near the low end of the normal range. I am about to post the latest developments during the 18th week of my induction chemo.
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 18:
The kappa lambda test results were not available on Wednesday, April 15. I learned that the lab had some equipment problems and I finally got the results yesterday. I was disappointed to hear that my kappa FLC reading went back up from 24.8 in early March to 45, close to the early February reading. The kappa-lambda ratio rose to 3.85 from about 2.5.
I do not know if the week off from the chemo due to a high fever and flu, or some other infection, may have caused the kappa reading to go back up. I also wonder if the blood sample sitting around for an extra 4 or 5 days had anything to with a high reading. I just never expected this reading to go up during the Induction phase.
My oncologist advised me that there is no need to repeat the test to confirm the latest results. He advised me not to worry about a single reading being high. Anyway, I am 3 weeks away from the next kappa FLC test.
I was also told that these parameters may not always come down consistently and there can be some 'up and down' fluctuations at these levels.
Please let me know if any of you had such an experience during the Induction phase. I am wondering if the Revlimid or the Velcade has stopped working for me.
Also, I have had some slight body aches and pains and a 98.6 degree F (37 C) low grade fever last night. We attended a small get together and walked barely a mile on Saturday, in a mild breeze. The only other place I visited during the week was an auto dealership to get some work completed. I do not know how I could have got this new infection.
Any little ache or pain makes me wonder if the induction chemo or its side effects are to blame. It has been unusually windy in the Bay Area and I have decided not to venture out till I am done with this induction phase. Of course, I am hoping that my HgB, WBC's, RBC's and platelets will all recover and be at the normal levels soon after I go on the maintenance phase.
I would really appreciate if any of you can share your experience during or towards the end of your induction chemo, regarding the fatigue factor and infections as well as any fluctuations in the kappa FLCs.
K_Shash
The kappa lambda test results were not available on Wednesday, April 15. I learned that the lab had some equipment problems and I finally got the results yesterday. I was disappointed to hear that my kappa FLC reading went back up from 24.8 in early March to 45, close to the early February reading. The kappa-lambda ratio rose to 3.85 from about 2.5.
I do not know if the week off from the chemo due to a high fever and flu, or some other infection, may have caused the kappa reading to go back up. I also wonder if the blood sample sitting around for an extra 4 or 5 days had anything to with a high reading. I just never expected this reading to go up during the Induction phase.
My oncologist advised me that there is no need to repeat the test to confirm the latest results. He advised me not to worry about a single reading being high. Anyway, I am 3 weeks away from the next kappa FLC test.
I was also told that these parameters may not always come down consistently and there can be some 'up and down' fluctuations at these levels.
Please let me know if any of you had such an experience during the Induction phase. I am wondering if the Revlimid or the Velcade has stopped working for me.
Also, I have had some slight body aches and pains and a 98.6 degree F (37 C) low grade fever last night. We attended a small get together and walked barely a mile on Saturday, in a mild breeze. The only other place I visited during the week was an auto dealership to get some work completed. I do not know how I could have got this new infection.
Any little ache or pain makes me wonder if the induction chemo or its side effects are to blame. It has been unusually windy in the Bay Area and I have decided not to venture out till I am done with this induction phase. Of course, I am hoping that my HgB, WBC's, RBC's and platelets will all recover and be at the normal levels soon after I go on the maintenance phase.
I would really appreciate if any of you can share your experience during or towards the end of your induction chemo, regarding the fatigue factor and infections as well as any fluctuations in the kappa FLCs.
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
Clarification - The Beacon Staff pointed out to me in a PM something that I omitted when I posted earlier about my 98.6-degree temperature being a "low grade fever". Like all the thermometers, mine also shows the arrow at 98.6 degrees F (37 F) indicating that to be the "normal" temperature. However, my "normal" temperature is only 97.8 - 98.0 F (about 36.6-36.7 C). I get the same readings on both the mercury and digital thermometers I use.
I had the chills and needed to use blankets even in a nice warm room yesterday afternoon, and I sweated a lot when the fever broke around 11:00 p.m. last night. And it was only about a 1-degree above normal (for me) fever!
Fortunately, I have had no fever or sore calves and I have been feeling fine all day today.
I was also assured that my recent infection, that had sent me to the ER with 103+ F (39.4+ C) temperature in late March just a couple of weeks before the last blood test for the kappa FLCs, would be the cause of the unexpectedly high kappa FLC reading. The immunoglobulins (IgG, IgA, etc,) and the kappa-lambda chains are all part of the immune system, and the viral flu infection most likely caused the kappa FLC readings to be elevated.
I had read about infections causing a temporary rise in the kappa FLCs (and possibly in the IgG, IgA, etc.) in another thread, but I could not find it.
K_Shash
I had the chills and needed to use blankets even in a nice warm room yesterday afternoon, and I sweated a lot when the fever broke around 11:00 p.m. last night. And it was only about a 1-degree above normal (for me) fever!
Fortunately, I have had no fever or sore calves and I have been feeling fine all day today.
I was also assured that my recent infection, that had sent me to the ER with 103+ F (39.4+ C) temperature in late March just a couple of weeks before the last blood test for the kappa FLCs, would be the cause of the unexpectedly high kappa FLC reading. The immunoglobulins (IgG, IgA, etc,) and the kappa-lambda chains are all part of the immune system, and the viral flu infection most likely caused the kappa FLC readings to be elevated.
I had read about infections causing a temporary rise in the kappa FLCs (and possibly in the IgG, IgA, etc.) in another thread, but I could not find 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
Week 19:
Another pretty uneventful week. No new allergic reactions, thanks to staying in and avoiding the windy outdoors and walking out of stores with coughing people in line. Also, staying away from the grandsons – and that is hard. Easier, though, when they have obvious symptoms like a runny nose or cough.
The blood test on Tuesday showed elevated levels of WBC's (6.3) and platelets (316), well within the "normal range" but never this high (almost 50% higher than the past few weeks' readings) since my chemo began. I wonder if my system is fighting some other infection.
Again, hoping to get off this induction phase in six (6) more weeks.
K_Shash
Another pretty uneventful week. No new allergic reactions, thanks to staying in and avoiding the windy outdoors and walking out of stores with coughing people in line. Also, staying away from the grandsons – and that is hard. Easier, though, when they have obvious symptoms like a runny nose or cough.
The blood test on Tuesday showed elevated levels of WBC's (6.3) and platelets (316), well within the "normal range" but never this high (almost 50% higher than the past few weeks' readings) since my chemo began. I wonder if my system is fighting some other infection.
Again, hoping to get off this induction phase in six (6) more weeks.
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 20:
Is the muscle fatigue setting in? All was well and I ran a few errands on Thursday and did my routine exercise on Wednesday night and on Thursday (that I usually skip), the day after dex and Velcade. I had to walk almost a mile, round trip, on Friday to take care of some business in the city. It was a bit windy. I have been feeling exhausted ever since, have had sore calf muscles and experience frequent sensation of heavy chest and breathlessness.
Finally, I was feeling almost normal this morning, till I had a breakfast and went to the lab for the weekly test before tomorrow's Velcade shot. I had to lie down for about an hour upon my return around 11:00 a.m.
I just got the results from the blood test, and the WBC and platelet levels are more in line with the past results; 4.9 and 218, respectively. IF I had an infection causing these levels to be unusually high last week, it seems everything is back to normal. Tonight is the last of the 3-weeks of daily Revlimid. The next week off the Revlimid may help me recover my stamina.
I was pretty energetic and felt I had my usual energy for 4 days a week, 72 hours after the dex + Velcade on Wednesdays. Now it seems like I feel tired most of the week, except when I have the "hyper" feeling after dex. Certainly, I am going to try and curtail any physical activities for a couple of days after dex + Velcade this week, and I hope I can get a few days of 'feeling normal' like when I could go out and play a round of golf.
I am not sure much would change when I get on the maintenance doses: half as much Revlimid, reduced dex, and quite likely no Velcade shots anymore. I can only hope.
K_Shash
Is the muscle fatigue setting in? All was well and I ran a few errands on Thursday and did my routine exercise on Wednesday night and on Thursday (that I usually skip), the day after dex and Velcade. I had to walk almost a mile, round trip, on Friday to take care of some business in the city. It was a bit windy. I have been feeling exhausted ever since, have had sore calf muscles and experience frequent sensation of heavy chest and breathlessness.
Finally, I was feeling almost normal this morning, till I had a breakfast and went to the lab for the weekly test before tomorrow's Velcade shot. I had to lie down for about an hour upon my return around 11:00 a.m.
I just got the results from the blood test, and the WBC and platelet levels are more in line with the past results; 4.9 and 218, respectively. IF I had an infection causing these levels to be unusually high last week, it seems everything is back to normal. Tonight is the last of the 3-weeks of daily Revlimid. The next week off the Revlimid may help me recover my stamina.
I was pretty energetic and felt I had my usual energy for 4 days a week, 72 hours after the dex + Velcade on Wednesdays. Now it seems like I feel tired most of the week, except when I have the "hyper" feeling after dex. Certainly, I am going to try and curtail any physical activities for a couple of days after dex + Velcade this week, and I hope I can get a few days of 'feeling normal' like when I could go out and play a round of golf.
I am not sure much would change when I get on the maintenance doses: half as much Revlimid, reduced dex, and quite likely no Velcade shots anymore. I can only hope.
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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