News Bulletin:
I feel so relieved and I wanted to share this "Nirvana" feeling (no wants, desires, just a peace of mind and tranquility without subconscious worries) with all the others, with particularly those who have given me such great practical advice to make my induction therapy tolerable. As I wrote to my son, it's not a great joy that I feel but a sense of relief. Also, that this leg of this journey is reaching the desired plateau, a level from which I would not want to slip from, with the help of the maintenance therapy.
My main marker, kappa FLC's, finally came down in the "normal" range, 15.7 from 20.9; well below the 19.4 "high normal" level.
Also, the last 3 readings: 24.4 (May), 20.9 (June) and now 15.7, indicate that my kappa is still going down 20% to 25% each cycle with the current therapy. Therefore, a reduced maintenance dose (about 1/2 as strong, but 1/4 side effects) should keep those nasty plasma / myeloma cells in check.
Technically, by some definitions, I may have achieved a stringent complete response (sCR). With some reasonable success, my kappa should drop further to near 10 after the planned 3 cycles that begin today. My oncologist convinced me that the additional 3 weeks of this induction therapy would be a great insurance policy.
Of course, I hope my K/L ratio comes down from the current 1.74 (1.65 the high normal) to something close to 1 - 1.25. That would indicate a better balance of the kappa and lambda FLC production by the various different plasma cells and a big drop in the monoclonal activity that was producing just one kind of free light chain.
Thanks again and I felt compelled to share this progress with the Myeloma Beacon community ASAP.
K_Shash
P.S. - Related Topic:
The flu I had in late March had my kappa reading shoot up from 24.8 or so in March to to 45+ in April! Now back on track 45 (April), 24.4 (May), 20.9 (June), 15.7 (July)! I think there is a correlation between the kappa and the immunoglobulins with flu, flu shots, viral infections, and bacterial infections. The only piece of information I could find reported a 25% increase in kappa FLC readings after a flu vaccine using dead vaccine. Initially my oncologist did indicate that the effects of the flu may last a couple of cycles! I would appreciate any information on this topic.
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
Mike,
Thanks for your continued support and your best wishes seem to have really worked for me.
I just posted all the test results (good news, indeed) and wanted to post a separate message in reply to yours.
Thanks.
K_Shash
Thanks for your continued support and your best wishes seem to have really worked for me.
I just posted all the test results (good news, indeed) and wanted to post a separate message in reply to yours.
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
Hi K_Shash,
Thanks for the update! Congratulations on your latest FLC test results. That's really good news. And it's especially encouraging that you're continuing to get the 20-25% kappa drop with each cycle. I hope that continues for you.
Best wishes!
Mike
Thanks for the update! Congratulations on your latest FLC test results. That's really good news. And it's especially encouraging that you're continuing to get the 20-25% kappa drop with each cycle. I hope that continues for you.
Best wishes!
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
Hi Mr K_Shash,
Its very nice to see your results and so encouraging. All our wishes to you.
Regards
Anu
Its very nice to see your results and so encouraging. All our wishes to you.
Regards
Anu
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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
July 23, 2015:
Really no 'surprises' over the last two weeks.
The wind in the Bay Area seemed to have subsided, particularly the last weekend was quite warm and calm in San Francisco. I had a pretty hectic Thursday and walked a bit Friday morning. Friday afternoon was rather stressful with a lot of my business activities needing attention.
As expected, Saturday was the "crash" time. The grandsons came over, without any coughs or runny noses, and spent a good half a day with us. That with the golf on TV kept me busy without any physical challenges. The weakness in the legs, particularly in the calves, was a constant reminder to take it easy.
I really wanted to be able to walk a lot on Sunday, to our favorite restaurant almost a mile and a half away, later in the afternoon. I did my best with a lot of rest and eating a banana and some high-calorie food in the morning. Of course, I had planned to return as soon as I felt any fatigue or if the wind picked up. We left for the place around 2:00 p.m. when the fatigue feeling was already subsiding and managed the round trip quite well. I had no more tiredness after the long walk.
It seems this "crash" ends just about 84 hours after the Velcade shot! The dex seems to hold it off for about 48-60 hours. There has been some discussion on taking a small dose of dex on the 3rd day after the dex - Velcade. However, my oncologist advised against it due to the possible long-term effects of the dex. One big shot per week is all he recommends, not split that into a large + small dose separated by 3 days. My physician wife agrees completely, based on her experience with different steroids many allergy sufferers have to take.
I had no problem managing a 200+ mile round trip to the Sacramento area on Tuesday, my 'almost normal' energy day. I had to walk around quite a bit at a property and climb the ladder a couple of times t inspect some roofing, etc. I was tired later in the evening but no aches, pains or cramps.
The next Kappa FLC and K/L ratio is in two weeks, and I hope to get at least 20% improvement in the Kappa FLC reading and the K/L FLC ratio in the "normal" range" (from 1.74 to below 1.65). Also would get to see what my oncologist recommends next week in our "once every 2 months" meeting.
K_Shash
Really no 'surprises' over the last two weeks.
The wind in the Bay Area seemed to have subsided, particularly the last weekend was quite warm and calm in San Francisco. I had a pretty hectic Thursday and walked a bit Friday morning. Friday afternoon was rather stressful with a lot of my business activities needing attention.
As expected, Saturday was the "crash" time. The grandsons came over, without any coughs or runny noses, and spent a good half a day with us. That with the golf on TV kept me busy without any physical challenges. The weakness in the legs, particularly in the calves, was a constant reminder to take it easy.
I really wanted to be able to walk a lot on Sunday, to our favorite restaurant almost a mile and a half away, later in the afternoon. I did my best with a lot of rest and eating a banana and some high-calorie food in the morning. Of course, I had planned to return as soon as I felt any fatigue or if the wind picked up. We left for the place around 2:00 p.m. when the fatigue feeling was already subsiding and managed the round trip quite well. I had no more tiredness after the long walk.
It seems this "crash" ends just about 84 hours after the Velcade shot! The dex seems to hold it off for about 48-60 hours. There has been some discussion on taking a small dose of dex on the 3rd day after the dex - Velcade. However, my oncologist advised against it due to the possible long-term effects of the dex. One big shot per week is all he recommends, not split that into a large + small dose separated by 3 days. My physician wife agrees completely, based on her experience with different steroids many allergy sufferers have to take.
I had no problem managing a 200+ mile round trip to the Sacramento area on Tuesday, my 'almost normal' energy day. I had to walk around quite a bit at a property and climb the ladder a couple of times t inspect some roofing, etc. I was tired later in the evening but no aches, pains or cramps.
The next Kappa FLC and K/L ratio is in two weeks, and I hope to get at least 20% improvement in the Kappa FLC reading and the K/L FLC ratio in the "normal" range" (from 1.74 to below 1.65). Also would get to see what my oncologist recommends next week in our "once every 2 months" meeting.
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
Thanks for your update, K_Shash, and for all the previous updates you've posted. This thread has become a great resource for new patients who will be going on the RVD regimen.
I'm glad you didn't have any surprises during the past week, and I hope your lab results come back with really positive news.
Good luck!
I'm glad you didn't have any surprises during the past week, and I hope your lab results come back with really positive news.
Good luck!
Re: K_Shash's RVD induction therapy experience
Thanks so much, Cheryl G.
Often I wondered if my detailed and descriptive articles were too boring.
I am really glad this on going narration of my experiences, observations and analysis, all purely subjective, were of some use to at least a few people, like yourself. This sure gives me the incentive to continue.
Of course, I have had so much help from the likes of Tracy J, Multibilly, MikeB, and many others that in a small way I hope I am doing my part, too.
K_Shash
Often I wondered if my detailed and descriptive articles were too boring.
I am really glad this on going narration of my experiences, observations and analysis, all purely subjective, were of some use to at least a few people, like yourself. This sure gives me the incentive to continue.
Of course, I have had so much help from the likes of Tracy J, Multibilly, MikeB, and many others that in a small way I hope I am doing my part, too.
K_Shash
-
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
End of the Induction Phase (July 31, 2015)?
My Oncologist stopped the weekly Velcade shots after this Wednesday. I wasn't expecting that and I have been very elated. Though there is some concern about not having had a Deep Response (that is a whole new topic on which I would like some advice).
Last week was the third week of Revlimid, of the 3 weeks on 1 week off cycle. I would be completing 8 cycles on Tuesday and I had a setback of at least two months in March April due to a bad case of Flu. The more I reflect on my 8 Cycles of this Induction phase (15 mg Revlimid, 20 mg Dex and Velcade shot every Wednesday), I am sure I have had my worst fatigue experience on the last few days and the preceding weekend during this 3rd week of Revlimid. Last weekend and even Monday and Tuesday were bad with my upper body sore, pain to change shirts, etc. Almost the worst I have felt during this whole treatment so far.
Sure enough, I am feeling better than usual on this Friday morning. A couple of walks would soon reveal IF I can undertake any physical activity. I am sure the psychological boost from not having to do the weekly blood test and spending 2+ hours for the Velcade shot at the Chemo Clinic must have something to do with it, too.
I am, of course, eagerly waiting for what the Kappa lambda's would show on Wednesday, after the Monday Blood test. I will be repeating this blood test every 4 weeks and monitor my 'well being'.
My Oncologist again discussed that it remains my choice to OR not to undergo ASCT and as he himself is not for it, he seemed glad that I had already decided against any early transplant. A recent post by mrozdav (July 21) about canceling the Transplant at the last minute after the writer's Oncology team weighed all the options, "my specialist told me that in her opinion I did not need to have a transplant, that the novel drugs now available would be just as efficacious.".
My Oncologist discussed the latest results from a Randomized study that found that an early transplant is NOT necessary for SOME Myeloma Patients. He cited that study in supporting my decision about not opting for ASCT as a 'Standard of Care'. This after clearly stating that it is an option available to me. I have already posted my thoughts about "Stem Cell Harvest: at 68 why bother?" This was well before I found out that my HMO no longer offers that option. Further, the MSmart Guidelines from Mayo Clinic also do not show ASCT as necessary for a Standard Risk (trisomies only in the Cytogenetics) Myeloma patient like me. Add to that my Oncologist saying that I have been responding well to my Induction Phase Treatment and I felt great after my 'once every 2 months' visit!
The weekend was not much different than the past few weekends, though. I was hoping that I'd have a lot more stamina this weekend, with the Revlimid off since Wednesday. However, after a bit of walking and a little wall painting / repair I was pretty exhausted. I felt a lot more 'normal' on Monday night and Tuesday. All anxious for the Kappa and lambda numbers on Wednesday!
K_Shash
My Oncologist stopped the weekly Velcade shots after this Wednesday. I wasn't expecting that and I have been very elated. Though there is some concern about not having had a Deep Response (that is a whole new topic on which I would like some advice).
Last week was the third week of Revlimid, of the 3 weeks on 1 week off cycle. I would be completing 8 cycles on Tuesday and I had a setback of at least two months in March April due to a bad case of Flu. The more I reflect on my 8 Cycles of this Induction phase (15 mg Revlimid, 20 mg Dex and Velcade shot every Wednesday), I am sure I have had my worst fatigue experience on the last few days and the preceding weekend during this 3rd week of Revlimid. Last weekend and even Monday and Tuesday were bad with my upper body sore, pain to change shirts, etc. Almost the worst I have felt during this whole treatment so far.
Sure enough, I am feeling better than usual on this Friday morning. A couple of walks would soon reveal IF I can undertake any physical activity. I am sure the psychological boost from not having to do the weekly blood test and spending 2+ hours for the Velcade shot at the Chemo Clinic must have something to do with it, too.
I am, of course, eagerly waiting for what the Kappa lambda's would show on Wednesday, after the Monday Blood test. I will be repeating this blood test every 4 weeks and monitor my 'well being'.
My Oncologist again discussed that it remains my choice to OR not to undergo ASCT and as he himself is not for it, he seemed glad that I had already decided against any early transplant. A recent post by mrozdav (July 21) about canceling the Transplant at the last minute after the writer's Oncology team weighed all the options, "my specialist told me that in her opinion I did not need to have a transplant, that the novel drugs now available would be just as efficacious.".
My Oncologist discussed the latest results from a Randomized study that found that an early transplant is NOT necessary for SOME Myeloma Patients. He cited that study in supporting my decision about not opting for ASCT as a 'Standard of Care'. This after clearly stating that it is an option available to me. I have already posted my thoughts about "Stem Cell Harvest: at 68 why bother?" This was well before I found out that my HMO no longer offers that option. Further, the MSmart Guidelines from Mayo Clinic also do not show ASCT as necessary for a Standard Risk (trisomies only in the Cytogenetics) Myeloma patient like me. Add to that my Oncologist saying that I have been responding well to my Induction Phase Treatment and I felt great after my 'once every 2 months' visit!
The weekend was not much different than the past few weekends, though. I was hoping that I'd have a lot more stamina this weekend, with the Revlimid off since Wednesday. However, after a bit of walking and a little wall painting / repair I was pretty exhausted. I felt a lot more 'normal' on Monday night and Tuesday. All anxious for the Kappa and lambda numbers on Wednesday!
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
August 5, 2015
I did get the latest results: Kappa 13.2, Lambda: 9.61 and K/L ratio 1.37, ALL within normal range!
I got these around 11:00 a.m. and I would have thought that I would get quite a psychological boost. And no Velcade today and no more from now on. I assume this is truly a stringent complete response (sCR), My kappa FLC readings steadily dropping from 24.4 to 20.9, 15.7 and now 13.2. The K/L ratio has also been dropping from around 2.4 to the current 1.37. The significance of this ratio was discussed in detail in another thread.
Now I can only hope that these parameters stay around these levels, even after the Velcade shots are stopped. The dex would be dropped soon and Revlimid dose halved thereafter, all in stages (my oncologist calls it "tapering"). This should be the case since my kappa has been dropping 20% - 25% with the Induction dose level, the last one was a 16% drop at the lower levels and it's quite feasible that the kappa, lambda and the K/L ratio remain at the normal levels (not drop nor rise) with the maintenance dose of Revlimid.
However, I had to do some simple errands without much walking today and I was exhausted! When I came back home I had to take my dex and had to lie down for almost half an hour. The Revlimid has been OFF for a week (15 mg daily starts tonight for the next 3 weeks). I can only think of the cumulative effects of Velcade as the probable cause.
I did get the latest results: Kappa 13.2, Lambda: 9.61 and K/L ratio 1.37, ALL within normal range!
I got these around 11:00 a.m. and I would have thought that I would get quite a psychological boost. And no Velcade today and no more from now on. I assume this is truly a stringent complete response (sCR), My kappa FLC readings steadily dropping from 24.4 to 20.9, 15.7 and now 13.2. The K/L ratio has also been dropping from around 2.4 to the current 1.37. The significance of this ratio was discussed in detail in another thread.
Now I can only hope that these parameters stay around these levels, even after the Velcade shots are stopped. The dex would be dropped soon and Revlimid dose halved thereafter, all in stages (my oncologist calls it "tapering"). This should be the case since my kappa has been dropping 20% - 25% with the Induction dose level, the last one was a 16% drop at the lower levels and it's quite feasible that the kappa, lambda and the K/L ratio remain at the normal levels (not drop nor rise) with the maintenance dose of Revlimid.
However, I had to do some simple errands without much walking today and I was exhausted! When I came back home I had to take my dex and had to lie down for almost half an hour. The Revlimid has been OFF for a week (15 mg daily starts tonight for the next 3 weeks). I can only think of the cumulative effects of Velcade as the probable cause.
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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
Conclusion:
As I noted in my update yesterday, my myeloma treatment has entered the "tapering down" phase and soon will be replaced by the (potentially) life-long maintenance phase. Well, this is not a curable disease but I hope I can manage a near-normal life for years, with the maintenance therapy.
IF I find something worthwhile to report, I will start reporting on a new topic. There is already a lot written about maintenance anyway.
The following is a summary of some very helpful advice I received (that really helped me through the induction phase) on this forum:
1. Coping with the sleeplessness caused by dex: A small dose of Benadryl let me get at least 4 hours of sound sleep on the night of and on the night after dex. Thanks, TracyJ.
Note: As MikeB pointed out, this may not be for everyone. I did get its use OK'ed by my oncologist and I had to drop it when I had the flu. Benadryl dries you up.
2. Avoid sugar and coffee (I could not do without my morning Java but reduced down to 2 mugs and used artificial sweetener).
3. Velcade rash: Insist on the air bubble technique: it seems now a 200-250 UL of air is recommended. Based on one accidental administration of this shot (the result was as if there was no air bubble at all), make sure the syringe is vertical when this shot is given. I just cannot think of anything else could have gone wrong, as the air bubble was clearly there and the shot was given by the nurse who had the best track record with me before and aft er that one accidental episode. So many have benefited from this simple "air bubble" technique.
Thanks ‘Dan from Arizona’ and thanks for pointing me to his article, Multibilly.
4. Cramps: I added magnesium to my intake of the supplemental vitamins and glucosamine to avoid cramps: Thanks, Mike B.
5. My personal experience with my RVD treatment was: as tolerable as can be expected, particularly for the first three+ cycles.
6. Avoid flu and air travel: I had a nasty high-fever flu and had 103+ degree temps. The Tamiflu seemed to have cured it but my kappa, lambda and K/L FLC ratios went in the wrong direction (rose), and to the best of my knowledge, this set me back by at least 2 cycles. All my fatigue levels increased and they started lasting longer, too. This could have been a cumulative effect, too. The only thing I found on the web is a single post about how an annual flu shot causes a patient to see a 25% jump in the kappa FLC level, even with a dead virus vaccine. Now I am so afraid of getting another flu infection, after my personal experience and after reading about some valuable information about the air quality on the planes (Alaska Airline incident), that I am going to do everything that I can to avoid any air travel.
7. Avoid sick people: Needless to say, this is the message above. I am 99% sure that I got my grandson's flu after he got back from the cross country flight and spent his usual Friday with us. With a major health issue to contend with, I quickly learned to be firm about no grandsons (no other sick visitors, of course) IF they have the slightest cough or a runny nose. I have been avoiding large gatherings of people and parties even from the last Christmas season and I had been quite successful in avoiding these infections except that one Friday when the family knew the grandson was sick but had no backup plan. Not my problem anymore after that nasty flu! As the charge nurse in the oncology department said at the time, "Here you are fighting for your life! Doesn't your family understand the situation?" They sure do now, but I still have to remind them every so often. My son said "But Dad! You are still so active (that was late March) and look and act so normal that we forget you have any problems at all!" I think I look the same as I did in late March, but for 2 more pounds. However, my endurance level is barely half of what I had then, at least 3 days after the dex and Velcade. Now that the Velcade is stopped, I hope to regain the stamina and walk off the extra couple of pounds, too.
8. Exercise: I read from many accounts that one should push oneself and continue do routine exercise during the treatment. Also one feels quite energetic and hyper for at least 36 – 48 hours after the dex. This did not work well for me. Any exercise I did within 72 hours of the dex seemed to worsen my ‘crash’ for the next 24-36 hours! Walking a few blocks uphill, on one occasion, even 3 days after dex, made me so tired that I dozed off all afternoon and still needed a good night’s sleep. The lack of stamina got worse with every cycle and I am sure the Velcade was the culprit and was causing deeper and longer lasting ‘fatigue’ as soon as the effects of the dex wore off. The cumulative effect of the Velcade was getting worse with every cycle.
9. Optimum Dose: My personal overall experience has been that the side effects of this induction phase have been 'tolerable'. I have read a number of stories on this forum about how many patients had severe problems coping with the dex and Revlimid. In most of these cases, I believe that the initial doses were too high. As I have reported, I cannot thank my oncologist enough for adjusting my dex to 20 mg per week (rather than the 'off the shelf' prescription of 40 mg per week that the chemo pharmacy wrote). That extra care and attention to detail is often missing in large institutions and may not be provided by myeloma experts or researchers. My personal opinion.
But think about it: How many people may have developed intolerance or resistance to Revlimid because of that? And the excess dex caused some to pass out after a meal. These novel drugs are life savers. I think a mismanagement of prescription of the dosage that can cause a patient to develop intolerance to such a life saving drug is a huge disservice to that patient. Yes, a new one comes on the market. It should be a 'back up" novel drug when and IF one develops a resistance to the current and proven drug being used. And the new drugs often have many long term side effects that are yet unknown (like in the case Krypolis). A patient can lose a very useful first line of defense. As I mentioned before, my oncologist must have taken into account my 125 lb. weight and low BMI when he prescribed 15 mg Revlimid (daily, for 21 days and 7 days off, in a 4-week cycle) and reduced my dex to 20 mg. He is pretty concerned about the long term effects of dex and wants to drop it off during this "tapering" to maintenance. He also advised me strongly against splitting my dex to 16 mg on Wednesday and 4 mg on Friday because of the worse side effects of taking any steroids more often, even at reduced levels.
ASCT:
I held a contrary opinion about the ASCT being the "standard of care".
Again my oncologist seemed to be one of the very few that concurred from the very beginning. He came to this conclusion after finding time to attend conferences, reading the latest developments and still seeing hundreds of myelomas and other blood cancers. As I reviewed almost everything that was going on with my treatment (in large part right here on Myeloma Beacon, that, too, I cannot thank enough) I did not see any reason to consult any other myeloma specialist. My physician wife did consult some recently graduated oncologist and also a senior professor from the UC system, who is one of the myeloma experts. And she (the myeloma expert) did agree that I did not need any ASCT now but I should have my stem cells harvested. This, too, seems unnecessary, as the novel drugs allow the stem cell harvest at a later date.
The recent publication Of the Msmart Guidelines was very useful, too. But at times the pressure from my son and my wife to reconsider my decision was a bit irritating. Of course, both were going by what they heard from some newly trained oncologists and what these oncologists were taught in the fellowships. My wife and our son meant well, thought I was being obstinate and wanted to help me make the right decision.
I had the same opinion (ASCT after a few cycles of Induction as the standard of care) from my personal oncologist's colleague who saw me in January because my oncologist was out sick. This oncologist, too, had completed his oncology fellowship in 2014 from a prestigious university.
Messages like “We are the best for ASCT” on various websites of multiple myeloma centers (would they be multiple myeloma centers without the ASCT facilities?) makes me wonder if there is a little marketing going on for utilizing some expensive equipment that these centers invested in.
Please Note:
OPINIONS EXPRESSED HERE ARE MY OWN AND BASED ON MY PERSONAL PERCEPTION AND EXPERIENCE ONLY.
No criticism meant toward other opinions. Also my case happens to be a standard risk IgG kappa with ‘trisomies only’ cytogenetics. Please refer to the MSmart guidelines / table for reference. Every case is different. Many myeloma patients have no choice but to opt for an ASCT. However, ASCT, in my opinion, should be recommended on a case by case basis and NOT as a standard of care. I think this is already happening.
8. Heavy Eyelids: As I wrote in the last post, I have been experiencing a heavy eyelids syndrome only recently. I do not have any noticeable swelling around the eyelids. This comes and goes, usually lasting only 15 minutes. However, sometimes like yesterday, it bothered me for hours. I think it must be the cumulative Velcade effect. I had my final and last Velcade shot 8 days ago and I was off Revlimid for the past week, too. All a bit baffling. I have not felt much of it this morning. I am editing the post a day later and I am happy to report that I have had no problem with the eyelids since my last post. I am certain that that was the last side effect of the Velcade and I am so glad that the Velcade shots were stopped; may be just in time. The Beacon Staff started that as a new topic. So far it doesn’t seem that anyone else has experienced this unusual side effect.
I am sure all of us face the same dilemma: something new goes wrong and we do not know if it is the myeloma, the treatment or something totally unrelated.
9. At these new levels (kappa FLC: 13.2 and K/L ratio: 1.35) my oncologist considers my response to the treatment "excellent". However, I did lose at least two cycles worth of time to that flu in late March and I am afraid I may have some unfortunate long term problems associated with the extra 2 cycles of Velcade in this induction phase. No bone marrow biopsy is needed to confirm that I am ready for maintenance! However, without a bone marrow biopsy, I may not have achieved a stringent complete response, by definition.
GOLF and other activities:
My son and I are hoping that he and I can play at least a weekly round of golf starting late August. I look forward to it. Fortunately, no one has ever asked why I wear a patient’s face Mask on the golf course. I assume it is not a big problem, with so many allergy sufferers around. My prepared answer is that I suffer from severe allergies to almost all the trees, bushes and grasses around.
I plan to post articles about my progress under a different topic: Transition to maintenance from induction or a better thought out heading this time. Please allow a couple of weeks before I have anything worthwhile to report.
My test results for reference:
Not shown below: Nov 22, 2014: kappa FLC 853, lambda FLC 6.69 K/L=127.5, kappa and K/L rose rapidly as shown on Dec 15, 2014
What a difference this induction therapy made! The aberration in the Mar 8, 2015 – May 11, 2015 caused by a nasty flu.
Month-Day: Dec15 Jan12 Feb9 Mar8 Apr13 May11 Jun8 Jul6 Aug3
Year: 2014 2015 2015 2015 2015 2015 2015 2015 2015
Test Normal
Kappa FLC 3.3-19.40 1070 127 48.2 24.8 45 24.4 20.9 15.7 13.2
Lambda FLC 5.71-26.30 5.75 9.21 10.6 9.78 11.7 10.3 8.39 9.02 9.61
K/L ratio 0.26-1.65 186.09 13.79 4.55 2.54 3.85 2.37 2.49 1.74 1.37
As I noted in my update yesterday, my myeloma treatment has entered the "tapering down" phase and soon will be replaced by the (potentially) life-long maintenance phase. Well, this is not a curable disease but I hope I can manage a near-normal life for years, with the maintenance therapy.
IF I find something worthwhile to report, I will start reporting on a new topic. There is already a lot written about maintenance anyway.
The following is a summary of some very helpful advice I received (that really helped me through the induction phase) on this forum:
1. Coping with the sleeplessness caused by dex: A small dose of Benadryl let me get at least 4 hours of sound sleep on the night of and on the night after dex. Thanks, TracyJ.
Note: As MikeB pointed out, this may not be for everyone. I did get its use OK'ed by my oncologist and I had to drop it when I had the flu. Benadryl dries you up.
2. Avoid sugar and coffee (I could not do without my morning Java but reduced down to 2 mugs and used artificial sweetener).
3. Velcade rash: Insist on the air bubble technique: it seems now a 200-250 UL of air is recommended. Based on one accidental administration of this shot (the result was as if there was no air bubble at all), make sure the syringe is vertical when this shot is given. I just cannot think of anything else could have gone wrong, as the air bubble was clearly there and the shot was given by the nurse who had the best track record with me before and aft er that one accidental episode. So many have benefited from this simple "air bubble" technique.
Thanks ‘Dan from Arizona’ and thanks for pointing me to his article, Multibilly.
4. Cramps: I added magnesium to my intake of the supplemental vitamins and glucosamine to avoid cramps: Thanks, Mike B.
5. My personal experience with my RVD treatment was: as tolerable as can be expected, particularly for the first three+ cycles.
6. Avoid flu and air travel: I had a nasty high-fever flu and had 103+ degree temps. The Tamiflu seemed to have cured it but my kappa, lambda and K/L FLC ratios went in the wrong direction (rose), and to the best of my knowledge, this set me back by at least 2 cycles. All my fatigue levels increased and they started lasting longer, too. This could have been a cumulative effect, too. The only thing I found on the web is a single post about how an annual flu shot causes a patient to see a 25% jump in the kappa FLC level, even with a dead virus vaccine. Now I am so afraid of getting another flu infection, after my personal experience and after reading about some valuable information about the air quality on the planes (Alaska Airline incident), that I am going to do everything that I can to avoid any air travel.
7. Avoid sick people: Needless to say, this is the message above. I am 99% sure that I got my grandson's flu after he got back from the cross country flight and spent his usual Friday with us. With a major health issue to contend with, I quickly learned to be firm about no grandsons (no other sick visitors, of course) IF they have the slightest cough or a runny nose. I have been avoiding large gatherings of people and parties even from the last Christmas season and I had been quite successful in avoiding these infections except that one Friday when the family knew the grandson was sick but had no backup plan. Not my problem anymore after that nasty flu! As the charge nurse in the oncology department said at the time, "Here you are fighting for your life! Doesn't your family understand the situation?" They sure do now, but I still have to remind them every so often. My son said "But Dad! You are still so active (that was late March) and look and act so normal that we forget you have any problems at all!" I think I look the same as I did in late March, but for 2 more pounds. However, my endurance level is barely half of what I had then, at least 3 days after the dex and Velcade. Now that the Velcade is stopped, I hope to regain the stamina and walk off the extra couple of pounds, too.
8. Exercise: I read from many accounts that one should push oneself and continue do routine exercise during the treatment. Also one feels quite energetic and hyper for at least 36 – 48 hours after the dex. This did not work well for me. Any exercise I did within 72 hours of the dex seemed to worsen my ‘crash’ for the next 24-36 hours! Walking a few blocks uphill, on one occasion, even 3 days after dex, made me so tired that I dozed off all afternoon and still needed a good night’s sleep. The lack of stamina got worse with every cycle and I am sure the Velcade was the culprit and was causing deeper and longer lasting ‘fatigue’ as soon as the effects of the dex wore off. The cumulative effect of the Velcade was getting worse with every cycle.
9. Optimum Dose: My personal overall experience has been that the side effects of this induction phase have been 'tolerable'. I have read a number of stories on this forum about how many patients had severe problems coping with the dex and Revlimid. In most of these cases, I believe that the initial doses were too high. As I have reported, I cannot thank my oncologist enough for adjusting my dex to 20 mg per week (rather than the 'off the shelf' prescription of 40 mg per week that the chemo pharmacy wrote). That extra care and attention to detail is often missing in large institutions and may not be provided by myeloma experts or researchers. My personal opinion.
But think about it: How many people may have developed intolerance or resistance to Revlimid because of that? And the excess dex caused some to pass out after a meal. These novel drugs are life savers. I think a mismanagement of prescription of the dosage that can cause a patient to develop intolerance to such a life saving drug is a huge disservice to that patient. Yes, a new one comes on the market. It should be a 'back up" novel drug when and IF one develops a resistance to the current and proven drug being used. And the new drugs often have many long term side effects that are yet unknown (like in the case Krypolis). A patient can lose a very useful first line of defense. As I mentioned before, my oncologist must have taken into account my 125 lb. weight and low BMI when he prescribed 15 mg Revlimid (daily, for 21 days and 7 days off, in a 4-week cycle) and reduced my dex to 20 mg. He is pretty concerned about the long term effects of dex and wants to drop it off during this "tapering" to maintenance. He also advised me strongly against splitting my dex to 16 mg on Wednesday and 4 mg on Friday because of the worse side effects of taking any steroids more often, even at reduced levels.
ASCT:
I held a contrary opinion about the ASCT being the "standard of care".
Again my oncologist seemed to be one of the very few that concurred from the very beginning. He came to this conclusion after finding time to attend conferences, reading the latest developments and still seeing hundreds of myelomas and other blood cancers. As I reviewed almost everything that was going on with my treatment (in large part right here on Myeloma Beacon, that, too, I cannot thank enough) I did not see any reason to consult any other myeloma specialist. My physician wife did consult some recently graduated oncologist and also a senior professor from the UC system, who is one of the myeloma experts. And she (the myeloma expert) did agree that I did not need any ASCT now but I should have my stem cells harvested. This, too, seems unnecessary, as the novel drugs allow the stem cell harvest at a later date.
The recent publication Of the Msmart Guidelines was very useful, too. But at times the pressure from my son and my wife to reconsider my decision was a bit irritating. Of course, both were going by what they heard from some newly trained oncologists and what these oncologists were taught in the fellowships. My wife and our son meant well, thought I was being obstinate and wanted to help me make the right decision.
I had the same opinion (ASCT after a few cycles of Induction as the standard of care) from my personal oncologist's colleague who saw me in January because my oncologist was out sick. This oncologist, too, had completed his oncology fellowship in 2014 from a prestigious university.
Messages like “We are the best for ASCT” on various websites of multiple myeloma centers (would they be multiple myeloma centers without the ASCT facilities?) makes me wonder if there is a little marketing going on for utilizing some expensive equipment that these centers invested in.
Please Note:
OPINIONS EXPRESSED HERE ARE MY OWN AND BASED ON MY PERSONAL PERCEPTION AND EXPERIENCE ONLY.
No criticism meant toward other opinions. Also my case happens to be a standard risk IgG kappa with ‘trisomies only’ cytogenetics. Please refer to the MSmart guidelines / table for reference. Every case is different. Many myeloma patients have no choice but to opt for an ASCT. However, ASCT, in my opinion, should be recommended on a case by case basis and NOT as a standard of care. I think this is already happening.
8. Heavy Eyelids: As I wrote in the last post, I have been experiencing a heavy eyelids syndrome only recently. I do not have any noticeable swelling around the eyelids. This comes and goes, usually lasting only 15 minutes. However, sometimes like yesterday, it bothered me for hours. I think it must be the cumulative Velcade effect. I had my final and last Velcade shot 8 days ago and I was off Revlimid for the past week, too. All a bit baffling. I have not felt much of it this morning. I am editing the post a day later and I am happy to report that I have had no problem with the eyelids since my last post. I am certain that that was the last side effect of the Velcade and I am so glad that the Velcade shots were stopped; may be just in time. The Beacon Staff started that as a new topic. So far it doesn’t seem that anyone else has experienced this unusual side effect.
I am sure all of us face the same dilemma: something new goes wrong and we do not know if it is the myeloma, the treatment or something totally unrelated.
9. At these new levels (kappa FLC: 13.2 and K/L ratio: 1.35) my oncologist considers my response to the treatment "excellent". However, I did lose at least two cycles worth of time to that flu in late March and I am afraid I may have some unfortunate long term problems associated with the extra 2 cycles of Velcade in this induction phase. No bone marrow biopsy is needed to confirm that I am ready for maintenance! However, without a bone marrow biopsy, I may not have achieved a stringent complete response, by definition.
GOLF and other activities:
My son and I are hoping that he and I can play at least a weekly round of golf starting late August. I look forward to it. Fortunately, no one has ever asked why I wear a patient’s face Mask on the golf course. I assume it is not a big problem, with so many allergy sufferers around. My prepared answer is that I suffer from severe allergies to almost all the trees, bushes and grasses around.
I plan to post articles about my progress under a different topic: Transition to maintenance from induction or a better thought out heading this time. Please allow a couple of weeks before I have anything worthwhile to report.
My test results for reference:
Not shown below: Nov 22, 2014: kappa FLC 853, lambda FLC 6.69 K/L=127.5, kappa and K/L rose rapidly as shown on Dec 15, 2014
What a difference this induction therapy made! The aberration in the Mar 8, 2015 – May 11, 2015 caused by a nasty flu.
Month-Day: Dec15 Jan12 Feb9 Mar8 Apr13 May11 Jun8 Jul6 Aug3
Year: 2014 2015 2015 2015 2015 2015 2015 2015 2015
Test Normal
Kappa FLC 3.3-19.40 1070 127 48.2 24.8 45 24.4 20.9 15.7 13.2
Lambda FLC 5.71-26.30 5.75 9.21 10.6 9.78 11.7 10.3 8.39 9.02 9.61
K/L ratio 0.26-1.65 186.09 13.79 4.55 2.54 3.85 2.37 2.49 1.74 1.37
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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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