Northern Lights: Rip Currents
As you may remember from my July column, I celebrated my five-year myeloma survival this summer.
I was particularly happy that I have not received any treatment since April 2011. Instead, I have comprehensive blood testing done and see my doctor every three months.
Unfortunately, the ‘watch and wait’ phase that I had been in since April 2011 is now over.
At the beginning of October, my blood test results showed that my M-spike had increased to 1 g/dL (10 g/L), and the serum free light chain ratio was at 11 (kappa light chains were higher at 77 mg/dL, lambdas at 7 mg/dL). All my other blood markers were in the normal ranges.
My doctor and I had observed this rising trend over the last six months. The numbers had more than doubled since the end of June.
In early July, my oncologist and I had discussed starting treatment once my M-spike reached 1 g/dL, so it wasn’t really a big surprise for me when he suggested during our October meeting that I go back on to treatment. I wasn't eager to do that again because I wasn’t feeling unwell in any way, but I saw the need of it.
I am now taking 25 mg of Revlimid (lenalidomide) on 21 days, followed by 7 days off, plus 20 mg of dexamethasone (Decadron) weekly. My doctor advised me to also take 81 mg of low-dose aspirin daily to ward off the formation of blood clots, a potential Revlimid side effect.
Hopefully, the high Revlimid dose plus the dex will nip myeloma in the bud before it gets out of control and causes new damage to my system.
Since I was off treatment since April 2011, this is a fresh start for me.
My induction chemotherapy five years ago consisted of Velcade (bortezomib) plus dex. Then I took Revlimid, without dex, for a year after my stem cell transplant. I started out at 15 mg, but the dose was lowered to 10 mg and eventually to 5 mg, because even at 10 mg, my white blood cell counts would fall below normal levels. I would have to wait an extra week before starting a new Revlimid treatment cycle for the blood counts to normalize again.
As you can imagine, I am concerned that this will happen again, especially because I’m receiving the high 25 mg Revlimid dose.
The pharmacy at the cancer center provided me with the Revlimid and dex within the hour after my appointment, and I had a review session with a pharmacist about the drugs.
I started my first treatment cycle the morning following my appointment. I swallowed the five little 4 mg pills of dex and the Revlimid pill with a nice breakfast of oatmeal. I was told that it’s best to take the dex in the morning, with food, in order to lessen the sleeplessness that can occur.
I decided to take the dex on Wednesday mornings, since Tuesday evening is my ‘choir night,’ and I am hoping to be as normal as possible for the practices.
The next two days were busy and a bit of a blur. I was sleepless the first night and didn’t really come down again for a few days.
By the time the weekend rolled around, I felt tired and fatigued, which I attributed to the Revlimid.
The dex made me hyper again in the second week. I took zopiclone to help me sleep, but since then I have obtained a different prescription for trazadone (Desyrel), which is a non-addictive anti-depressant that causes sleepiness. Both drugs gave me five or six hours of sleep. The trazadone seems to have a cheering effect on me, but also seemed to make me dizzy at times. I am hoping that I won’t have to take the sleeping pills more than two or three nights out of the week.
By the end of the week, I felt tired again.
It occurred to me that these drugs interact with each other like rip currents. Rip currents are strong, localized, and narrow currents of water that move directly away from the shore and cut through lines of breaking waves. You are supposed to swim parallel to the shore until you get out of the rip current and then head for shore. If you try to swim against it, you risk exhaustion and potentially drowning.
The Revlimid takes me in one direction, and the dex in another, and the combination sometimes exhausts me. I will have to make some adjustments to my usual lifestyle to stay afloat. I am fortunate to have a lifestyle that allows me to set my own pace and rest when I need to.
After taking the 20 mg dose of dex during the third week of the first treatment cycle, I realized that so far I have muddled along with no serious side effects. I think that I could carry on like this for as many cycles as it takes to quell the myeloma.
My main concern continues to be whether or not I can handle such a strong dose of Revlimid without becoming neutropenic.
During my first monthly check-up since starting treatment, at the end of October, I was really pleased to find that my serum free light chain ratio had already dropped by 60 percent and my M-spike had decreased by 20 percent. My white blood cell count, red blood cell count, platelets, and other markers are still in the normal ranges.
This allowed me to get the Revlimid/dex prescription for a second cycle, and I will have my next check-up in five weeks.
After receiving that encouraging news, I finished up the last week of the first treatment cycle with my weekly dex dose (as I mentioned earlier, no Revlimid in the last week). Everyone around me notices that I am very talkative after I take the dex. They also keep an eye on me in case of any problems with dizziness or light-headedness.
I’m hoping that I continue to respond well to these treatments so that I don’t have to deal with the edginess and hyper-activity caused by the dex and the tiredness by Revlimid for a long time.
Overall, I’m very grateful that so far I am managing to stay afloat and have not been swept away by a rip current.
───────────────── ♦ ─────────────────
The quotation for this month is from Ralph Waldo Emerson (1803 – 1882), an American essayist, lecturer, and poet, who said: “Sleep lingers all our lifetime about our eyes, as night hovers all day in the boughs of the fir-tree.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Good luck to you!
Hi Nancy, I am sorry to hear about your relapse, but I'm glad you're responding well with the treatment you're receiving. You made me think about when I was young and strong swimming through rip currents. I am a caregiver for my wife who is in the watch and wait phase of this disease. I always admire your strength and the way you communicate your thoughts to others on this site. Getting back to the rip currents, I feel like I've been stuck in one for the past four years. If myeloma was a rip current, I would wish we could all swim parallel to safety. Here's wishing you the best of luck and nothing but calm water for the future.
Hi Nancy, I am happy to hear you are responding to your treatment schedule. I received my stem cell transplant 4 years ago for Multiple Myeloma and have been on Revlimid since the transplant. Dosage has changed from 25mg 21 days on and 7 off to present 2.5 mg 12 days on and 16 off due to white blood counts. So far, so good.
I hope you continue to respond and will be back to treatment free real soon.
That's great that the treatment is working so fast....worked for me too! I found that if I took dex at night right before bed, I got to sleep before it kicked in and then zoomed around all the next day. I stopped taking sleeping pills completely! Continued good health. Thanks for all of your articles, I always enjoy reading them.
Hi Nancy, very sorry to hear about your relapse. Even when you know it will kick in it's still a shock when it does. I wish you well with this round.
Nancy, I'm glad that you are doing well thus far with your treatment. I'll be keeping you in my thoughts and prayers. Keep your chin up!
So sorry to hear you are back on meds, but happy for you that it seems to work Nancy. I hate dex, it really acted like a rip current that raged through my body. I also turned ugly yellow on days I took dex 40 mg and gained in total 50 pounds. When my rip currents( I suspect dex ) kicked in, I had to lay down until I reached the shallow waters. I think 25 mg a day for Revlimid (3 weeks on 1 week of )is a high dose to handle. I did it 7 cycles in combination with bortezimib and dex, 4 cycles before my transplant and 3 after. At the moment my maintenance is just Revlimid. I started on 20 mg constantly but I am down to 5 mg (3 weeks on 1 week of) because of rashes and neuropathy. Take care Nancy and keep the bugger down.
Nancy,
Sorry to hear that your numbers were climbing but happy to hear that the RD is working. I suspect that the lions share of you side effects is being caused by the Dex. I have been on Dex continuously for 5 1/2 years. First at 40 mg a week then 20/week then 20 every 2 weeks and now 8 mg every 2 weeks. Even with a low dose like 8 mg the effect take about 60 hours to subside. If I take the Dex at night I usually can sleep as it takes a few hours for it to kick in. The second day and night I am up like like on an extreme caffeine high. My HR is elevated and I have insomnia and some moodiness (Good side effect is my arthritis is held in check). The second full day I am up for about 1/2 of it then by the second half start to crash and am fatigued but still have some insomnia. The next day - 3rd day the effects are wore off bu still am tired primarily to the lack of sleep and being "up" the prior 2 days.
I noticed this effect is heightened with the higher dosage but the time frame is the same whether it is 8 mg or 40 mg. I was also on Revlimid for about 3 years at 10 mg on 21 off 7 but did not notice fatigue. Therefore based on my experience I suspect the dex is causing most of your fatigue issues. You will hear this from many Dex patients, "After the "high" there is the "crash"."
Ron
Thanks everyone for your kind and insightful comments! This is another experience on my myeloma journey, which I hope won't last too long. The idea is to push the myeloma counts down as quickly as possible of course. I agree that the Dex is the main culprit here in causing side effects, since I did take Revlimid before without the steroid and it was more of just tiredness that I had. But the velcade /dex induction had an extreme effect on me, which is why I am very leery of not sleeping, and will take sleeping aids when I need them.
It is great to have our online support ongoing at the Beacon, which I do rely on, as well as my local support groups too. Tonight I went to a talk given by the pharmacists from our cancer centre, about myeloma drugs, arranged by SAMPS. I came away from that with the distinct feeling that I should be drinking LOTS of water, in order to stay hydrated, ward off blood clots, protect the kidneys, and generally decrease the potential of harmful side effects. Also had a reminder to stay away from NSAIDS and supplements while on treatments.
Nice to hear from you, Tabitha, Karen, Loretta, and to hear about your experiences too Joe! I hope your wife does really well. Kathy and Ron, thanks for the tips about taking dex at night, maybe I should try that too. Celeste, I hope that everything continues to improve for you. Christel, sounds like you have already been through a lot with treatments and also hope for you that you are into more calm waters now!
Hi Nancy S,
I echo the sentiments of everyone above and know that I am sending positive energy your way. Sounds like you are responding well and I am sure I will be reading a column soon that you are enjoying a 2nd remission!
Mark
Thanks Mark, I hope that everything works well too of course! I still feel fortunate compared to many who are coping with much worse problems than I have to contend with. Hope you are well, and enjoying your remission from the auto/allo combination (I think that is you??). Since I did have a long break from taking chemo drugs, I am in much better shape going into this round of treatments than I was at dx. My 'M' spike was at 58 mg/l, but now it's only 10. I don't think that SFLC testing was done here in '09. At any rate, I don't have those values, but I am sure they were a lot higher than they are now! My dr. is following guidelines for when to restart treatment...It was a combination of the 'M' spike value and also the fact that the values had more than doubled over three months!
Hi Nancy,
I'm sorry to hear that your numbers reached the level where you needed to start treatment again. I'm sure that's a disappointment to you, but I really appreciate the way you posted the facts about what has happened. I'm very glad to hear that the initial test results after you started this treatment regimen look encouraging.
I'd also like to echo what Ron said about the dex crash. I expect that may be more responsible for your weekend fatigue than the Revlimid. But there are so many interactions between these drugs that it's impossible to tell for sure. Your rip tide analogy captures that well. I think of us all as being biochem experiments with an N of 1, which Arnie Goodman expressed so well in one of his columns.
Keep up the good work. I'll be looking forward to hearing that your FLCs and m-spike dropped even more next month!
Mike
I'm so glad to read you're responding so well. After my first relapse I was on Rev/dex for @9 months and then was off for almost a year. Now I'm back on but it's keeping my numbers stable. I've learned to take dex before bed too, as one other person posted. Then by morning I'm a little hyped up, then crash in the afternoon for a few hours. Then the next day I'm a little hyped but most of it's over. I take Ativan to sleep and that works well.
BTW, what is the US comparable of the m protein numbers?
Best to you and it sounds like it's very successful already.
Nancy-
I'm sorry to hear that you have relapsed and restarted treatment. I officially relapsed and restarted treatment 2 years ago this month. Since I had done well in induction with Revlimid and dex, that's where we decided to start. My Revlimid dose was again 15 mg for 21/7 and dex lowered from 40 mg to 20 mg once a week. My m-spike and Freelite numbers and ratio had slowly climbed for 2 years and then took a major jump between 6 week appointments 2 years ago. My oncologist had set 1.5 g/dl as the benchmark for restarting treatment. The numbers had jumped to 3.6 g/dl and very high kappa light chains and ratio when I saw him 2 years ago. He gave me a month to achieve a good reduction in my numbers before he would decide whether to add Velcade. Well, I responded so well to the treatment regimen that by the end of the first month my numbers had dropped by 50%, way below what the oncologist had decided as the level to add the Velcade.
By the third month my m-spike had dropped to 0.5 g/dl and has stayed stable since then. This past May my blood counts dropped drastically so that my oncologist stopped the Revlimid for a month to allow my counts to recover. They did. So, he reintroduced Revlimid, but at 10 mg 21/7. I have been doing well with that regimen since then.
I, too, take the dex at night so that I sleep the first night, have energy the next day, and either sleep well the 2nd night or don't. When I sense that I'm going to have trouble sleeping I take 5 mg of Valium which allows me to sleep fairly well. It also helps to eliminate muscle spasms that can be difficult during the sleepless night. I have a mild crash on the 2nd full day. 20 mg of dex is so much easier to live with than 40 mg was. I have noticed lately, though, that I am more likely to be negative about dumb things when talking with other people these days. I will have to monitor myself a little better.
The overall fatigue isn't too bad with this regimen, but I do have to be mindful of how I am feeling and honor fatigue when it gets to be overwhelming. I've also learned to take the dex within a range of 3 days depending on what I have planned to do. If I have something that requires a lot of energy one day, I take the dex the previous night. If I am going to speak publicly one week I have gotten the ok from my oncologist to skip a dose, or two, occasionally because my voice gets affected by the dex and tires easily when speaking non-stop for more than 10-15 minutes. When one is presenting at seminars, or singing like you do, that can be a problem.
I wish you well with this latest path on your journey. Keep us up to date with how things progress.
Nancy in Phila
Thanks everyone, I am just overwhelmed actually by all of this support from my online Beacon friends! I went out for a walk with our 'grand puppy' in the snowy brightness and came back to your comments. It was up to -12 C (10 F) today; we had a real cold snap, down to -20 C (-4 F) this week, which kept me indoors more than I like to be. Next week should be more seasonal, just hovering around zero C (32 F), which is perfect for walking.
Mike Burns, thanks for your note. In the US values, divide ours by 10, i.e.. my M spike of 10, which actually was at 8 last time we checked, would be 1.0 for you. I think that the sFLC values are the same. The Binding Site company which produces those tests for sale is actually out of the UK. It's an international concern. I have to thank you once again for getting me onto the EdX classes online too. Now I am working on the Immunology 2 class, just auditing it. I can barely keep up some weeks, but am learning a lot and one of these days it will all fall together in my mind and I will be better able to understand the research going on now, especially at the antibody treatment levels. Are you still working on those classes too?
Christina, thanks for sharing your experience too, which seems similar to mine. I am definitely going to try taking the dex at night next week! I am having my 'good days' and my 'bad days' right now, as the saying goes with cancer patients! So anything I can do to tweak side effects to the more positive side would be helpful.
Thanks Nancy! I always appreciate reading your helpful advice on the Beacon's forum to patients and caregivers. Interesting to hear about your treatment history too. I know what you mean about one's voice being affected by the treatments. The first week I was on this my voice was sort of constricted. I take voice lessons as well as singing in a choir, and was gulping a lot of water to try to get my usual strength there. I was really afraid that I might have to quit singing, which I would miss a lot. But with a lot of hydration it seems to be OK, and of course I am trying to stay hydrated anyways, so it's good to be sipping water. Our performing season is coming up starting next week, and although I won't do our main concert, which can have up to 600 in the audience, we have several performances at retirement residences, and also a choral festival which is a fund raiser for the Calgary Food Bank. I so enjoy the festive season, and will just get out to as many events as time and energy permits! What sort of public speaking do you do? Are you involved with speaking to myeloma support groups? I am sure that you would be an excellent speaker.
Hi Nancy,
I'm sorry to hear about your relapse. I'm so glad to hear your numbers are improving. I am new to this site and am so grateful for all of your contributions to it. The Myeloma Beacon is my Multiple Myeloma University, or MMU. I check it everyday. I am a caregiver and my husband's diagnosis was in July of this year. Four months ago I didn't know what multiple myeloma was, nor what relapse meant, etc. but I'm learning thanks to everyone's generous sharing. As a neophyte, I still have so much to learn, much of it at the impending ASCT next month.
Thank you for all the wisdom you have shared.
Hi Cindy, The Beacon is a great site. When you think of all of the many contributors – the patients, caregivers, Beacon Medical Advisors, science writers, columnists – it's just great. I think it is my MMU also!
I only found it due to the leader of our support group, Carol Westberg, sometimes forwarding columns to us through our emails. She is gone now, unfortunately, but she did an awful lot to help patients in our area. That was when I was already almost 1 1/2 years after my diagnosis, I think. So since then I have been reading it too! I am proud to contribute to it as a columnist, for it's an honour to write here.
I hope that your husband does really well with his treatments. Knowledge can demystify and enhance our understanding. That can be very helpful to us at times, since myeloma medical science is on new frontiers and many treatments are available to choose from.
Aloha Nancy,
Your description of opposing rip-currents is right on. I feel the same way and will use this to describe the sensation in the future.
Because I hate the dex swings my doc has me on a different steroid called methylprednisolone - 8 mg every other day - and it has deepened the response to the Revlimid like the dex did but without the major mood swings.
This new (to me) steroid in the smaller steadier doses still causes some hyperness but it is pretty minor. I think I also become more used to it because I am taking a steady dose.
You might want to ask your doc about it if the dex is bothering you.
Aloha & Good luck!
Tom
Thanks, Tom, I will make a note of that drug! If I need to be on steroids for long I could certainly see switching to a milder variety too, especially if it is still effective. What I am getting now is sort of a standard protocol, I think, for this type of relapse. Sorry if I do seem a little 'over the top'!
You know, the rip current analogy does come from signs and warnings on beaches we have visited — think of Hanauma Bay on Oahu, or Bondi Beach in Sydney. I would never swim in those currents, but the imagery is strong and of course when reading local papers in those areas one does learn of swimmers, surfers and kayakers who have been swept away by the currents! Scary, and a real hazard. One thing I really like about those beaches though is how good the lifeguard system is. We are going back to Maui again for a week in December, and that's great to look forward to ... out of our winter into your semi-tropical climate. There is a direct flight from here; it's a really popular destination for a holiday break!
Hi Nancy, I haven't been on the Beacon for a while (I tend to keep an eye on the Beacon via Facebook) I have been busy baking, tasting, photographing and typing. I want to try and get as much done before it gets too hot here to bake.
I am sorry to hear that your paraprotein was on the increase but I am glad that Rev and dex are getting it back to where it should be. Ah good old dex -- I've noticed that a couple of people mention that they take it at night. When I was on 40 mg once a week I would get up at ~3 am, have a milk drink and take my dex. I would go back to bed and have a couple more hours of good sleep. However, when I was on high doses of prednisolone (160 mg - to treat my GVHD) everyday, I couldn't do it. Getting up at 3 only works if you only have to take it once/week.
BTW I was hanging out the washing last weekend and saw an echidna taking a stroll in our backyard - it was a great sight to see. Take care and I hope those numbers keep on going down. Libby
Nice to hear from you Libby, and hope you are doing well! Your seasons being reversed to ours I can imagine you would not want to be baking in the summertime! We have relatives in Sydney, and last time when we were there, we visited the Featherdale Wildlife Park, where there were echidnas! The Australian flora and fauna are so interesting ... glad I have had the chance to visit there.
Here it's quite cold. Saw two deer in the front garden yesterday, right close to the house, and a few days ago a deer was just sitting in the back yard, next to the woods behind us. I can't get annoyed with the deer, even though they do eat the shrubs and flowers in the spring!
I have kept my medical test printouts, but it doesn't say what dose of dex I was on at diagnosis. It could have been 40 mg, since others in my support group said that they were on that dosage at the same time. Anyways, I think that 20 mg is alright for now, and if I get good results from that, that's all I want really!
Have a great day!
Hi Nancy,
Glad you're continuing with the EdX courses! I really enjoyed the EdX MIT Intro Biology course, felt like I learned a ton. I didn't take either of the Immunology courses because I thought I still needed a deeper grounding in General Bio first. So I signed up for the EdX AP Bio course series. But the early lectures were a huge disappointment, and I started reading the optional online OpenStax textbook associated with the course instead. It's great! I ended up buying the print version of the textbook, and it arrived this week - 1500 pages! That will keep me busy for awhile!
Best of luck to you with Immunology II.
Mike
Thanks Mike, good luck with your online and home based reading courses also! I too signed up for the MIT Intro Biology, but soon realized I can only do one class at a time, and since I have gotten this far with the Immunology class, will try to finish it up. But it's good I am only 'auditing', since I don't always have enough time to do all of the course work! I also have a really thick Intro Biology text that I got from a young friend at university. She was just going to sell the book anyways, so I bought it from her. I can't believe how far advanced biology is now from when I was a student. There is a lot of genetics and finely detailed chromosomal studies. It's so interesting that it is easy to get caught up in it!
Hello, Nancy!
I wish you good days with the new treatment. That is good news that your numbers looked so much better after starting the new drug regime.
You sound strong. Go, girl.
Thanks Sylvia, you stay strong too! I am very hopeful that everything will work out well!
Hi Nancy,
I remember when you shared with our support group that you'd reached five years after your myeloma diagnosis. When you relapsed just recently, you attacked it with strength and an inquiring mind. Your knowledge of microbiology is very helpful. I'm happy to hear that your numbers are going in the right direction; it makes the drugs easier to tolerate. I'm on 10 mg of Revlimid three weeks on and one week off -- currently no dex (diagnosed in Feb. 2012). I've never reached remission but have been "stable" for over a year. Sharing your great attitude, sense of humour and knowledge helps us all dear friend. Blessings.
Thanks Sue! The support group helps me a lot too, and I have met some wonderful people this way. I always enjoy working with the group on the projects we have, such as our walk/run, and the educational conferences. You are a very kind person, and I am glad to have you as a friend!
Hi Nancy,
You have been very instrumental in helping me decide to go palliative or on meds (Jan 2013). I had started on 25 mg Revlimid and 20 mg dex and did well for the first 3 months. Then bang - anemic. Thereafter, 15 mg Revlimid. Watch yourself with the aspirin. I never had "thin blood". After also taking aspirin, I bled like a son of a gun when just nipping myself cutting onions. Bled "thinly" for almost 3 days.
Anyway, after reducing the Revlimid to 15 mg my numbers continued to go down steadily (not as fast). I had started with over 7000 IgG.
I have also posted on the forum about getting off meds to give my body a rest and feel super (of course my numbers went up -- quality of life great
Wishing you the best,
Kate
Thanks Kate, and hope you are doing well. Actually, it wasn't my decision to stop the meds. I had already gone thru four cycles of Velcade / dex, then an auto stem cell transplant, then a year of lower dose Revlimid. But I got into a non detectable remission and the last few months I did not have an 'M' spike. After being on treatment for all that time, I too was ready for a break. We stopped the Revlimid since right at that time a study came out linking the use of Revlimid to secondary cancers. I do not think I would have been started on treatment again until I had this 'relapse', where I live.
I am also not a 'high risk' patient in terms of chromosomal abnormalities. I think one needs to get expert advice on whether or not to be on treatments! Now I will probably be back on treatments for awhile again!
Hello Nancy, I have not been on the Beacon much lately, as I am in Philadelphia at UPenn for my second ASCT followed by CAR-T cells, as part of a clinical trial. Along with your many friends and followers, I too am sorry for the news of your relapse. Your 3 1/2 year remission was much welcomed, I'm sure, and you certainly detected the recurrence early. I agree with your choice of Revlimid and the dose, along with dex.
Sure, you may need to taper the dose per your hematologic parameters, but the higher dose is more effective initially. As you well know, you have several other options, even in Alberta, but getting good mileage out of the tried and true is worth it. In terms of the dex, I found that taking it early AM is the best tolerated. Ativan helped my insomnia. So hang in there; your second remission is likely!
In my case, I ran out of FDA approved options, and have ruled out a salvage allo for my refractory myeloma. So after a thorough search for clinical trials, the one that I chose involves a second ASCT, followed by CAR-T CD19 T cell immunotherapy, only available at UPenn. Studying the basic science and clinical application of this innovative therapy has been fascinating!
Today I am day 12 post ASCT; it was tougher than the first, but now I have engrafted, and will get my genetically modified T cells, which I apheresed here 6 weeks ago, tomorrow morning. I am convinced that some type of immunotherapy is the key to the Holy Grail of cure for myeloma. I'll keep you posted.
Best wishes to you; with my daughter loving Canmore, I look forward to meeting soon! Namasté, Jan
Namaste Jan! I was wondering how you were doing since you often post in to my column and participate on the Beacon in general. Glad your daughter likes Canmore so much. Lots of wildlife up there and it's quite a young crowd I think! Many skiers and snowboarders will be hitting the slopes now, after all of this snow and the cold temps.
Believe it or not, I have also visited U. Penn, way back in the 80's, when some of my in-laws were teaching and studying there. What a beautiful campus that was (is still?).
Your habit of researching all options is serving you in good stead and I am wishing you all the very best in the new 'CAR-T CD19 T cell immunotherapy', along with the second ASCT. I am sure that all on the Beacon are cheering for you!
Yes, 'Even in Alberta' (!) I do have options. As well as the approved drugs here, such as Revlimid and Velcade, we have drugs available by special access and also on clinical trials. Of course, I hope that all of these new drugs will eventually be available here through the 'prescriptions' at our cancer centre. We also have world class clinicians and researchers. I feel I am in good hands, and I am getting more into drug advocacy, which I find to be interesting also. Our next push would be to advocate for Pomalyst, since it seems to be almost approved here, and the special access program for enrolling new patients ends as of Dec. 31.
I am hoping for the best with the Revlimid / dex combo. If that works for me, I would probably go onto 'maintenance' without the steroids.
Next time you and your family are in Canmore, you must look us up! Best wishes for this new therapy for you. Stay strong!
Thanks for your column. It's always an inspiration.
Thinking of you, Nancy.
I am a 62 year old practicing physician diagnosed with kappa light chain MM in September 2014. I was classified as stage 1 with no high risk features or chromosomal abnormalities I have received 3 courses of Zometa and was started on dex 40 mg weekly and Revlimid 25 mg. After my first cycle, my M spike decreased from 3.2 g/dL to 1.7 and total protein from 9.5 g to 7.2.
My problem is that I have suffered from all the frequently discussed side effects in these forums. In addition, I have experienced 3 episodes of passing out after meals during the last 3 days before my next dex dose, which I suspect are from insulin overshoot while having higher blood sugars during the first 4 days caused by the dex. I am now monitoring my blood sugars with a glucose meter even though I have never suffered from diabetes. I have experienced severe fatigue and a feeling of exhaustion that makes difficult to keep with my work load. These symptoms improved greatly the week I was off Revlimid!
I just finished the first week of my second cycle and the level of fatigue and mind fog was brutal! My oncologist just reduced the dose of Revlimid to 20 mg, which I am waiting to receive and start. The last 3 days off Revlimid but on dex have been much better. I am concerned that slightly reducing the Revlimid dose may not cause as good response as I was experiencing, and wonder if others have been in my situation and will like to share their experience. It seems that the overall side effects are worse during the first week after the Zometa infusion.
Going through this experience as physician and patient has been a learning experience that is making me a more caring and understanding than I have ever been. Thanks. Dr Santiago
Thanks Dr. Santiago for sharing your experiences and perspectives about the treatments you are taking. Probably if you also post your concerns over to the Beacon's online forum, you will have others posting in with their wisdom too!
I personally don't think one can expect to be working at full capacity when taking such strong anti-myeloma drugs! I have also experienced some light-headedness, and tiredness from the strong Revlimid dose. The 'dex' does make me quite hyper, and I am taking a sleeping pill a couple of times a week so that I don't get sleep deprived. I am fortunate in that my dear husband keeps an eye on me and helps me to monitor my symptoms. (He is also a doctor.)
To me, however, the amazing thing is that these drugs may work VERY well, and thus set back the growth of the mutant plasma cells to a lower or even undetectable level. That was my case previously, when I was in a remission. It's a jolt to be back on meds again, but I am hoping that the need for strong doses is just temporary.
When I think back to five years ago, when I was just starting on this journey, I feel much more confident now that everything will work out OK. At that time, I did know of people who, not having the newest drugs due to them not being yet available in Alberta or Canada, had terrible outcomes from myeloma. Thus I put my trust in the newer treatments available to us patients. Hope that helps!
You may need to slow down and make allowances for being on chemotherapy, and I think that most people are understanding of one's need to do that. At least Revlimid / dex is an oral combo, and so no need of going to the infusion centre for IV treatments, either, which is a convenience.
Hello Nancy, I have always enjoyed reading your E mails stories and poems. I was sorry to hear that you have relapsed,but also happy to hear that your Re/Dex is helping.
I had my transplant May 2012,and see my Oncologist every two months now. I have not been put on any Rev post treatment,as some patients are. So I am in the wait and see how long I have before relapse. I do however have a problem with very itchy skin on both of my arms only,and am wondering if any other Myeloma pts have developed this. Its very bad at night and interfers with my sleep. There is no rash,just a picking feeling that makes me scratch,and only ice packs help calm this feeling down. I send you my well wishes on good results with your treatments..Diana.
Thanks Diana! I do enjoy writing for the Beacon, and hearing comments from readers also!
I hope that you don't relapse for a long time, if you ever do. Looks like there are good treatments coming on stream all of the time, and myeloma researchers are working really diligently to help us to get to a better place with our health issues.
For the itchy skin, have you tried moisturizing creams for your skin? I found that my scalp got itchy when I started Revlimid again, but have been using shampoo with pyrithione zinc (similar to anti-dandruff shampoo!). That has helped to clear up that problem. If you like, post the problem over to the Forum, and probably other readers will have advice too.
Have a good holiday season!
Thank you, Nancy,for your reply. I have tried every cream out there for my arms and changed laundry powders, all to no avail. My dermatologist thinks its a nerve damage problem, and that is why I am seeing a neurologist this Wednesday. I will post on the forum like you suggested. You have a good holiday with family, and I wish you good health.