Northern Lights: Six Months Into Restarting Treatment
As you may remember from my November column, I had to restart treatment last fall after my doctor and I had observed a rising trend in my monoclonal (M) protein and light chain levels over the previous six months.
My doctor put me on 25 mg of Revlimid (lenalidomide) daily – a much higher dose than I had taken before – and 20 mg of dexamethasone (Decadron) weekly in an effort to push the myeloma back down into another remission ... or something close to that.
After being on ‘treatment break’ from April 2011 to October 2014, I was very apprehensive about going back on these strong medications because I knew it certainly would be an adjustment to be receiving treatment again.
I have to admit, though, that it doesn’t seem like half a year has gone by since I restarted treatment.
So how has it all worked out so far?
Fortunately, the treatment is working well. My M protein has fallen from a high of 1.05 g/dL (10.5 g/L) to 0.29 g/dL (2.9 g/L), and my serum free light chain levels are back to normal ranges, although the ratio is a bit low.
Surprisingly to me, my blood counts have stayed in normal ranges so far and I have not become neutropenic yet. That was not the same after the autologous transplant I had in January 2010, when I easily became neutropenic. The fact that the blood tests have been normal so far has also allowed me to take the treatments without interruption.
I have noticed, though, that my health is a bit more fragile now that I have restarted treatment. I take more rest than I did before.
I also need to juggle my activities around the treatment side effects. For example, the dex makes me quite hyper for about three days in the week, and I take a sleeping pill for two nights to counteract that. Revlimid has affected my digestive system, slowing it down considerably. After trying out different laxatives, I am now on ‘Lax a Day’ (polyethylene glycol). However, these are still mild side effects considering the benefits I am getting from the treatment. My favorite part of the Revlimid/dex cycle is the week when I am not taking Revlimid, because I do not get as tired and I am more alert that week.
I now feel that I am functioning in two worlds: the world of the patient with blood tests, appointments, and all that it entails; and the world of a healthy person with my everyday life of family, part-time work, and interest groups.
One of my interest groups is our local myeloma support group, where I am known as a patient. Other interest groups are the choir, the needlework guild, and a book club, where people don’t necessarily know anything about my health.
People who know about my situation are quite considerate about it. However, for those who do not know anything about my medical history, I now find that I lack the mental energy to explain the issues of myeloma. I also notice that people tend to overreact when they hear the word cancer, and are so sympathetic that I have to reassure them that I am doing quite well despite being on treatment again. This all takes a lot of time and energy!
So, overall, I think I am actually doing pretty well. Perhaps this is a bit over-optimistic on my part, for my doctor and family want me to stay on treatments for the foreseeable future. Of course I will comply with that, since I want to be around as long as possible for my family and friends.
My choir will be singing the Beatles’ song ‘When I’m 64’ again this season. I just turned 64 last month, and I always smile when I sing that song, since it reminds me of my myeloma journey. And I am grateful to have reached this point in my life.
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The quotation for this month is from Lord Byron (1788-1824), an English Romantic poet and satirist, who said: “Between two worlds life hovers like a star, twixt night and morn, upon the horizon's verge.”
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.
Nancy,
Sounds like you are doing well under the circumstances. Although you are under treatment, you have been able to juggle it around and maintain your busy lifestyle. That is encouraging. I hope that you are able to maintain or even improve upon the state you are in. Perhaps if the treatment continues to work, your doctor can back down the dex and Revlimid.
Ron
Greetings Ms. Shamanna!
For you to not realise that six months have already passed between your treatment starting again and now, is a fairly positive sign, isn't it?! I am glad you are living your life the way you like, along with the treatment. And I understand that the scenario is not all that problematic, as someone who is alien to our myeloma world and its various facets, would think. Thanks for writing. Do keep us updated always!
Wishing you health and happiness,
Upasana
Thanks for your kind comment, Ron! I think I am managing alright, although as it is with any other patient I do have my 'good days and my bad days'! My husband Dilip and I have a good rapport with my doctor, and lowering doses has been discussed. I am getting close to a remission again it seems, and want to push on for that if it is achievable in a few more cycles. Because my treatments options are a bit limited, and since I really have seen the worst that myeloma can do to people, I am motivated to keep trying. We will be sensible though, i hope, and if the strong doses are not helping, may try another tactic here! Good luck to you in what seems to be a bit of advocacy work! I like learning about advocacy, guess I am a bit political by nature, but really we have our hands full in Canada trying to learn about that, so should probably just stick to problems in my own country! Also, it's nice weather again for biking here, and Dil and I just got a nice new light weight aluminum bike rack to put on our vehicle...it only weighs 22 lbs! Good luck in your road races.
Upasana, Namaste! It's amazing how time flies sometimes, and yes I feel very positive about how everything is working out right now. When people hear the word 'chemotherapy' they sometimes imagine the worst of treatments, as they were in the past. The newer 'novel' agents are easier to tolerate, and with a resource such as the Beacon, we can try to 'problem solve' and work out any issues we may have. Even the stronger treatment, the stem cell transplant, which i took more than five years ago, was helpful in my case. I do feel fortunate that these treatments have worked well for me so far. Good luck to you and your family, and I hope that your father is doing well.
Good to hear you are doing accordingly well, Nancy. As I read your column, there is one thing that really hits me: you manage your side effects far better than I do. For example, I never asked for sleeping pills while on dexamethasone. Maybe I let myself suffer too much, just to act strong to others. Gives me something to think about. Thanks for the new insights. Hope your mm stays under control for a long time to come. Take care.
I am so glad the treatments worked so fine for you, Ms. Shamanna, and pray that they work out for you in the times to come also. My father is doing alright, touch wood. He is recovering steadily from the stem cell transplant and his M-spike has dropped to zero, thankfully. Do take very good care of yourself, enjoy the warmth of the approaching summer.
Hello!
That's really good that your treatment plan is working for you. Thanks for the info on sleeping pills and dex. I like the way you describe your life, as it gives me – as a fellow mm patient – perspective on handling things (enjoying interests, family, etc.) and living our lives as normally as possible. Wishing good days.:)
Thanks for the comments! Upasana, glad to hear that your father is doing well.
Christel and Sylvia – I had a terrible time on dex when I first took it, along with Velcade, during my induction chemo. I think it's possible that I was on a 40 mg dose, but I wasn't keeping track of my labs then yet. Of course, I was also dealing with pain from fractures, psychological shock, and more! I did get 'sleep deprived'. So of course I was very nervous about taking it again.
So this time around I'm on a 20 mg dose., I firstly tried taking zopiclone (Imnovane). That seems to be a widely used sleeping pill. Then, one of my brothers-in-law, a neurologist who works in Hartford, CT, told us that he uses trazadone (Desyrel) for his neurological patients who have sleep disorders. When you think of it, dex definitely can give you a sleeping disorder! So we checked that with my family doctor (who I have been seeing for a couple of years since my family doctor I had at the time of diagnosis retired from family practise), and she said that trazadone is a sleep aid of choice for many of her patients (some of whom do have MM). Trazadone also has a mild anti-depressant effect. I tinkered with the dosage and found that two nights a week works, one on the dex day and the day following. Either just one pill a week or three pills a week doesn't work too well. Am either too sleepless or too groggy. HA! But, any sleep aid like these are prescription drugs, and would have to be checked with your doctor. There may be contra-indications that could affect you, but at least there are some choices there!
I am convinced that managing the side effects of the drugs more or less successfully is what is letting me have such a full life, and I do have a lot to live for! Best wishes with these sorts of problems also.
Nancy
When it is my dex day, I take it after a little snack before I go to sleep. The wakefulness of dex does not kick in for me until the next morning. That next day I try to do all the physical work I need to do and do not nap. This seems to take the wakefulness out of the dex experience without having to take sleeping pills. The instructions I received originally was to take the dex first thing in the morning. When I did that, I had sleepless nights.
I also found an answer for slowing down of the digestive system. Taking a magnesium supplement solved the problem. I read somewhere that 80 percent of North Americans are magnesium deficient. Your blood tests can be adjusted to check this. It worked for me.
I am on the same routine you are with 25 mg Revlimid and 20 mg of dex.
Take care and glad you are adapting to the routine.
I was diagnosed in December 2012 because of a large plasmacytoma in/on my sternum. I received 10 days of radiation that successfully treated the plasmacytoma. In January 2013 I began Velcade / dex treatment. I was working full time, and the dex made me so jittery that I could not function. I requested and was prescribed 0.5 mg Xanax (alprazolam) to take in the morning when I took dex. That made me a little groggy, so I cut the dosage in half, which allowed me to function somewhat normally. I also requested and took a prescription for 15 mg Restoril (temazepam) to sleep. I have never posted before, but after reading other responses, I thought my experience could help others.
I had learned about taking the Xanax and Restoril in 2010 when I was on long term prednisone therapy following a very serious pneumonia called BOOP (bronchial obliterans organizing pneumonia).
Thank you for all responses. I have been reading the Beacon for some time and find it informative and comforting. There is no support group locally, so all of you serve that function for me.
Kenny
Hi Eric – Thanks for posting your tips on handling side effects of dex on sleeplessness and Revlimid's effect on the GI system.
I am taking the dex at night now since that takes some of the effect of it away while I sleep. But I couldn't sleep without the trazadone, so I guess it's a trade off there. I don't think it is an addictive drug, thankfully. But if you can sleep without any meds, that's great!
I don't know if I am deficient in magnesium, but I see on the list of tests available that I could be checked for that, so I will ask my oncologist about that at my next visit. Dietary sources of magnesium include nuts, fish, grains, some vegetables, yogurt ... and I do eat all of those foods, so that will be interesting to find out about. The polyethylene glycol sort of laxative is highly recommended by the oncology nurses, who see a lot of patients taking Revlimid. It is also not thought to be addictive. We are also eating oatmeal in the morning, with dried fruits such as apricots and prunes cut up into it, and that is helpful for the digestive tract!
Hope you are doing well, Eric, and, yes, we are on the same treatments!
Kenny – It is nice that you are posting here, and I think that your advice will be helpful too! There are so many of us patients, all differing from each other, and what works for one person may well be just what another person needs to know about! I have not taken either Xanax or Restoril, but perhaps others have used them too. Good luck to you with the myeloma treatments.
Really appreciate all the comments. I've just been diagnosed with MM and am just about to start treatment. It's hard to know what to expect, especially since the old images of radiation and chemo have been culturally implanted in my brain. However, my oncologist assures me that things have changed dramatically and that those old images should be cast aside. Nevertheless, there are obvious issues to deal with once treatment begins. Thank you all for sharing. I know these comments from all of you now and in the future will be a great help to me as I tread my way through this new journey.
To Pat O'D
Best wishes on your medical treatment journey. If the O'D genetic line is predisposed to that diagnosis, then you may have a tie in to my mother's diagnosis and my grandmother's who share the O'D genes and diagnsosi.
Thanks Patricia, hope some of these ideas come in handy if you do find yourself faced with having side effects from the drugs used to treat MM. When one thinks of how powerful are drugs that will destroy cancerous plasma cells, it would surprise me if they didn't come with some unpleasantness! But since the whole idea is to treat the MM, if one can work around the side effects so that the drugs are tolerable, that is a plus for us!
'S'...that is a mysterious comment!
Hello Nancy, I am very glad to hear that the Revlimid is continuing to work in your relapse. May it continue to do so, and you will be able to reduce the dose. Best wishes!
Jan
Thanks Jan! The Revlimid/dex seems to be working really well so far, so I have my fingers crossed that it will continue to do so. I am sure that the dosages could be reduced it that is the case. It was really a pleasure to meet you, your wife and one of your daughters in February, and I hope that all goes well with your more complicated treatments also. best wishes!
Hi Nancy - I was diagnosed in March 2013. I'm currently on my second round of dex, Velcade, etc. The plan as of now is a second stem cell transplant. My biggest problem is hot flashes and the urge to binge eat after dex. Im hoping the second transplant will put me in a longer period of remission. Good luck to you and thanks for sharing.
Good luck to you also, Beth. I hope that the 2nd transplant helps you with a longer remission. I don't have hot flashes right now, although I also had them after my transplant. The urge to eat with dex is a problem too, that's for sure! It seems that any treatments we take come with some side effects, and hope you can deal with that issue too.
I'm always encouraged when I read your articles, Nancy! They are realistic, but you always look on the bright side. Keep on "kicking it."
The side effects of meds are always a challenge. I'm trying to get off of zoplicone but I just don't sleep well without it. I'm still exploring and researching.
Thanks again for sharing!
Hugs,
Sue
I'll be 64 in July and I'm hoping we can share life for a long time here in Calgary in our myeloma support group!
Hey Sue! You, me and another friend in our group are all going to be 64 this year....we are getting older, but are still striving and thriving. It encourages me no end to meet with you and the others and see that we are still hanging in together. Have a good time at the Myeloma Canada patient conference next month in Halifax...I think you are going to that? I can't make it to that because of another commitment but hope to be at an advocacy day in the fall, if that takes place again in Toronto. In the meanwhile, going to a patient engagement day in Red Deer next month. Behind the scenes in the world of myeloma care and research is interesting, even though it's a little too close for comfort some days. But this is the volunteer work we are doing now together in our group. Maybe we can make a difference, and I hope that to be so. Hugs!!