Northern Lights: In Between Myeloma Treatments
It is gray and windy here, and the sun rises late. The weather nevertheless is still fine for me to go on walks, sometimes accompanied by my grandpuppy. I have had lots to mull over on these walks the past month, since much has happened to me medically speaking.
As you may remember from my last column, I was diagnosed with ductal carcinoma in situ (DCIS) that required surgery. My choices were either breast-conserving surgery plus radiation, or a total mastectomy on one side. Since the first option is said to have outcomes that are just as good as the second, and it is less stressful, I opted for it.
The surgery took place just two weeks before Canadian Thanksgiving. I am grateful to be able to say that the procedure went well, and luckily no myeloma cancer cells were detected during the surgery. It was completed as a day procedure. I was allowed to go home that same day since I had no complications from the anesthesia or other issues, and I had a quick recovery. I was back on my feet and walking around again the following day.
However, the pathology report after the surgery showed some cancer cells outside the ducts. So in order to determine whether the cancer had spread beyond the tissue already removed, I had lymphatic mapping with a sentinel node biopsy at the end of October. This procedure would show if the cancer was spreading into the lymphatic system. If it had, more lymph nodes would have to be removed.
I had general anesthesia again for this procedure, and was really tired afterwards. I also was in some pain from the surgery.
As it turned out, the pathology report from this procedure states that no cancerous cells were found in the sentinel nodes, so I will now be referred to a medical oncologist to discuss further treatment.
I also had an MRI at the beginning of November to determine whether there were more cancerous areas in my breast. I had never had an MRI before and was very apprehensive about having one. My concerns were unwarranted. The procedure only took about 30 minutes, I was not uncomfortable, and I did not feel claustrophobic in the large machine.
The MRI results showed no malignancy in the left breast, but a nodule was noted on the right side. So a repeat ultrasound was recommended to confirm the findings.
I’m currently also in between myeloma treatments.
My hematological oncologist stopped my Revlimid (lenalidomide) and dexamethasone (Decadron) treatments for three months before my surgery to make everything a little easier for me. I think it also made it less complicated for the surgeon. I wouldn’t have so much of a risk of being at a low immune status during surgery. I also stopped taking low-dose aspirin, which I needed to take with the Revlimid to prevent blood clots, since the aspirin could have caused undue bleeding during surgery.
So, rather unexpectedly, I am on a drug holiday this autumn.
While taking my treatments, my M-spike decreased to 0.1 g/dL (1.0 g/L), and all of my other blood counts were normal. I’m hoping that my drug holiday won’t affect my myeloma blood counts too much. My doctor is keeping an eye on the counts, though, which is reassuring to me. I am still getting my usual blood tests done on a monthly basis, including the serum electrophoresis and serum free light chain tests.
After two months of being off treatment, I feel pretty good, although the first couple of weeks were a little rough.
When I stopped taking dexamethasone, I had shaking in my hands and was very, very tired. The dex certainly jazzed me up, and I had gotten used to that. I also felt a bit feverish, but it was not serious.
Lately I have felt more aches and pains in the hips and legs. I have also noticed that if I walk more than about 5 kilometers (3 miles) a day, I am more stiff and tired than I was when taking dex. It occurred to me that the dexamethasone might have been masking those pains and stiffness since it is an anti-inflammatory drug. However, on the bright side of things, I am not having to deal with the mood swings and other side effects of the drug that I described in my September column.
Stopping Revlimid has allowed my gastrointestinal system to get back close to normal again. I was getting stomach cramps and diarrhea while on the Revlimid. Especially in the third week on the medication, the side effects were pretty bad. I tried to manage the gastrointestinal upsets with drugs such as Imodium (loperamide), with variable results. I really looked forward to the fourth week, when I was not taking the drug, to recover.
I would also get muscle cramps in my hands and feet sometimes. I’m grateful that I have not experienced any since coming off treatment.
Stopping low-dose aspirin has decreased the easy bruising I was experiencing. It is nice that my bruises have healed now.
I was really pleased to find out that after five weeks off of Revlimid and dex, all of my blood counts were in the normal range, and my M-spike had actually decreased to an undetectable level. I really hope it stays that way because what I am going through with my new diagnosis is enough to deal with right now.
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The quotation for this month is from Nancy Levin (1965 - ), an American author and life coach, who said: "Honor the space between no longer and not yet."
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 .
Prayers going your way. Hang in there.
Whudy from Virginia
Thinking of you Nancy. Sending prayers.
Thanks Whudy and Kim, your prayers are appreciated! I hope that I am over the surgical part of the treatments now and can move on in a few weeks to the radiation and possibly hormone-type treatments.
Praying all goes well with treatment of the nodule on the right side and that the multiple myeloma does not spike up during your drug holiday. Take care!
Thanks Susan, I am getting another mammogram and then if necessary, a biopsy too. From the MRI, quite a lot of detail can be seen, but they have to do follow up to interpret that. Hopefully this node is not cancerous though. Hope you are well.
Nancy,
All sounds positive. Some scary issues, but all seems as good as can be expected. Really happy that multiple myeloma has not raised its ugly head while you are undergoing breast cancer treatment.
How has this effected your choir participation?
Positive thoughts being sent your way.
Ron
Nancy
Hope all goes well. Sounds like the myeloma is taking a rest, and that is good. Revlimid may cause potassium and other electrolyte depletion, leading to those cramps. I use potassium and magnesium supplements to keep cramping at bay. Talk to your hematologist. They can check the potassium and magnesium levels in your blood tests and you can easily supplement if necessary. Works great for me.
Take care and again hope all goes well.
Thanks for posting, Ron and Eric! I am happy that going off of myeloma medications has not caused any increase in blood markers yet. And, the treatments for the DCIS are going well too, so that's good!
I am still singing in the choir, although of course I have had to miss some practices due to having surgery. The music is very helpful for my mindset, and the other choir members keep me on track with that. Choral singing is one of those activities where you have to focus on the music, and watch the conductor. It's a team activity. I am helping with the choir newsletter too. We start performances next week, and have songs in German, Swahili, Spanish, Huron, as well as other seasonal music. We even have a medieval song from the 1400's, a flower carol called 'There is no Rose'.
Eric, I did get some of my electrolytes tested after one of your previous comments, but all was normal thankfully. Right now, I am just grateful not to be taking any myeloma meds, but I know it is unrealistic to expect to stay off of them indefinitely. So I can keep that in mind about the potassium and magnesium supplements for the future.
Hi Nancy,
I am glad your myeloma journey goes well!
I was diagnosed with multiple myeloma 25 years ago and 9 years ago I was diagnosed with breast cancer. I decided for bilateral mastectomy.
Before breast cancer was detected, I had been treated with a thalidomide monotherapy for 5 years, which was stopped as soon as breast cancer was discovered. My multiple myeloma started going down by itself and I have been now without treatment for the past 10 years. I feel pretty lucky. I have not reached MRD but my myeloma is stable.
Revlimid and thalidomide can cause a secondary cancer, mostly blood cancers. Also breast cancer, but that is rare.
Best wishes,
Ilse
Dear Nancy, I have waited anxiously for your next column to hear how you were doing. Once again, you remain a beacon for us with your newest battle. So glad that you have had a drug holiday from Revlimid, but what a way to earn it. Also I am relieved that your body is fighting the breast cancer and signaling the myeloma cells to "stand down." Keep singing and I will keep praying.
Maureen
Thanks, Ilse, for sharing your experience with both myeloma and breast cancer. That's terrific that you are a survivor of both, and have been able to not take chemotherapies for 10 years! That is encouraging!
Dear Maureen, thanks for your kind concern. It is just a strange twist of fate that has taken me off the chemotherapy right now! I don't know what the future holds as far as the myeloma goes, but I know that in many cases, the early type of breast cancer I was diagnosed with is treatable. BTW, I have a 'nurse navigator' here who makes appointments for me, and the clinic really tries to expedite treatments for patients. I will be meeting with a medical oncologist and a radiation oncologist by another three weeks, and it takes time for surgery to heal anyways before radiation could be started.
Hi Nancy
Really, really pleased for you. You have done so well. Now you can look ahead and enjoy your Christmas and treat yourself you deserve it.
All the best,
Dean UK
Thanks, Dean, for your nice wishes, and I hope all goes well with you with the myeloma treatments too!
Hi Nancy,
Thanks for your latest column and update on how things have been going. Like many others, I've been thinking about you and am happy to hear that it is mostly good news.
One of the things that I think is cool about you - and something that I think helps you immeasurably during your journey - is your optimistic outlook. You're able to find that silver lining in a cloud. Stopping your myeloma meds in order to treat a different form of cancer is kind of tough. But you point out all the great things about going on a myeloma drug holiday. That's the silver lining!
Keep on singing and keep up the positive outlook! You have a lot of people rooting for you!
Mike
Thanks Mike, I enjoy being part of the Beacon community too, and draw strength from it. I hope that you are enjoying the autumn on the east coast of the continent, and hiking and going to ball games with your adult children too! (The World Series is over now though).
November 11 - Remembrance Day / Veterans Day - We remember those who fought in previous wars and are still working for our freedoms that we enjoy today. In light of their sacrifices anything that may affect me medically speaking is minor, and we are all grateful for the good society we live in. Back in my days of playing in a pipe band, we played on this day for veterans.
I have been thinking about you, Nancy. I am sorry you had to go through new procedures and more worries and I hope that soon you will tell us that everything is well under control again, which is the direction things seem to be going now. There is no peace with our disease, seemingly. My doctor wants to add Kyprolis to the other two medicines now, even if I am in remission, and of course, I would rather not take more stuff, as it is I sleep 12 hours a day!
Anyway, music is certainly soothing. I used to sing in a choir too, I have a soprano voice, but after I moved ten years ago it has not been possible as there is not much in this corner of the world, in the countryside, and I am in Rome only briefly every week. I do miss it!
When I lived near Boston, in the Eighties, my husband introduced me to The Boston Camerata; they are wonderful! They sing a medieval song, "Joseph est bien marié," that, if you like it, maybe you could propose to your choir.
I wish you all the best. Keep us informed about everything!
Thanks, Annamaria, for your comment. I am sorry that you are so tired from the medications you are taking! I am lucky in that right now I seem to be in remission from two cancers (!), but I still need to do radiation later this year, I think, and also will be meeting about the myeloma too with specialists. I am making the most of this interlude though.
That's nice that you sang in a choir as a soprano! I sing mezzo soprano, but of course not all songs have that part, so am also a soprano. I hope you could find an outlet for singing! The song you mentioned sounds like a good choral arrangement, and is also in French, our second language in Canada. I will mention it to the music selection committee for next year!
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