Northern Lights: Meshing Two Diagnoses
At the end of April, prairie crocuses in bloom, I planted pansies and carnations in planters, and then another winter storm dropped more snow on us – our version of April showers! Now, two weeks later, and after having some warm and sunny days, my garden is springing back to life. Little bulbs, such as Siberian squill, are in bloom, and the daffodils are in bud.
It’s hard to believe that two months have passed already since I last wrote about trying to choose between treatments to deter any return of the breast cancer I was treated for last fall. Regular readers of my column may remember that I needed to have surgeries and also radiation treatments for that.
At the time of my breast cancer diagnosis, my hematological oncologist stopped my treatments for multiple myeloma, which were Revlimid (lenalidomide) 25 mg daily for 21 out of every 28 days, and 20 mg dexamethasone weekly. He correctly surmised that the treatments for the breast cancer would be a lot for me to handle. In addition, I was in a remission, with a very low M-spike and all other blood markers in the normal range. (When I go to get blood draws these days, the lab technicians use only my right arm; there is a risk of lymphedema in the left arm due to some lymph nodes I had removed for testing during surgery.)
I was hoping to have a few months away from multiple myeloma treatment, but here it is, over eight months later, and I am still having very low counts. My M-spike is now at 0.12 g/dL (1.2 g/L), and the kappa-lambda serum free light chain ratio is very low as well.
However, there has been a slow, glacial creep upwards of these counts, and it is possible that I will have a second relapse (hopefully just a serological one, as in 2014). If my M-spike goes over a value of 0.5 g/L (5 g/dL), I might have to go back on to treatment. Of course, I am hoping that won’t be for a while yet.
Meanwhile, I have been kept busy with various appointments and new treatments related to the breast cancer.
I decided to start taking the aromatase inhibitor anastrozole (Arimidex). I also continue to take my daily low-dose aspirin and multivitamin pill plus a vitamin D tablet. I haven’t had any noticeable side effects yet from the anastrozole, but am only into the second month of it.
The medical oncologist who prescribed the anastrozole also suggested that I could start bisphosphonate treatment if my hematological oncologist agreed with it. Upon consultation with the hematological oncologist on the topic, I was advised to get caught up on any outstanding dental work. This would reduce the chances of osteonecrosis of the jaw, a side effect of bisphosphonate treatments. I could be taking Aredia (pamidronate) every three months while I am taking the aromatase inhibitor.
So I did get caught up with dental work, which included getting six new ceramic crowns and a few fillings. I had been delaying this work while I was undergoing my other treatments. As I result, I am galloping through the dental work in six weeks. I am still waiting to get the permanent crowns on three teeth, but most of the work is done. I have been taking Tylenol (acetaminophen / paracetamol) and/or Advil (ibuprofen) to cut back on the jaw pain from the procedures.
The medical oncologist also ordered a bone mineralization density test and some lipid tests.
The bone density test was ordered to determine just how osteoporotic my bones are, because aromatase inhibitors are known to cause thinning of the skeleton. I had that test done in the first week of May. Although I do not have the final results from the test, the preliminary results looked good. My bone density was a bit above normal for my age group, which astounded me. I will certainly keep on with walking and other weight bearing exercise, since that helps with bone strength.
I haven’t had the lipid and cholesterol tests done yet, but they are to indicate whether the anastrozole is in any way affecting my lipid metabolism. More women die of heart problems than of any other cause, including cancer, so it is good to be aware of heart health.
On the whole, I am enjoying spring.
The time away from multiple myeloma treatments has been very nice because I no longer experience the side effects from Revlimid and dexamethasone. I am well aware, though, that this treatment break may be temporary. I am therefore trying to build up my strength in case I need to face new challenges with my health. I am walking or doing some sort of exercise every day.
In addition, my husband and I are trying to get better organized at home so that our life is simplified and we can enjoy ourselves better. So, for example, we have donated a lot of unused and used items to charities, such as the local thrift shop and fabric and book sales. We also have been working on getting the interior of the house painted, streamlining our garden work, and just trying to spend lots of quality time with each other and our family.
Hopefully, things will continue to go well for a while.
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The quotation for this month is from Katrina Kaif, a British film actress and model born in 1983 and known for her work in Bollywood films. She said: "Going by my past journey, I am not certain where life will take me, what turns and twists will happen; nobody knows where they will end up. As life changes direction, I'll flow with it."
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 .
All the treatment and appointments for multiple myeloma are a lot. I can't imagine adding another cancer to the mix. You are taking it in stride very well. As I wrote last month, I concur with the streamlining of life. Take care and enjoy your spring.
I agree with Mark--you are handling this so well. I wish you all the best.
Nancy, I am so glad you are still "enjoying" the holiday from multiple myeloma treatment. I just had to thank you for your inspirational words, your example. You make it sound easy when we know or can imagine how tough it is. Lots of positivity and grace I hope is multiplied for you. All of these columns help more than all the columnists might know! Wishing you sunshine and warmth.
Hummingbird, Susan and Mark, Thanks for your kind comments. Mark, I read your column with interest in May, since it was also parallel to what we were trying to achieve in our household! Spring is lovely now, and it's great to be able to enjoy the outdoors.
I haven't found that handling these two diagnoses has been that much different than when I just had myeloma, since I was able to take a break from the myeloma treatments. After this latest round of dental work, however, I am hoping for a summer away from treatments! My dentist and his assistants are just wonderful, but even so, I did not realize in advance how having so much work done in a short period of time would affect me.
Nancy,
You are a real "trooper" and a real inspiration to all of us in Myeloma Land. Thanks so much for your uplifting words and good advice about simplifying our lives. When I was first diagnosed, I cleared out the house with unnecessary belongings. It has made life so much easier, but I find it is a constant
battle to clear clutter and not give in to accumulating "stuff".
Best wishes to you, Nancy. Love your messages.
Nancy,
I agree that the break from the myeloma treatments while dealing with a second cancer has been wonderful. My oncologist is pondering a treatment that will treat my myeloma and be effective as maintenance for my leukemia.
I certainly have been enjoying the spring blooms more this year until the last few days when the temperature rose into the 90's. UGH!!!
Keep moving forward with the joy of life that you have.
Fondly,
Nancy in PA
Thanks Barbara, It's difficult to remember sometimes that if you buy something new, you should give something away (this only applies if you already have enough stuff!). My craft supplies pile up on me, since I never have as much time to work on those as I think I will have! I still have more work to do on 'de-cluttering' though. Thanks for being a good reader. I always read the Beacon too since I am constantly learning more.
Nancy, I hope that your oncologist can find a treatment that will work for both of your blood cancers. Sounds like you are in really good hands in Philadelphia, with a highly regarded research centre and hospital. Best wishes to you. I think that your posts to others regarding your background as a physiotherapist are very helpful too.
Hi Nancy,
I always appreciate your column. The issue of second cancers is an important one for multiple myeloma patients, and it's very helpful that you share details about your treatments. Your positive attitude is inspiring. Thank you! Wishing you the best.
Thanks Sylvia, and I am glad that you appreciate hearing details about my medical journey. Considering that approximately one out of nine women will experience breast cancer in their lifetime, I think that we should demystify what is involved with the treatments. It is multiple myeloma that is the rarer disease, and less well known, actually!
You go, girl! Enjoy your spring, and especially the time with your hubby. Multiple myeloma as well as other cancer treatments are on a fast track. Every day counts and gets us closer. We all only have one life - live! My prayers and thoughts are with you. I've had multiple myeloma since 2009 / Revlimid maintenance for the past year. Warmest regards, John
John, thanks for the well wishes. Every day is special and I try to use my time wisely, especially considering that I am living with myeloma. (My husband is also living with my myeloma, which is a real caregiver's role!) Hope you are well also, and tolerating the maintenance therapy well. I also was diagnosed in 2009, so that's a coincidence!
Dear Nancy,
I am so glad that you continue to enjoy a break from multiple myeloma treatment because the Revlimid and dex have definite side effects. You sound like you are making the most of the spring even though with our aging bodies the work sometimes takes too much time.
A personal note is that my recent mammogram was negative and I thank you for that reminder. I am now on the schedule for yearly checkups
Enjoy the spring, time with husband, and holidays from illness.
Maureen
Thanks Maureen. After your last column, I went out and put peony rings around my peonies! We have had lots of sun and rain, and they are coming up well, not flowering yet though. So glad to hear that your mammogram tests came out as negative. I will be getting those tests every six months now. I am grateful to be so well monitored for my health, although sometimes it is a little unnerving to realize what all of my blood tests and other tests are being done for! When I tell my friends that I am now a survivor of two cancers, they are a little taken aback!
I look froward to reading your columns and hope that you are doing well.
Hi Nancy, To echo what a lot of others have already said, I can't imagine having two cancer diagnoses to deal with! You are really doing wonderfully to cope so well. I'm glad you've been having an enjoyable spring with all that going on.
Thanks Trevor. I feel fortunate in that I could go off the myeloma treatments in order to have the breast cancer treatments. I think it would have been much more difficult to have been on treatments for two cancers at once. So sometimes fate takes a turn one doesn't expect. If I hadn't been so thoroughly treated for the myeloma over the years, I don't think I could have taken this break. I am still on a break from meds, except for the aromatase inhibitor, which doesn't seem to bother me too much. It may cause aches and pains, but I already have those due to injuries I sustained at the time of diagnosis, so that doesn't impede me much.
Hi Nancy. I don't often post comments, usually because everyone else has already said what was on my mind by the time I read the columns. You are my exception.
I went through my first breast cancer in the late 90s. It was in my left breast and was caught early, so all I needed was radiation. I got my second breast cancer in 2011 and it once again was in my left breast. It was triple negative so my prognosis wasn't good. I had to have a mastectomy since I had already had the breast radiated. My combo treatment was Cytoxan and Taxotere. After my third treatment, all I could do was cry knowing I still had three more treatments to go through. It was hell. The good news is that I've passed my five year anniversary, so that means I'm now in the "normal" category for breast cancer patient survivors.
I know how it feels to always have the blood drawn from the right arm now that I no longer have lymph nodes on the left side. Phlebotomists look with envy at my left arm that has huge veins as they struggle to squeeze a needle into the left side veins. They usually grab the smallest needles they have in stock to draw blood.
Since my breast cancer seems to be under "control", I've been able to concentrate on my multiple myeloma. I've had two stem cell transplants, had a two-year hiatus after the first one but unfortunately have to do maintenance therapy since the second transplant wasn't as effective as the first. I have chromosome abnormalities, including deletion 17, so I'm on Ninlaro and dex for now. I ask for pills for my treatment because my hubby and I bought an RV and travel around the country while I still can.
I mentioned that I lived through hell during my breast cancer treatment; but it was worse than that when I went through my first transplant. I will admit that at one point I thought I'd be better off dead. It was with real trepidation that I went through the second transplant. For some crazy reason, I breezed through it. Just purgatory rather than hell.
Please keep us posted on your breast cancer progress.
Thanks so much for sharing your story, Laverne! What you have been through is very intense, double than what I have, I suppose. Twice for breast cancer treatments, and two stem cell transplants also! I hope that you don't need any more really intense treatments and can stay just with maintenance treatment. It is nice that you can have an oral proteasome treatment, so that you don't need to go to a cancer centre for injections also.
I didn't have the chemo for my breast cancer since it was caught really early and there was the sense that I had already been through enough with the stem cell transplant and other chemotherapy for myeloma. (So I did not lose my hair again. I saw others wearing wigs and turbans though at the radiation unit waiting room.) I will be soon at a one year anniversary of that diagnosis. The last time I went in for a blood draw the lab technician took it from a vein on the back of my right hand...I still have good veins there. They knew right away not to take it from the left arm due to having lymph nodes removed for testing.
Well, enjoy your travelling, and enjoy all that you see! I was out in the countryside last weekend, driving to a fibre arts workshop, where I took a class on Metis beading. Driving north I saw many green fields, beautiful clouds, and then Canada geese and their young goslings on prairie ponds. That was special. Best wishes!
Nancy, You sure have been through it this year! I don't know how you do it! You keep writing your wonderful columns and doing the things that need to be done, despite your busy treatment schedule. I hope that you get some relief in the days and weeks ahead, and that your myeloma won't relapse anytime soon - you've certainly seen enough of your treatment center lately! Hang in there!
Thanks Tabitha, I am enjoying summer and thankfully seem to be down to fewer trips to the specialists. That's good, for I really do have a full life, and want to be there for that, as strongly as possible!
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