Northern Lights: A Crash Course In Multiple Myeloma And Initial Chemotherapy
In mid-August 2009, I received the diagnosis that I had been dreading and hoping against hope was not true: multiple myeloma. I realized later that if my diagnosis had been put off much longer, I could have been much worse off, but at the time, it was still very upsetting.
My husband Dilip and I started to digest a whole lot of information about multiple myeloma. I felt like I was in a crash course of cancer education; we went through pamphlets provided at the cancer center, textbooks on cancer, books on multiple myeloma, and material that we found exploring Internet sources. The course was supplemented by conversations with my doctors.
Educating myself helped me to fend off the feelings of fear and uncertainty about my future that kept welling up in me, threatening to make my waking hours a nightmare.
The frightening aspects of multiple myeloma to me were how short the survival time might be in years, as well as the terrible physical toll it could take. Broken bones were only one problem; many patients have far worse problems than I had yet encountered.
However, since newer and more drugs were available than ever before or in the process of development, we held out hope that the future was getting brighter for many.
Very soon after my diagnosis, I found myself taking intravenous Aredia (pamidronate), a bone building medication, and oral dexamethasone (Decadron). I was scheduled to start ‘induction chemotherapy’ with Velcade (bortezomib) at the end of August.
All three drugs are interesting in their own ways.
Aredia, a bisphosphonate, is a bone building medication given intravenously. It helps to prevent fractures, spinal cord compressions, as well as normalizing the levels of calcium in the blood and reducing bone pain. It was the reduction of pain that I first noticed. It was a relief to feel that my bones were healing. Apparently Aredia is about 100 times stronger than Fosamax (alendronate), which I had been taking previously for osteopenia, or low bone density. Perhaps my bones would heal and my osteopenia would not worsen. Was it just the myeloma that was eating up my bones?
Dexamethasone, a cortico-steroid, is used to augment the response of another chemotherapy agent. The first thing I noticed about dexamethasone was that it helped me with my back pain. When I took it, the pain almost disappeared. When the effects wore off a couple of days later, I was stiff and sore again. However, I still needed to take Tylenol 3 (acetaminophen/paracetamol and codeine) tablets at night for pain.
The drug also affected my mood: I was generally high and energetic to the extreme while I was taking it and then crashed down to a low level of mood and energy when it wore off. The restlessness I experienced from taking it would keep me up at night. I felt like e-mailing people very late at night but I avoided doing this, since I didn’t want to set off too many alarm bells. Also, I suddenly had a great appetite and wanted to snack a lot. I had to limit the type of foods in the house at the time.
The third drug, Velcade, was the one that was supposed to take care of the myeloma. In our area, Velcade was approved for use in late 2008, less than a year before it was prescribed to me. .
On my first visit to the cancer center for intravenous treatment with Velcade, I was surprised to see the infusion room filled with so many patients. Later I learned that they were there for a variety of different cancers, not just multiple myeloma. Up to 70 different types of chemotherapies were available and administered there.
While I settled into a reclining chair, a nurse brought over a stand from which hung bags of a saline solution and Kytril (granisetron), a powerful anti-nauseant. After first heating up the skin with a hot wet washcloth, she inserted a needle into the back of my hand. I tried to focus on all the times I had had needles inserted as a blood donor to calm myself. Otherwise, I really felt out of my depth, taking such strong medicine.
The Kytril slowly dripped through the tubing, followed by the Velcade, which was injected into the IV line over a period of about 10 seconds, and the saline solution to finish. To my surprise, the whole procedure did not take very long. Unhooked and sporting a new bandaid, I was on my way home an hour later.
The first thing I noticed about Velcade was that it made me really tired.
So here I was feeling a wide array of different side effects: dex was jazzing me up and then casting me down, Velcade was tiring me out, and Aredia and dex were easing my back pain. It was a mixed bag of effects, and not a ‘normal’ time at all!
While I started the chemotherapy, our two daughters also informed themselves of the research and treatments and were always supportive.
Friends began to hear of my diagnosis, and we were flooded with calls, cards, visits, and bouquets of flowers, cookies, and meals - even a basket of delicious cheeses! Homemade soups from a neighbor were put into the freezer for ‘chemo’ days. My two sisters and my mom came in from their homes in British Columbia for visits. My brother and his family, including our two young nephews, appeared regularly to cheer up ‘Aunt Nancy,’ and my dad and my step-mom were always available for taking me to appointments.
Even with all the emotional and practical support and the reassurances that treatments were improved now for multiple myeloma patients, we were still very apprehensive. We hoped and prayed that the trio of treatments would be effective against the runaway myeloma.
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The quotation for this month is from Paracelsus (1493-1541), who wrote, "Since nothing is so secret or hidden that it cannot be revealed, everything depends on the discovery of those things that manifest the hidden."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Hi Nancy: Thanks for sharing. It all sounds so familiar. From the Northern Lights reference and British Columbia I suspect you are a fellow Canuck. I am resident in the US and being treated for my myeloma at UAMS. Recently, I met a wonderful couple from Canada, she had the myeloma, who were treated at Princess Margaret in Toronto. She did not not respond to the "standard" meds and was recommended for hospice care. They learned that there were newer medicines available but unavailable in Canada.They then journeyed stateside for treatment...with the added expense. The meds worked and she, in her forties, is doing well with her myeloma in remission. I hope that your myeloma can be treated with the socialized medicines options available north of the border. I look forward to reading more about your experiences.
Nice to hear a positive, matter of fact description of something I may have to face in the future..
Hi Gary and Ralph!
Gary, I am Canadian which I am sure is obvious from my experiences and point of view. I do really like the opportunity to learn and share with folks outside our borders...that's the beauty of the internet age we live in I think. Thanks for sharing the news of your friend...the Princess Margaret has a myeloma research/oncology aspect to it I know. I am glad to hear that your friend is doing well now though. Of course, having read a lot of news on the Beacon, I am aware of such treatment centres as the UAMS. Are you doing a double transplant as part of your protocols? Yesterday, while reading the book 'Dr. Folkman's War', I came across the news of how Dr. Barlogie first realized that thalidomide might inhibit myeloma, and did do the first clinical trials on that. This was only as recently as the late 1990's! Thalidomide was also being used to inhibit macular degeneration...a problem of vascularization. Anyways, there has been such a lot of progress made in treating our particular sort of cancer that we have better hope now than before. Best wishes to you....I am happy with the medicare system here. So far it has worked well for me.
Ralph, I can now be 'matter of fact' since I am nearly three years on from that initial diagnosis and treatment. Hope all your medical issues go well....are you at the MGUS stage?
Nancy, I hope you feel well and continue to do so for many decades to come. I received my diagnosis in November but am not ready for treatment yet, it is good to hear what the future may hold for me and hear some effects from a real patient and not a website. Thanks
Thanks Christine...I do feel well and am enjoying life again...(I do wish it would quit snowing here though...big fluffy flakes making the roads nearly impassible!!). I appreciate the Beacon's editorial staff encouraging me to write...it's an honour really...and thanks to Maike and Boris for their strong editing skills!
I hope that your diagnosis leads to successful treatment, which is tolerable for you too. It is not easy to have to undertake these journeys into uncharted waters of one's health, but at least we have good health care treatments nowadays, and the support of others along the way!
Nancy S. thank you for your timely column. I found out yesterday that I am no longer "smoldering" and will have to make some tough treatment decisions. We have been doing the "watchful waiting" while I was in the SMM status for 2 yrs. I have had CMF chemo before with breast cancer 15 yrs. ago. I am curious how the MM chemo treatments compare to CMF?
I find the columns like yours about initial treatment and diagnosis helpful since I am at that stage myself. My doctor has assigned a medical social worker to coordinate my care. I live alone so I may need additional home aid or assistance during chemo treatment phase.
Hi Nancy...sorry to hear that the 'smouldering' phase has now progressed. It's good though that you have the opportunity to treat the myeloma before you get a lot of physical damage. i haven't had another cancer but one thing I did notice when I was getting my 'aredia' drips was that there were also breast cancer patients taking that medication. Their cancers had spread into the nearby bones, so in that regard we had a similar problem.
It's a cliche, but taking 'one day at a time' is probably the best way to get through the treatment phase. If you can get extra help at home during your treatments, I would definitely go for it. It will make your life easier, and you can focus on getting to all the appointment, getting extra rest etc. At our cancer centre, there is a whole cadre of 'volunteer drivers', who are mostly retired chaps who kindly drive patients back and forth to app'ts. There will probably be times when you don't feel up to driving, and they are happy to help. Otherwise, many patients have a family member or friend with them to help with getting to the centre.
Hi NancyD,
What's CMF?
CMF = cyclophosphamide, methotrexate and fluorouracil;
"CMF chemotherapy is used to treat people with primary breast cancer. This is breast cancer that is confined to the breast and/or in the lymph nodes under the arm and has not spread anywhere else in the body. It may be given after surgery, this is known as adjuvant treatment."
Ahh, thanks TerryH
NancyD,
One thing is that MM therapy is far less toxic than CMF, particularly with regard to hair loss. Most MM patients do not incur hair loss, which is primarily seen with alklylators, such as cyclophosphamide (mustargen gas derivative) along with myelosuppression. Whereas, methotrexate and fluorouarcil are antimetabolites and antagonists of folic acid /pyrimidine, respectively and can cause severe myelosuppression along with GI toxicities.
So the side effect profile with the new agents, bortzemib, dexamethosone, lenalidomide is much better. The things these agents tend to do is cause peripheral neuropathy, steroid mania and myelosuppression respectively. However, if a MM patient takes melphalan (mustargen case derivative) in preparation for a stem cell transplant..they can incur hair loss, nausea/vomiting, mouth sores and severe myelosuppression.
Overall, I would say that MM therapy is a lot easier on patients than the CMF therapy.
Hope this helps.
Hi TerryH and Suzierose...thanks for the info about CMF. I didn't know anything about that therapy, but in the overall scheme of one's health, the medical history is important too! Hope that you can get the right sort of treatments sorted out with your docs, Nancy! Really best wishes to you!
Hello from Arizona Nancy, I was diagnosed in 2009 with smoldering MM.It was by accident as I was suffering with frequent gout attacks..This began my journey..Fortunately I got into a clinical trial at the NCI located in Bethesda Md.I have Ola Landgren as my doctor. But what I'd like to say to all of the MM sufferers, is to attend conferences. I'm lucky enough to be in Arizona and close to California where in the last year and a half I've been able to speak one on one with some of the best in the world. These Myeloma pioneers were eager to look at my tests and give their opinion generously..Some of these kind people were Dr.s Kyle, Kumar,Stewart,Mikhael from Mayo. Dr.s Christina Gaspretto from Duke, Jatin Shah from M.D.Anderson and the entertaining Bart Barlogie from UA.I'm presently being monitored in Bethesda every 3 months..I have a 20% cell count as of a year ago but the M-spike is low and free-light chains are normal along with no C.R.A.B. I have IGA Kappa Myeloma.I was also invited last month to a physicians conference although I'm a layman because of the extensive study I did on this disease..I would advise everyone to do the homework, talk to the NIH,NCI in Bethesda Md. and seek out the very best as listed above..Most of all get as many opinions as possible as if I listened to the local Oncologist I would have started unnecessary treatment that all the experts listed above said would have been ill-advised..Best wishes to you and all the fellow sufferers..Ralph
Hi Ralph...sounds like you have really done your homework! Thanks for the encouragement to attend conferences...I have done that too, although locally, and attended talks and talked with specialists in 'our' field of myeloma. It is reassuring to discuss these problems with others who have the knowledge that study and experience has brought. I am also now being tested every three months, and that gets a little stressful at times at the end of the period of time, but it is necessary medically. I think that patients who know they have SMM seem to have the most choices available, as to when to start treatment, what and how much! Wishing you all the very best in this challenge.
Suzierose and TerryH - Thanks for the clarification and information. I dreaded MM chemo after having had the heavy doses CMF chemo for invasive stage 3 comedo breast cancer. I am relieved to hear this is a less toxic form of chemo for MM.
Nancy S. - Thanks for your ongoing supportive information. All of the Beacon writer's stories are so helpful in sharing information.
Nancy,
I started 2012 just out of SCT and free from induction chemotherapy. Your experiences were very similar to mine last year. I had a vague notion of what infusion rooms were from reading about them in Lance Armstrong’s book years earlier. I remember sitting in the chair during my first visits taking in all that was going on around me and wondering how it was I got here. I shouldn’t be here.
When I started Dexamethasone I would not sleep for two days and I spent many a night up emailing, playing XBOX, and other things to trying to pass the time. I became really good at Call of Duty on XBOX. Eventually I adapted and was able to start getting a few hours of sleep on the second night and even on the day I took them.
Hi Eric...glad you have found the Beacon's interactive website. it is such a great resource for all of us. I have learned a great deal from reading (and posting!) here. Hats off to the editors and sponsors who keep it all running, from behind the scenes. it is so helpful to be able to compare and contrast experiences, treatments, research ideas and the like. One concept that I take from it also is that this is still a new field of medical research, and perhaps those of us who have been more fortunate can contribute to the advancement of the field somehow. I know this may sound corny, but it works for me! And we may need more help in the future too.... but I will get off my soapbox now!
I read Lance Armstong's first book too, many years ago. What a dynamic individual who has done a lot to help cancer patients.
Nancy S., Another wonderful, insightful column..I am on the same "track" as you, apparently, only a year later than your diagnosis. Looking forward to your next posting to see if Revlimid was added to your treatments. The Dex seems to affect all of us the same way..I wrote emails at 2:30 in the morning...and nearly finished a book I was reading at 3 a.m. and had to MAKE myself turn out the lights!!! Ditto on the appetite..then all crashed down when the Dex wore off, tired, irritable..only to start the merrygoround again. I had Velcade subcutaneously right out of the gate, greatful for that as my veins do not cooperate w/ IV needles. Aredia, for some reason, caused my bones to ache more (happens to some of us). Now, I am in the midst of SCT protocol..so off the reg. MM drugs (tame by comparison to what I must endure now), have the Hickman Cath..and hoping for similar good results you have achieved. HOPE is the moon we hang on..I hope for positive outcomes for all of the writers, trying the novel agents and treatments, etc., all around our country and to our neighbors up north...Thank you all for your heartfelt insights and good advice..Knowledge is vital for us "MM'ers".
hi Patricia, I am glad that we have the Beacon in which to share our experiences and knowledge too! I love your phrase 'hope is the moon'. have been enjoying a trip to San Francisco and appreciate you help in navigating around here. yesterday, climbing up and down the steep hills to Coit Tower, a wonderful lookout to the awesome Pacific blue, I could reflect on the fact that back in 2009 that would have been way beyond my capabilities. modern medicine in all it's complexities, has given me extra time to enjoy with my family and friends, and I give thanks for that!
I hope that the rest of your stem cell harvesting and your SCT go well, without incident. it's
Great that withh subQ velcade you have managed to avoid neuropathy thus far.