My Journey -- Ken McClintock

Hello everyone. I want to thank all of you who have been so thoughtful in answering my questions and providing your support. It really does help to know that others have dealt successfully with the same issues.

I moved to Singapore in 2006 to work on a project. I remained in good health and led an active lifestyle until early August of this year, when my journey began. I had become increasingly bothered over the previous eight months by a longstanding sciatica issue. My regular doctor suggested physio which I tried on a couple of occasions but was never convinced that it had any long term benefit. On the recommendation of someone in my office, I went to see a local Chinese doctor schooled in Traditional Chinese Medicine (TCM) and western medicine. He was supposed to be a bit of a miracle worker, and quite a character. A character indeed he was. He reminded me a bit of the nutty professor. His advice was to sit up straight, stand up straight, don’t drink tea or coffee, breath deeply……and get an MRI done!

He arranged for an MRI at a local hospital within the next week. What started off to be what I had thought was a routine MRI to identify which vertebrae was causing the sciatica issue, turned out to be a horrible shock. I was told that I had a tumour on my lumbar vertebrae! My vision of a long and happy retirement immediately vaporized!

Following consultation with my regular doctor, I was referred to an orthopaedic surgeon at the National University Hospital (NUH), a large teaching hospital here in Singapore. I was admitted to hospital the next day and underwent a series of tests.

Within the next week, I was redirected to a haematologist/oncologist, as the results of the blood work (and other factors) pointed to MM. Additional blood testing and a bone marrow biopsy confirmed the diagnosis (stage II MM) by the beginning of the next week, at which point I was started on my treatments. The entire process following the first “routine” MRI took two weeks! I was certainly grateful to have been able to get that level of care and service in such a short period of time. As it was, waiting to hear the outcome of the tests within those two weeks was difficult.

My treatments included Dexamethasone, Thalidomide and Velcade, with a host of other peripheral medications to address the side effects, as well as Pamidronate every five weeks. No action was taken related to the lesion on my vertebrae. The consensus was that it would heal itself. I ended up in hospital three times, twice for high fever (38.8 deg) and once for blood clots. Now, after three months of treatment, I am experiencing significant neuropathy.

The good news is that a recent Myeloma panel indicated that I have achieved nCR! Although I will continue with one more cycle of Velcade, my doctor has stopped the Thalidomide. Following my final Velcade cycle, I will also discontinue the dexamethasone. So I should have a good Christmas.


The medical attention I have received in Singapore has been wonderful. The facilities are modern, and the doctors (many trained in the West) and nurses are professional and up to date on latest treatments. Even the hospital food is good. I had three choices each from a Chinese, Western and Muslim menu, for each meal! To top all that, my doctor gave me his cell phone number and told me to call him anytime (24/7), even when he went on his vacation!

Based on my experience to date, I plan to have my stem cell transplant in Singapore. It is planned for February, with collection in January. Following recovery, I will move back to Halifax and enjoy life! I will keep you posted on the progress.

The Multiple Myeloma Handbook for Canadians

The Multiple Myeloma Patient Handbook is available through Myeloma Atlantic FREE of charge and you are invited to request one by sending your request to myelomaatlantic@mailfire.ca.

Please include your name, full mailng address, telephone number. Right click the cover of the book above for a full view of the Handbook. Tell us what you think of the Handbook by making a comment. People tell me they love it.

Ken in Singapore

Ken is a Canadian working and living in Singapore where he is undergoing treatment for multiple myeloma. I have asked Ken to stay in touch with us regarding his treatment and his needs. Here's what Ken had to say in a recent email:

Hi Frank

I will be pleased to provide input to the blog as requested. I might pass it by you first to get your feedback on it before posting. As a clarification, I wanted you to know that I did not travel to Singapore specifically to be treated for MM. I came here to work in 2006 and was diagnosed whilst I was here. I did, however, make the decision to remain here for treatment, instead of returning to Canada, which I will address in the writeup.

On another note, I am trying to get an indication of the impacts I can plan for following Stem Cell transplant. I believe I will be in the hospital for about 3 weeks then will be on watch for about 3 months. I then plan to return to Canada afterwards. But I would like to know if there will be a gradual recovery after leaving the hospital (ie…will I be able to golf, exercise, lead a pretty normal life) within one two or three months etc.

I don’t seem to be able to find anything on the websites to help. If you think I can get a response from the blog, I will post it there.

Thanks & Regards Ken

Here's what I wrote back to Ken:

Hi Ken,

I am so pleased to hear from you and that you will provide input; it will be helpful to others as well as yourself. The questions you have posed are great ones. I am told that golf for example is too hard on your bone structure, exercise is encouraged. If you have an lytic lesions those bone structures can be compromised going forward as in the case of my right arm which I lost the use of but which now is back but not as strong as before.

As regards recovery the best approach is not to expect too much from yourself, just ride with it. Your CBC blood counts will be important and at first you can expect to have them monitored daily. At first you will be very weak and you will hope to God that period will pass and it will. My transplant was done in January this year and since July I was back to work full time but I am not typical. You will learn there is nothing typical about MM every single one of us is different. Do you have a caregiver? If not get one as there will be times when you will not be able to think properly. Are you on your own, or is there some one with you, you can trust? This is important.

I need your mailing address I can send to you the Canadian Multiple Myeloma Patient Handbook if you do not have one already. I am sure you are familiar with the International Myeloma Foundation website: http://www.myeloma.org/. You no doubt have the Canadian counterpart Myeloma Canada: http://www.myelomacanada.ca/.

There’s a great site on what you can expect from the chemo impact on your body. One I know to be excellent is: http://www.chemocare.com/. Ken for side effects after transplant please review: http://www.cancerbackup.org.uk/Treatments/Stemcellbonemarrowtransplants/Sideeffects/Sideeffects.

If you are going to be using Neupogen in the collection stage you might want to know about it, here’s a site that might help:

http://chealth.canoe.ca/drug_info_details.asp?channel_id=0&relation_id=0&brand_name_id=3490&page_no=2#AdverseEffects.

Start with this and if I can help in any other way I will. Regarding your postings, send them to me by email and I will post them for you in your own words in a full page or pages. Members have expressed concern to me about you being away from home and they want to help. Some may have emailed you already, I hope you don’t mind they want to follow your treatment to make sure you are safe and they also will lend assistance where they think they can. They need to know what’s happening with you, so keep your postings coming.

Whenever you are ready I’ll post your comments, observation and plot the course of your recovery and I know they will post thoughts and considerations to help you or they will email you directly. I hope this is helpful.

All the Best,

Frank

If anyone has further suggestions for Ken please post as a comment below or email them to me and I will post your comments or suggestions on a page.

Approach to Multiple Myeloma - The Canadian Perspective

By

Dr. Donna E. Reece,

Princess Margaret Hospital, Toronto, Canada

Every year, about 2,000 Canadians are diagnosed with multiple myeloma (4 per every 100,000 people). So we estimated that in any year, about 6,500 people are living with this disease. The median age of multiple myeloma patients is about 65 years, although its incidence in younger adults appears to be increasing.

There are a number of factors which determine which drugs are available in Canada for treating multiple myeloma. First, to be used in Canada, the drug must be approved by Health Canada as safe and effective. Second, in order that people can access the medication, there must be funding by the provincial health insurance programs. Myeloma drugs currently approved for use in Canada include melphalan, cyclophosphamide, bisphosphonates (pamidronate, zoledronic acid and clodronate), Velcade (bortezomib) for front-line combination therapy or second-line therapy and lenalidomide (Revlimid). Thalidomide can be obtained through special access programs.

Traditionally, initial therapy for multiple myeloma has been to decide between autologous stem cell transplant (ASCT) or melphalan and prednisone. Editor note: See Table summary above (Right Click Image above to Enlarge) The paper was presented at the Ortho Biotech Multiple Myeloma Patient Advisory Board Conference at the past weekend in Toronto, Ontario. Address your congratulations to: the Manager National Community Relations: Ms. Sue Robson, R.N. at mailto:asrobson@obica.jnj.com

ASCT Eligible Patients:

New approaches before ASCT are being investigated to see if achieving high rates of CR/nCR or VGPR (very good partial response) prior to transplant will improve outcomes. Multiple induction regimens containing novel agents are being tested. Canadian trials include DBd (Doxil + Velcade + dexamethasone) and CYBORD-D (cyclophosphamide + Velcade + dexamethasone).

Studies are also under way looking at the best way to treat patients with specific genetic mutations. The translocation t(4;14) mutation, in which parts of chromosomes 4 and 14 incorrectly attach to one another, occurs in 15% of myeloma patients, frequently among younger individuals with the IgA lambda subtype. It is often associated with another genetic mutation (13q deletion). When this mutation is present, although the myeloma may respond well to therapy it also relapses quickly, which makes it an aggressive disease to treat. In cases of relapse, the disease appears to respond better to either bortezomib or lenalidomide. For this reason, a trial is currently underway among newly-diagnosed myeloma patients that involves induction therapy with bortezomib, doxorubicin and dexamethasone for 4 cycles, followed by CYBOR-P for 8 cycles and dexamethasone maintenance therapy. ASCT is not performed as part of initial therapy in this trial, due to the strong activity of Velcade in this subtype of myeloma. Another mutation that is currently being studied is TP53, in which a copy of a tumour suppressor gene is missing. TP53 deletion occurs in a number of forms of cancer, including myeloma.

"Transplant Uncertain" Patients"

A number of trials are looking at induction therapy in "transplant uncertain" patients. This approach most commonly has used continuous suppression with immunomodulatory agents (IMiDs, such as thalidomide or lenalidomide) and dexamethasone. The ECOG trial used thalidomide and dexamethasone; the overall response rate was 63% with a CR rate of 8% and the median time to progression was 22 months. The ECOG E4A03 study compared Revlimid and either high or low doses of dexamethasone. Although the overall response rate was better in the higher-dose dexamethasone group (82% vs. 71 %), there were also more early deaths. The optimal dose of dexamethasone, therefore, remains uncertain although we know that continuous full dose appears detrimental. In a small subset of patients in the ECOG E4A03 trial who subsequent underwent ASCT, results were similar between the two groups. However, it must be kept in mind that the comparison between Revlimid plus dexamethasone and ASCT was not studied in a randomized fashion.

Another approach for "transplant uncertain" patients has been the use of 6-8 cycles of combination regimens that usually contain chemotherapy drugs with novel agents such as thalidomide, velcade and/or Revlimid, followed by a treatment break. This approach has not been as well-studied, and the results compared to ASCT are unknown at present.

Melphalan-based Approaches

A number of studies have combined traditional melphalan + prednisone (MP) therapy with other agents. Three, including the IFM 99-06 trial, found that in elderly patients adding thalidomide makes the therapy more effective. In another trial, it was found that adding Velcade also increased the effectiveness of therapy, compared to MP alone. However, adding thalidomide or Velcade also increases toxicities or side-effects, such as low white blood counts, blood clots or peripheral neuropathy.

At this point, it's not known whether adding a novel agent (such as thalidomide or Velcade) is as effective as when you give it during initial therapy or later, after relapse. More evidence is needed on how to proceed with high-risk patients, such as those with specific genetic mutations. Recent Canadian trials include the NCIC MY 11
study, an Ortho Biotech trial of melphalan, prednisone and Velcade (bortezomib) and the Celgene MM020 international trial (comparing three regimens: lenalidomide + weekly dexamethasone until progression, lenalidomide + weekly dexamethasone for 18 months, vs. MP + thalidomide).

Summary:

New agents and combinations are becoming available for all age groups and are contributing to better survival for myeloma patients. The optimal approach for induction and disease progression has yet to be defined, however. We suspect that different approaches may be needed for different patient groups (e.g., those with and without specific genetic mutations). Research is trying to match the best therapy with the different disease sub-types. Funding limitations remain a problem; access programs and clinical trials are means by which patients may obtain new medications before public funding is provided.