frustrating

 I am just back from another stretch in hospital.  Pneumonia struck witrhin hours and I was taken by ambulance for a week long stay in the hospital. I guess rhis is what can happen when one if immuno compromised. It is frustrating and scary. I made it  through thanks to such care at the hospital and he prayers and words of so many of you. I made it home in time to celebrate my 70th.  Now to continue with masking and hand washing as we have been doing for years now. Thanks for your kind words posted here. Take care, Ed.

myeloma and amyloidosis update

It has been quite awhile since my last update ...

the journey continues ... pomalidomide and more

It has been a year and a half since I posted an update on life with myeloma. I am aware that others with myeloma are interested to know how things are going with my cancer journey. So here goes ...

pomalidomide (year five)

With Holy Week falling in mid-April this year it brings back memories of my initial diagnosis with myeloma and amyloidosis. I went for a bone marrow biopsy on Maundy Thursday, April 15. That was the final test that led to the surprising news that changed my life. At the time I was in shock and wondered what the future might hold. Eight years have now passed. After a series of treatments with varying degrees of success (autologous stem cell transplant, lenalidomide and bortezomib) I am now in my fifth year on a combination of pomalidomide, dexamethasone and cyclophosphamide. This continues to be very effective in reducing my free light chains and keeping the myeloma and amyloidosis in remission. We have made a couple of changes this year that have been beneficial ...

seeking the addition of kyprolis to provincial drug plans

As the only national organization uniquely devoted to the Canadian myeloma community, Myeloma Canada works to educate and empower patients, caregivers and healthcare professionals from coast to coast. I appreciate the information sharing and advocacy work of Myeloma Canada. 

Recently Canada's myeloma community has undertaken a drive to engage our local elected provincial representatives in conversation about the need for our provincial drug plans to fund the new drugs Kyprolis and Darzalex. Over the past years these two myeloma drugs have received approvals by Health Canada and positive recommendations for funding. On January 31, 2018, it was announced that pricing negotiations for Kyprolis have also been positively concluded. 

At this stage, it’s finally up to the provinces and territories to list Kyprolis on their public drug plans so that Canadians can access it. If you live in Canada please write your local MLA/MPP/MNA with a request that they advocate with their Ministry of Health for the funding of Kyprolis on the provincial drug plan. If you visit the Myeloma Canada website and scroll down the page to the section that is in red you will find a tool that will take you to your local provincial representative's contact information. It will also provide you with a sample letter. Thank-you for your help!


* * * Good news update on 30/04/18:  British Columbia and Manitoba have added Kyprolis to their public drug plans. The drug is now covered for relapsed myeloma patients in these two provinces. For those in the rest of Canada the need to encourage provincial governments to fund this drug continues. Residents of BC and Manitoba can thank their provincial governments for providing this care to those living with myeloma * * *

interrupted by pneumonia

Just when life with myeloma felt like it was becoming a predictable weekly journey with my medications pneumonia interrupted everything. It was a winter in which I seemed to  catch every cold that was in the air. That was the first clue that my immune system is not running at full capacity. Then February rolled around and a fever took me to the local hospital. Eighteen days later I returned home after a successful course of antibiotics. I see now why infections - and especially pneumonia - are dangerous for those of us living with myeloma. Our compromised immune systems make us particularly susceptible to these unwelcome guests. I am glad to be recovering strength and health as spring arrives here.

pomalidomide (year four)

Today I began my fourth year on pomalidomide in conjunction with dexamethasone and cyclophosphamide. The good news is that nothing much has changed since my last update in March 2017. At some point the monthly blood test results will reveal that this trio of drugs is no longer working but, for now, I am grateful that all continues to go well. The side effects of the drugs regularly cause me to feel lousy for a few days each week. In the weeks ahead I am going to try changing the day of the week on which I take my regular dose of cyclophosphamide to see if I can shorten the length of time that I feel "off" each week. April will mark seven years since I was diagnosed with myeloma and amyloidosis. While my doctor reminds me that the disease is in an acute phase the daily reality feels more like a chronic condition. Given the alternatives I am very fortunate, indeed.

pomalidomide (year three)

It has been ten months since my last myeloma update. That, in itself, is good news. This January I began my third year on pomalidomide. I continue to take this pill in conjunction with dexamethsone and cyclophosphamide and the results continue to be excellent. My monthly blood tests reveal that my free light chains range between 35 and 50. It means they are very low - nearly normal. This is good news for both my myeloma and amyloidosis. I am so very fortunate to have been diagnosed at an early stage before suffering any symptoms from my diseases and to be receiving such effective treatments. I could almost forget that I am living with an (at this point) incurable blood cancer ...

five years since diagnosis

This month marks five years since I received the word that I am living with multiple myeloma and amyloidosis. That was eighty-five myeloma related blog posts ago. The second of those posts was the sermon I preached on my first Sunday in the pulpit after my diagnosis - "What's Up" (a sermon for Ascension Sunday that named the new reality of my illness). You can follow the story of the last five years by clicking here - Myeloma posts.

Here's the latest update ...

pomalidomide (cycles nine, ten & eleven)

This week I began the twelfth monthly cycle on pomalidomide, dexamethasone and cyclophosphamide. Yesterday was in to see my hematologist for a regular visit. The good news is that there is nothing new to report since my last visit in August. All is continuing to go well. My blood reports show that the free light chain count has remained below 100 (going as low as 35, rising to 95, currently at 58). This means that the amyloidosis and myeloma is being well controlled by the trio of drugs. It also means that I continue to experience the side effects of the dexamethasone. As you know, it is not my favourite thing! But it is a necessary part of the treatment and the treatment is working.

Perhaps you have not heard the news that four new myeloma drugs have been approved for use in the United States this year. It is an unprecedented number of new drugs, with more on the way. It will likely be some time (perhaps a couple of years) before the drugs are approved for use in Canada. Once approved it is not certain that they will all be funded. While these new drugs hold great promise they are also very expensive. I hope that I will be able to have access to one or more of them in the future if, and when, I may need them. In the meantime, I feel very fortunate to be living with these diseases in the golden age of myeloma drug development.

pomalidomide (cycles seven & eight)

I was in to see my hematologist today for a regular visit. The good news is that the addition of cyclophosphamide to my treatment (in addition to dexamethasone and pomalidomide) has resulted in a significant reduction in my free light chains over the past two months. In June the free light chains were at 225, in July at 111 and this month at 80. We have been aiming at getting the number below 100 so this is very good news. It means continuing with the three drugs for the foreseeable future. Since the main side effects of this treatment come from the weekly dose of dexamethasone my doctor suggested that I try taking a half dose. I am hoping that this, along with more exercise and watching my diet, can help me cope with weight gain related to the dex. It is not guaranteed that I will experience a lessening of the side effects but it is worth a try. In any case, it is good to know that living with side effects of the medications is worth it ... that the drugs are having the intended effect on the myeloma and amyloidosis.

pomalidomide (cycle six)

I am concluding of my sixth month on pomalidomide along with dexamethasone and more recently also with cyclophosphamide. My latest blood results reveal that the treatment is holding my free light chain count steady (currently at 225). The flu-like symptoms (soreness & fatigue) I had been experiencing have recently faded and are less bothersome. I am hoping it stays this way! All things considered, the news is good as I head into retirement.

pomalidomide (cycle five)

This week I am completing the fifth twenty-eight day cycle on pomalidomide and dexamethasone. In the middle of the month I had my regular blood work which showed that the free light chains had dropped for the first time in a few cycles. They are now at 214. While this is good news the number is still higher than my hematologist would like in order to lower the risk of organ damage due to amyloidosis. He advises that we add cyclophosphamide to the treatment. This is in pill form, taken once weekly. I will receive a low dose and should not experience any additional side effects. I received cyclophosphamide for six months while being treated with bortezomib (Velcade) in the fall of 2013. The hope is that this will increase the effectiveness of the pomalidomide (Pomalyst) and dexamethasone. By the way, pomalidomide is now being funded by the BC government's cancer agency. Good news! In my case, I will continue to receive it through the compassionate access program of its manufacturer, Celgene.

pomalidomide (cycle four)

Yesterday I had my regular appointment with my hematologist. I am now nearing the end of my fourth twenty-eight day cycle on pomalidomide (two cycles at a low dose of 2mgs/day, now on to my second cycle on the regular dose of 4mgs/day). I have not had any of the signs of a bad reaction to the drug (which is related to lenalidomide, the drug that I could not tolerate in the spring of 2012). So far the blood tests have shown that the free light chains are staying fairly stable. While they have not dropped significantly (i.e.: below our goal of less than 100) they have also not gone up significantly (they are between 140 and 240 at this point). My doctor says that while he would ideally like them to be lower this is still a good result (given they were at 1600 when I was diagnosed and have been back up as high as 700 during the past few years). We will continue to monitor the free light chains and continue with pomalidomide so long as it can hold the free light chains relatively stable. The main concern is keeping the amyloids as low as possible to prevent amyloid disease from affecting my organs. Amyloidosis is a hidden disease that does not show itself until there is obvious organ damage. I am fortunate that we discovered this before any damage has been done as it has has given us the opportunity to undertake preventative treatment. It turns out that because amyoidosis affects so few people it is an orphaned disease in the research community where there is little incentive for researchers to invest time and resources into understanding and treating it.

I am to see my doctor again in three months. In the meantime, we will continue to monitor the free light chains with monthly blood tests. I will stay on pomalidomide (daily for 21 out of 28 days) and dexamethasone (steroids every Monday). The main side effects continue to be the weekly roller coaster ride on dexamethasone, along with weight gain. While I am not thrilled to be living with steroids I am grateful that, along with pomalidomide, the steroids are controlling the production of amyloids in my blood and that this is lowering the risk of suffering organ damage that would bring with it much worse symptoms.

pomalidomide (cycle two)

First off - for those who can catch it later today the Multiple Myeloma Research Foundation is live streaming the concert "Cancer Blows" from Dallas, Texas. Here is the link. Ryan Anthony, Dallas Symphony Orchestra principal trumpet and former member of the Canadian Brass, was diagnosed with Multiple Myeloma last year. This concert brings together many trumpet players in raising awareness about the disease as well as fund-raising for research into treatments for multiple myeloma.

On more mundane matters, I am coming to the conclusion of my second twenty-eight day cycle on pomalidomide and dexamathasone. Cycle three begins this coming Monday ...

in the woods

It is Lent and for Christians it is a reminder that Jesus spends forty days of temptation in the wilderness before he begins to witness to the nearness of God's realm, God's kingdom come on earth as in heaven. For a biblical people the wilderness is rich with memory of fleeing from oppression and longing for the land of milk and honey. Here in British Columbia, the wilderness means the forest. Those of us who live in and around Vancouver are all too familiar with the regular news reports of travellers who go for an afternoon hike on one of the local mountains and do not return. We are constantly reminded that just out our back door is a wild and dangerous back country full of steep terrain in which cell phones have no reception. It is easy to imagine that the wilderness is held at bay by contemporary comforts and protections. But, then, it turns out that the woods are very close at hand ...

pomalidomide (cycle one)

My new treatment regime is underway. Yesterday I began the second twenty-eight day cycle on pomalidomide (Pomalyst) and dexamethasone. I had been scheduled to begin in December but asked my doctor for a reprieve until after Christmas. He agreed and this allowed me the freedom to carry out my Christmas duties as minister and grandfather without worrying about side effects from new medications. Speaking of side effects, I have only noticed one caused by pomalidomide - a very itchy scalp for a few days during the first week in the cycle. Other than that, the side effects I have been experiencing are the familiar roller coaster ride that results from taking 40 milligrams of dexamethasone on days one, eight, fifteen and twenty-two (I take pomalidomide daily on days one through twenty-one). Those ten steroid pills every Monday morning lead to two days of manic energy followed by two days of bleary fatigue. My best days are on Fridays, Saturdays and Sundays. It is good to be feeling better on the weekends and especially good to know that I will be at my best for worship. It will take a while to determine if this dosage of pomalidomide will work to lower my free light chain count. We have begun the treatment with half of the usual dose (2 mg instead of 4 mg) because of the bad reaction I experienced when taking lenalidomide (Revlimid). As the two drugs are related it is possible that I could have a similar reaction once again. However so far, so good. If all continues to go well we will watch the monthly blood tests in order to determine if it is wise to try raising the dosage. In the meantime, my family and my congregation and I will continue to adjust to my weekly ride on steroids. I am grateful for everyone's patience with me through it all. And I am doing my best to be patient with myself as well.

on to pomalidomide

Last week I was in to see my hematologist for my fall appointment. I have been enjoying being free of chemotherapy and steroids since concluding treatment with Velcade in mid-February. During that time my free light chain count has remained quite stable. In the past month the free light chains have begun to rise once again. My doctor advised applying for the compassionate access program provided by Celgene for the recently approved (in Canada) chemotherapeutic drug pomalidomide (trade name Pomalyst). While it is approved for use in Canada it is not yet funded by our health insurance. As I have received the other available treatments (autologous stem cell transplant, lenalidomide and velcade) I am eligible to receive pomalidomide through the passionate access program of its manufacturer. The application was submitted this past Friday and approved yesterday.

continuing good news

There is continuing good news further to the good news health update from two months ago. Since then monthly blood tests have shown that the protein free light chains are remaining relatively stable. It means no need yet to begin a new set of targeted chemotherapy along with a return to the steroid dexamethasone. This summer without treatment has been a real gift. Now my final autumn before retirement is beginning chemo-free. I am aware that one day the news will not be so good. In the meantime, I am grateful.

By the way, September is Blood Cancer Awareness Month. In gratitude I am making a donation to continuing blood cancer research. You can make a donation through Myeloma Canada, the Leukemia & Lymphoma Society or by specifying the blood cancer clinical trials program at Vancouver General Hospital. Since I will one day likely participate in the clinical trials at VGH I am sending my donation there.

good news health update

I was in to see my hematologist this week. My last appointment was in early March. I have been off of targeted chemotherapy (bortezomib) and steroids (dexamethasone) since mid-February. In the meantime, my free light chain count has risen slowly (up from 100 in mid-February to 178 currently). The doctor does not think that this warrants beginning the next treatment at this time. Yay! He is thinking that when the count is closer to 300 we will start with pomalidomide and dexamethasone.