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.
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5 comments:
Hi Ken...I also have had a transplant..and the advice that Frank has given you is excellent..
I am the support group leader for the Southern Alberta Myeloma group, based in Calgary.
One thing...about Golf...if your bones are ok...You can golf...we havr a couple of members in our group who live to golf and they are!!!
We also have a member who's vision to ride his Polo pony got him thru everything..He is now riding his Pony!!!
Life with Myeloma can be challenging and as Frank says it is different for each Warrior....but there are also many blessing that can come from the life change!!!
Good luck to you..I will hold you in my heart!!
Gentle Hugs...
Carol
This just in for Ken...
From: ninaandfrank@aol.com [mailto:ninaandfrank@aol.com]
Sent: November 19, 2008 3:36 PM
To: frankboyd@airfire.ca
Subject: Re: Response to Revlimid Advocacy Campaign
Hi Frank...I'm the other Frank (I am the caregiver, my wife Nina is the
patient)
You might want to pass this on to Ken.
Nina was diagnosed with MM on her 65th birthday. As a non-secretor, she
was 18 months before being diagnosed. By that time she had incurred
significant lytic lesion damage, particularly in the vertibrae. From
the resulting compression fractures, she ultimately lost 5 inches in
height.
She followed the usual treatment regimen...VAD, followed by a stem cell
transplant about six months later. She also was about six months to
return to "normal". The cancer returned 19 months later and she went
on Velcade/Cyclophosphamide/Prednisone. She got a great result from
this and is now over two years in remission. The only medication now is
Pamidronate, now administered quarterly, and Hydromorph Contin to
control the pain from the original damage done to the vertibrae.
Long background to get to the point. We also played golf. We were
certain that particularly with the damage to the vertibrae that she
would never play golf again....WRONG!!
About two years ago we went out to try a few easy swings. Taking it
slowly, she gradually increased her stamina, until today, she is back
playing two times per week. She has to ride a cart...but who cares.
Good luck Ken,
Nina and Frank Boal
Good Day All:
I wanted to introduce myself to you all. Frank and I have journeyed together the last few years. He was diagnosed with smoldering myeloma in sept 0f 2006, in December of that same year I was diagnosed with breast cancer. Needless to say it was alot to take in but like typical capricorns we armed ourselves with information. My journey was blessedly brief and went without incident, requiring only minimal surgery and some radiation therapy. My last treatment for radiation was in May 2007.
Frank's Myeloma moved from smoldering to active in the brief space of a few weeks at the end of May 2007. We had to hit the internet again for an information fix and talked to anyone we could find.
Frank has a wonderful attitude and is a true warrior and has handled his ordeal with a great zeal and lust for life.
Ken I would like to add a couple of things to Frank's recommendations.
The stem cell induction tastes awful, make sure you have strong mints with you that day.
When your temp spikes you will need someone knowledgeable to speak for you, and take notes, because you won't remember a thing! A tape recorder helps.
Keep optimistic and as the transplant co-ordinator told us when Frank went into hospital following the transplant, the faster you eat the faster you will recover! The cancer websites have all kinds of suggestions, fruit cups, juices, frozen popsicles, ice cream, soup, etc.
I look forward to reading the posts.
susan
Hi Ken
I was diagnosed in 2003 and had a stemcell transplant in 2004. I had alot of lesions and fractures. It was a long journey that I could not have done without the support of my family.What I can say is stay strong,keep positive, and have the faith that will get you through this.
My motto has always been 'we cant change it so we have to deal with it'. I wish you all the best in your journey and I know you will get through it too.
Lynn
Hello Ken...and other fellow 'warriors'.
I am with the Sault Ste. Marie, Ontario MM Support Group. My journey began on August 30, 2007. Actually, in February, 2007 I had had a total knee replacement (due to osteoarthritis) and became anemic immediately afterwards. For several months my physician checked my blood repeatedly, determined to find the problem. I was recovering well physically from the surgery, but totally fatigued and unable to return to work. Unfortunately, in Sault Ste. Marie we have no hematologist who might have detected it sooner. In late August a bone marrow biopsy confirmed third stage MM.
Words cannot express what a shock that was! I had just celebrated my 55th birthday and a very successful 36 year career with the federal government, with retirement on the horizon. I thought contemplating retirement was a huge transition, but facing cancer turned out to be a much more daunting challenge. I did not return to work, but retired in November 2007 - suddenly, living...and thriving, with cancer became my full time job.
It was a blessing in disguise, and my life has become so much richer over the past year. Fortunately, I have a wonderful Oncologist here who very quickly got me referred to the Ottawa Blood & Bone Marrow Transplant Programme. I chose Ottawa rather than Toronto as I had lived there for 12 years and have a great support system that included my sister.
I began VAD in the Sault in October 2007, had my stem cell collection in January and my transplant on February 26, 2008 - both in Ottawa. I found the transplant to be anticlimactic compared to the cell collection and chemo treatments. It was much like a transfusion, short and painless.
In Ottawa, they declare transplant day your new 'birth date', and they encourage you to go out and celebrate...I don't need to be told twice! They warn you that you will soon lose your taste buds. As someone who loves good food...enjoying a good 'Keg steak' with 8 good friends (and good wine) was definitely a must! I savour the memories...they were right - it was a long while until I would enjoy another good meal like that!
My situation was somewhat different as in Ottawa they prefer not to hospitalize transplant patients unless necessary. I was an out-patient and stayed at a Rotary operated motel-type facility on the hospital property. A full-time caregiver was required, and a friend stayed with me the first week until my husband was able to join me. That was critical as at times my mind was pretty fuzzy and I was quite weak. Also, numerous medications were administered and my caregiver ensured I took them as prescribed. I visited the hospital daily for several hours for three weeks after transplant - for regular monitoring, hydration when required, and one platelet transfusion. Twice my temperature became elevated and I was given antibiotics that immediately took care of it. Had it stayed high for more than a few hours, I would have been hospitalized. There were five other patients going through the process at the same time and we all reacted differently. The others all were hospitalized for at least two weeks (one for a month) for varying reasons. One needed a feeding tube and another was in isolation for two weeks. I was told I was an 'exception' to the rule...again, I feel truly blessed! I did experience mouth sores and the worst sore throat imaginable for a few days - I found rinsing/gargling with club soda a tremendous help. Also diarhrea was severe for several days. It was extremely important to keep hydrated and properly nourished, and I was determined not to have the feeding tube down my throat (although I heard from others it was not that bad). I drank plenty of liquids (water & juices) and ate lots of puddings & soups - ice cream was my best friend! I also drank Ensure which I actually enjoyed (fellow patients did not). Rice and pasta were easily tolerated, and for about a month my taste buds were shot. Nothing tasted 'right' for a couple months afterwards but everything returned to normal. I stayed in Ottawa for about five weeks in total, the latter two weeks only visiting the hospital weekly for checkups.
The first month back home I needed daily naps and 10-12 hours sleep nightly. My energy steadily increased, and I recall tiring easily for a few months. In June I began aqua fitness classes twice weekly at a local pool - that really helped me regain my strength & mobility. I was cautioned against any strenuous 'pounding' exercise that might jar my bones. Walking outdoors daily was encouraged, and I was also told I could lift light free weights. By August, I had more energy than I had had in many, many months...and I now engage in aqua fitness 4-5 times a week.
Currently, I am considered stable, am feeling better and more energetic than I have in years! It's like having a new lease on life! I receive Pamidronate every 2 months, and Pentamidine inhalation treatments monthly.
For me, this has been an amazing journey, and I have met so many wonderful people along the way. Recently, I met Frank, Carol and several other wonderful warriors while in Toronto. In September, I attended the National Myeloma Canada Conference in Toronto and was overwhelmed by the encouraging news about several new treatments on the horizon for MM patients. Again, I met many wonderful souls traveling this path...we are not alone!
Community support is so very important. Take comfort Ken, in knowing you have others to lean on who will accompany you in the coming days and months.
Personally, I also found meditation and journaling helpful. And, regularly connecting with and updating my own network of 'Soul Friends & Earth Angels' got me through many tough moments.
I would like to share some of the life lessons my journey has taught me:
1. Every moment is precious.
2. Listen to your body.
3. If you do not take care of your body, where will you live?
4. Let go of fear.
5. Take time to heal.
6. Let others support you.
7. Taking care of your 'self' is not selfish.
8. Never lose faith, there is always HOPE.
9. Count your blessings and express your gratitude.
10. Attitude drives your destiny.
I wish you all the very best Ken in your journey. If I can support you in any way, please let me know.
And...thank you Frank, for inviting me into your 'blog' - this is my first 'blogging experience'.
Blessings to us all,
Jill
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