The Leukemia & Lymphoma Society Community: Message List

Chicken Pox in Ontario

communityreply@lls.org — Fri, 13 Jul 2012 20:02:08 GMT

My niece (aged 14) and nephew (aged 16) were born and raised in Ottawa, Ontario, both have chicken pox. Needless to say I am staying away from them for a while.

I discussed this with my GP and he informed me that OHIP stopped paying for certain vaccines, including chicken pox, for several years so most children now aged 20 or less have not be vaccinated.

If you have young visitors I suggest you let the parents know about the potential danger to BMT recepients.

Re: 2,922

communityreply@lls.org — Fri, 13 Jul 2012 19:40:57 GMT

Congratulations! That's fantastic.

Re: First Anniverary

communityreply@lls.org — Fri, 13 Jul 2012 19:29:03 GMT

Hi Kelly,

The Pred is definitely affecting my hips and weakening my muscles. I have had a bone density scan and the results showed that my bones are very strong and there was no sign of ostioporosis.

An X-ray of my hips indicated a possible problem of the right hip so I had an MRI yesterday to confirm that there is a problem or not. I'll know the results in a couple of weeks. The physio is helping a lot.

Cheers,

Paul

First Anniverary

communityreply@lls.org — Fri, 13 Jul 2012 14:34:45 GMT

It has been a while since my last post but I just wanted to let you know that today I am celebrating my first anniversary since my BMT.

It has been a wild year with many ups and downs but mostly ups. I still struggle with feeling very weak, my hips hurt and I still sleep a lot. It is a challenge getting off of Prednisone, I got as low as 15mg per day but had to go back up to 25mg, my doc has put me on a combination of Prednisone and Cortisone to help lower the dose.

I do many things that I enjoy doing, including some cycling, but because the weather is abnormally high this year I am restricted in what I can do outside. I have just started doing physiotherapy to strengthen my legs and help releive the pain in my hips.

All-in-all, life is good.

Paul

Cured

communityreply@lls.org — Mon, 02 Jan 2012 11:48:29 GMT

I just posted a picture of my first wood carving, go to http://www.pickler.ca/opaul.html to see the multi media carving and the steps I took to get threre.

Here is a little history about my story. I was diagnosed with AML in January 2011 and immediately started my first of 4 pre-transplant chemo treatments. I received TBI and my Bone Marrow Transplant (BMT) occured on July 13, 2011. I received 4 more after transplant chemo sessions. I went home in mid August.

It is a depiction of how I felt during and after the treatment. Creating the work is a great triumph for me, not only is it very threraputic, it proved to me that my artistic skills are strong and that I was able to transfer these skills from painting and drawing that I have done extensiverly in the past.

I value your feedback about this work most of all. I have the following questions - does the work depict what you went through or not?

Thanks in advance for your help.

Paul

Chills, Body Pain and High Fever - 5 Months after BMT for AML

communityreply@lls.org — Mon, 19 Dec 2011 05:51:56 GMT

I get teeth chattering chills, severe body pain and high fever. Morphine and warmed blankets do not take away the chills and pain. This can be accompanied by stomach cramps and diarhea. This usually lasts 2-3 hours. Blood tests, cultures, EKG and chest X-rays show nothing wrong. Doctors have no clue and express no concern about these events.

Has anybody here gone through a similar experience? What did you do to relieve the pain, chills and fever?

Paul's Eating Tips for the Recovering Cancer Patient

communityreply@lls.org — Sat, 03 Dec 2011 10:55:58 GMT

As a pass time and in support of my passion for cooking, I plan to express my humble ramblings from a cooking blog that I am creating. I want to include a section with suggestions for cancer patients like us who are undergoing and recovering from treatment.

I want to talk about my experience in weight loss, what worked to help gain weight and tricks to get around chemo taste buds. I will publish what worked for me, feedback from you, recipes that were provided to me from the support staff at the hospital and information I have gathered from this LLS web site.

NOTE that I am not a nutritionnist and information I would provide will be strictly from experiens.

Please let me know what you think and if you know or not that somebody else is already doing this.

Thanks

Paul

Re: My Transplant - Fighting AML

communityreply@lls.org — Wed, 30 Nov 2011 16:10:32 GMT

Tex, I feel great about it. I was going to suggest the change in frequency myself.

Re: My Transplant - Fighting AML

communityreply@lls.org — Wed, 30 Nov 2011 00:02:38 GMT

Another milestone for me today - I now only have to go to appointments every 2 weeks instead of every week. It feels like a Christmas present.

It tells me that my doctors now have more confidence in how I am doing.

Re: Extreme Weight Loss

communityreply@lls.org — Sun, 27 Nov 2011 14:10:41 GMT

Thanks, that is a lot to take in. I will bring this up to my Doctors' attention.