Just as I thought, and an incident.

Well, here I sit and figured I should do some writing. Been a busy day so far, up and out by 6:00am to volunteer to do traffic control for the Running from Cancer event today. Had to be at Tecumseh Arena parking lot by 6:30am to get my t-shirt, safety vest and intersection assignment. Wasn't sure the t-shirt thing was going to work out, biggest they had was a Large! However I managed to squeeze into it, barely! I got a great corner to work, Manning and Riverside, which is a three way corner bordered by Lake St.Clair/Tecumseh Riverfront Park and Lakewood Golf course. Could not have been a better day for the event and participation appeared to be high. At my intersection I only got to see the half marathon and 10k runners.

I was back home by 10:15, then tidied up the apartment and my laundry is currently in the dryer. Brenda is on a one week getaway with her mom and a bunch of other family members. They are up at Deep Bay Lodge, on the  (Top Lake) portion of  Wahwashkesh Lake up north. So yes, I'm home alone unsupervised! To tell the truth, I was already wondering what I was going to do with myself  by Saturday afternoon! Thank goodness for this event today, and now my brother Jamie coming over with some movies to watch. 

But first, I must go back to Friday afternoon in order to bring you all up to date on the latest with me. While sitting here Friday afternoon, the phone rings, caller ID says WRCC., which is Windsor Regional Cancer Center, I figured it was the radiation dept. calling to cancel or change my appointment with my radiation oncologist. How wrong I was. It was my medical oncologist (chemo Dr.) on the phone. Let me point out that usually when one of my oncologists calls, it's usually one of the nurses passing on information or messages on not the Dr.'s themselves. This was the Dr. and when the Dr. calls usually it's not great news.

Dr. Kanjeekal was calling to inform me that she had just heard back from the Hamilton group. As I mention a few posts ago, she had sent a copy of my history up to them to review and get their opinion to see if a mini allogenic stem cell transplant would be feasible for me. Having read that particular post on here, you would also know that I was not in favor of doing ANY kind of transplant at all. The Dr. however felt it best we cover all my options and thus sent my case to them.

Having heard back from the Hamilton group she was now calling me with the details of their opinion as to a mini transplant. There opinion at this stage of things is that I would not benefit from a mini transplant, and that even the toxicity of it would most likely cause more bad than good. So in a nut shell, there it is, one more option off the table and thus my options get narrowed further. Like I said though, I was not in favor of it anyway, so now that I don't have to travel to Hamilton to hear them out had they been in favor of it, I can narrow my homework to just a couple of options at the moment. ABVD or ICE.

I myself am leaning toward ICE. ABVD contains the "red devil" Adriamycin which back in 2007 I was told I had had my lifetime dose of. Hearing now that after the Dr. checks the records and does a muga scan she may be able to give me a "little" more, makes me nervous. Just an example of what can happen is in this excerpt from Chemocare.com :
"A serious but uncommon side effect of adriamycin can be interference with the pumping action of the heart.  You can receive only up to a certain amount of adriamycin during your lifetime.  This "lifetime maximum dose" may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs.  Your doctor will check your heart function before you may take any adriamycin and will monitor your heart closely during your treatment.  Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended."  Now I don't know about 7-8 years down the road, but should I go there, I don't want to be put down by heart related issues due to chemo! After what I've got invested in this fight, uh uh, no way!

So I will have to take some serious time to think the option of ABVD over if  that is what the best option is. ICE I am still reading up on. More quality of life issues to think about. Boy never in a million years did I ever think I would be doing what I'm doing now. This is some crazy stuff, which you fellow patient know only too well. However we do our research, talk with the Dr's and we move forward with what ever it is we need to do to live.

Brenda's injuries from the boat incident

 that she sent me.

So as I sit here wrapping up this post, my brother just left, we watched, Just Go With It and The Dilemma, and I also just got a message from my wonderful wife Brenda who as I said earlier was up north on a getaway. She had a boating incident and got banged up a little, but doing OK. I guess the boat came up and hit her and she fell on the dock while getting out. Ice and painkillers for today's menu! Wish her well soon.

Love & Hugs,
Tim.

Funding for Rituxan re-treatment in Ontario Could be near!

The Lymphoma Foundation of Canada needs our/your help!


The LFC is currently working with the Ontario Ministry of Heath about the issue of funding Rituxan re-treatment funding in Ontario.

They need your help! If you or a fellow lymphoma patient you know is currently in need or could benefit from Rituxan re-treatment right now, then your/their voice and face are needed by them right now to help with this issue. Below is an email I received yesterday after a conversation with Tanja Loeb, National Communications Manger with LFC.

Please contact Tanja at LFC  if you or someone you know is in need now, also you can contact them to lend your support on this matter.

This is a huge step towards saving lives and improving lymphoma treatment in Ontario, Please, do what you can now  and reach out to your lymphoma friends network to support this move towards saving the lives of those who can benefit from Rituxan re-treatment!

Thank You,
Tim, xxx


From Tanja Loeb @ LFC:
Tim,

Thanks so much for your time this morning.  I am so glad that we will be able to work together to get the urgent issue of rituxan retreatment funding in Ontario brought to light. As you know, there are people right now in need of treatments that can save their lives who are not able to get it due to the funding inequity that exists in Ontario. We are grateful that the Executive Office is working on the issue, and we are very interested in doing anything that we can to support Rituxan being brought into their new Evidence Building Program.

We are  very committed to supporting lymphoma patients and families/caregivers who have asked for help in bringing awareness to this issue, and as part of this support, we know that we need to find out who they are.  We have already had people contact us for support, and the more people we can connect with, the more we can work together to bring “faces” to the issue, and to advocate and highlight its urgency.

Tim, thank you for your willingness to reach out to your networks and encourage other patients  to contact us so that we can help to gain access for Rituxan Retreatment in Ontario.

Tanja 

Tanja Loeb
National Communications Manager
Lymphoma Foundation Canada
www.lymphoma.ca 
C : 905.483.5278
P : 905.822.5135 ext 7
Toll Free: 1-866-659-5556 ext 7
F : 905.822.5135

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Guest Blog, by David Hass

David Haas, is an advocate for cancer patients and wants to make a difference in their lives because cancer has devastated so many people in this world. He loves to write and share his opinions, feelings, and views with others via his blog, the Haas Blaag

Cancer Survivor Networks and Their Importance

No one ever teaches you how to cope with cancer until you already have been diagnosed with it. There is no way to prepare for getting a diagnosis of lung, heart or breast cancer or dealing with a mesothelioma prognosis. You have so many questions- what will my daily life be like? How do I talk to my children? What can I do to stop the cancer from recurring? For answers to these questions and to find unlimited support from people who have been there, join a cancer survivor network.

The National Cancer Institute details the many emotional issues faced by those that just received a diagnosis and those that are going through treatment. You may find yourself going through periods of anxiety or depression as you navigate this process. Fatigue may make you feel even worse. Talking to your doctor, friends, family or a therapist will help. But sometimes you just want to connect with others that are going through the same feelings.   That is where cancer survivor networks come in.

Survivor networks are filled with advice from people just like you- those that were scared when they were first diagnosed and still worry about the future.  Many of these networks specialize in all different types of cancer, from melanoma to mesothelioma.  This can give you specialized information and understanding from people who are going through exactly what you are going through. They are also filled with stories of hope from survivors and tips from experts. Most hospitals offer regular meetings of cancer survivors that you can attend for free. Check with your local institution for more information.

However, you can still receive the same amazing support in the comfort of your own home. There are many cancer support networks available online. You can easily find general support networks or those that deal with just your specific type of cancer. On many, you can create your own personal profile to tell your cancer story and share blog posts, audio recordings, photographs and more. You can feel free to express yourself and find others that feel the same way you do. Through discussion boards and chatting, you can find someone to answer your questions and will often realize that what you thought were unique worries are not unique at all. You may even help someone else after you join!

The importance of joining a cancer survivor network cannot be understated. They are a great place to go to find the hope and support that will help you through your own journey as a cancer survivor.

By: David Haas

Results & some homework!

Last Wednesday I seen my Oncologist and at the same time received my C/T results. The visit overall went better than I expected. This node on my chin/jaw that has been concerning me, turns out not to be of great concern at all. The Dr. looked and felt it over and felt that it would not be necessary to do a biopsy of it and that we could use it as a gauge as to what is going on internally.

The C/T results showed there has been some growth in the tumors as was expected. The growth appears to be minimal, about 0.05cm overall with most of the affected nodes. Blood work all came back fine, so for now it is continue with the watch & wait. My oncologist will see me next sometime in September. If anything of concern comes up before then I can contact her and  she will see me.

She also informed me that she has sent a copy of my history to the the Hamilton transplant group for review, to see if I would be a candidate for a mini allogenic stem cell transplant. Even though I am not in favor of a transplant again, I have agreed to go up to Hamilton and hear them out if they think I would be a good candidate for this. I have my doubts that I would be, and even my oncologist is not certain I would be either, but is just covering all of the options that may be available to me. My options are pretty much down to a couple of chemotherapy options with ABVD being the one preferred. Even that would be on a reduced scale as I have already had adriamycin although my oncologist thinks there may be room for "a little more". That would be after undergoing a muga scan in order to see if I could handle anymore.

I really have some concerns revisiting adriamycin again. I know from my research and speaking with my doctors just how nasty a drug this is. It is the heart issues it can bring with it. That my friends scares the hell out of me. After all I've been through I don't want to add heart issues to the list! Let's face it, they've already told me once that I've had my lifetime dose of adriamycin, and now to say there may be a little more room makes me just a little leery about doing this again. With my options limited though what do I go with? Something that possibly causes heart issues, which I've already had, or then there is GDP, which will most likely make my neuropathy worse than it is now.

Let's face it they are all nasty options, but now I faced with making a decision on which will be the most effective for me, yet have the least harmful side effects. What a decision to have to make, I tell you the life of being a cancer patient! Even though there are days when you may feel like a million bucks, you still have all of this in front of you to have to deal with.

Reed Sternberg cells in Hodgkin’s Lymphomas

This watch and wait has to be one of the toughest things I've ever had to do. Even though I feel relatively fine, other than the usual being winded easily, weakness and neuropathy, it is still hard to wrap my head around the fact that there is cancer growing within me and I'm sitting back waiting for it to get worse and/or develop symptoms before doing anything about it. I'm used to being told that we need to get treatment started a.s.a.p. to get it under control.

So if I seem absent minded, miserable or look like I'm somewhere out in space, you now know why. My mind is racing around all these things that I have in front of me to deal with. Keeping positive is a full time job and really difficult some days, but I will get through it. For now it's time to do some home work to see what is the best road to take, hopefully it will be some time before I have to make that decision.

Tim, xxx