Patient and Caregiver Survey

Lymphoma Canada is looking for patients and caregivers to complete an online survey. If you are interested in participating, see the information below.

_______________________________________________________

Patient & Caregiver Perspectives Needed - Help Patients Gain Access to Treatment

Due to the rarity of many t-cell lymphomas, Lymphoma Canada is looking internationally to help find patients and caregivers who may be able to provide some important and much needed perspectives on t-cell lymphoma. Lymphoma Canada is conducting a survey of peripheral T-cell lymphoma (PTCL) patients and caregivers to appeal to the Canadian governments to provide funding for romidepsin (Istodax) in Canada.

Romidepsin (Istodax) has been approved by the FDA and Canadians are also trying to gain access to this new treatment. You don’t need to live in Canada to complete this survey.

Lymphoma Canada is preparing a submission to the pan-Canadian Oncology Drug Review (pCODR) for: romidepsin (Istodax) for the treatment of patients with relapsed/refractory peripheral T-cell lymphoma (PTCL) who are not eligible for transplant and have received at least one prior systemic therapy.

There are many subtypes of PTCL, such as:

• Anaplastic large-cell lymphoma (ALCL)
• Angioimmunoblastic T-cell lymphoma (AITL)
• Cutaneous T-cell lymphomas (including Mycosis Fungiodes and Sezary syndrome)
• Enteropathy type T-cell lymphoma
• Extranodal NK (natural killer) T-cell lymphoma, Nasal (also referred to as Angiocentric lymphoma)
• Hepatosplenic (Gamma-Delta) T-cell lymphoma
• Nasal NK/T-cell lymphoma involves natural killer (NK) cells
• Peripheral T-cell lymphoma Not Otherwise Specified (PTCL-NOS)
• Subcutaneous panniculitis-like T-cell lymphoma

By responding to our survey, you will provide us with the patient and caregiver input required for the submission. pCODR uses this information in the submissions to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.


BY COMPLETING THIS SURVEY, YOU ARE A PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS NEW TREATMENT IN CANADA.

You may access the surveys by clicking on the link below:
http://www.lymphoma.ca/post/ptcl-patients-and-caregivers-we-need-your-help


The survey will be open until midnight Pacific Time on Sunday, November 23rd and should take about 10 minutes of your time.

Lymphoma Canada would like to thank you in advance for your contribution and greatly appreciates your participation in this survey.

Hello guests

I don't have anything new to report, but I wanted to say hi to everyone checking out the site.

There have been quite a few hits on this blog this week. While I hope that everyone finds the site at least a little helpful and hopeful, it makes me sad that the likely reason someone visits my site is that they or someone they love is dealing with Cutaneous T-Cell Lymphoma. This can be particularly hard for the loved ones, not knowing what to expect or how to be supportive. For people with CTCL and their loved ones, the most important thing is to be caring for yourself. Stress has a really negative impact on not only our psychological well being, but our physical well being. Care for yourself so that you are able to care for others.

To those who are newly on this journey, remember that it is a long journey, full of options, opportunities, and hope. I would love to hear about your story, either by comment below, email, or on your own blog. When I was first diagnosed, I had a hard time finding information from the patient's perspective, and most blogs hadn't been updated in more than 5 years. It gave me the feeling of being alone in the journey, which is certainly not the case. So I just wanted to say that I am here, if you have any questions, feel free to ask. You aren't alone in your journey.

Talking with colleagues

Last week the school I teach at went on a retreat. I always enjoy getting away, seeing people that I don't get to talk to all that much normally, and spending more time outdoors, or at least in rooms with windows.

One of the activities I was assisting with is led by a psychologist who counsels our high school students. She likes asking questions and in general I don't mind answering. Then the question of how my "skin thing" was doing.

At the time when I decided to tell my colleagues about it, I felt very worried and concerned for what might happen with my CTCL My skin had been getting progressively worse at an exponential rate. I was in that panicked space of worst case scenarios. I knew that I wanted and needed their support and telling them seemed like the right decision at the time. Because I still have my hair, people assume that I must really not have cancer. I try to explain about various treatments and how chemo would be a possible treatment down the road, but if I can treat with a less harsh method and get results, why would I jump to chemo.

The questions about my "skin thing", although well-meaning, always leave me feeling like a baby who's whining about a little diaper rash. I try to explain that overall I am at a best case scenario right now and that I realize how blessed I am that treatment worked, but it's starting to come back and I'm nervous about round 2.

Knowing now where I'm at, I'm not sure that I would make the same decision to tell everyone. I'm extremely thankful for the kind and supportive notes I received right away, and it definitely helped with my emotional response to know that I had that much support backing me, but sometimes I wish I could now erase their knowledge of my CTCL. That I could make it so that's not what they think about when they look at me.

Aaarrrrrggghhhhh

So. Setbacks are frustrating. But a part of life.

Last night while taking a shower I noticed a scaly patch of skin where my main bad spot had been previously. That area had been clear the last 15 months, but there's now a definite spot about the size of a quarter popping up there again. Given how bad it was previously and that it's in the same area, I'm more nervous about it than any other little spots that have popped up here and there.

It's frustrating. Mostly because I had really been enjoying being completely clear.

It was just a bug bite

A couple of weeks ago I got 2 mosquito bites on my neck. Knowing that scratching them would just make it worse I was very careful not to scratch them at all. Over the first week they seemed to be healing and going away. Then a couple days ago the area started getting red and sore feeling. I can barely feel the original bite site, but an area about the size of half a dollar has become really red and the lymph nodes right under the skin are swollen to the size of large grapes and really achy.

:-(

The way it is now is way worse than the original annoying nature of the bites.

10 month post treatment updates

I received a letter that Dr. Pandya at UT Southwestern will no longer be seeing patients with CTCL. I've been grateful to him for his care over the last few years and am nervous about seeing someone new. There will be another doctor (Dr. Heather Wickless) stepping up to take his place with the clinic, but as far as I can tell from researching her online, she doesn't have much CTCL experience. But everyone has to start somewhere, so I'll probably set up an appointment with her in June. I'll report thoughts once I meet with her.

Like the title says, I'm at 10 months without treatment. It's been going fairly well. I've had a few spots pop up here and there. There's one on my leg about the size of a blueberry that has been there for awhile now. It's not gotten any bigger so I'm not all that concerned, but I'll still be sure to show the new doctor. The end of the school year is always a stressful time, and stress definitely exacerbates my skin. We're also moving this summer and the sheer amount of stuff that we've accumulated from the various roommates is overwhelming. My wife's mom moved in with a 20' moving truck and moved out with a sedan. A large part of me wants to just pay someone to come take absolutely everything, but the rational part tells me that I need to go through it all and sell off what we can.

Anyways, not much else going on. As I've said before, no news is good news, so I probably won't be posting for awhile but feel free to contact me with questions or just to chat.