I am posting this survey request and new pilot program in the hopes that other Stage I and II MF patients will participate. I did not receive any compensation for this post.
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Thursday, September 22, 2016
New treatment study needs participants
Friday, November 13, 2015
An extremely sensitive day
I've just set up my first appointment with my new doctor in Denver. I'll be seeing her on December 1st which is good because today was a. really. bad. day.
Not just my regular spots, but two other areas are being extremely sensitive. Painfully sensitive. The weather has turned colder and drier and I know I need to use lotion more, but just the thought of putting on lotion right now is enough to bring me to tears. The sensitive areas are not red or noticeable in any way but they hurt really bad. My regular spots are darker than normal too.
I really hope I can get back into nbUVB treatments soon. I had forgotten exactly how bad my spots could be here in Colorado. When I lived here 12 years ago, that's when my spots were their absolute worst and pretty much stage 2 plaques. I also really hope that the increased issues with CTCL won't become the cost of being able to live in Colorado.
Not just my regular spots, but two other areas are being extremely sensitive. Painfully sensitive. The weather has turned colder and drier and I know I need to use lotion more, but just the thought of putting on lotion right now is enough to bring me to tears. The sensitive areas are not red or noticeable in any way but they hurt really bad. My regular spots are darker than normal too.
I really hope I can get back into nbUVB treatments soon. I had forgotten exactly how bad my spots could be here in Colorado. When I lived here 12 years ago, that's when my spots were their absolute worst and pretty much stage 2 plaques. I also really hope that the increased issues with CTCL won't become the cost of being able to live in Colorado.
Sunday, November 1, 2015
Trying to set up an appointment at University of Colorado - Anschutz Cancer Center
I moved to Colorado this summer and things have been going well. A large amount of personal life stressors have meant the small spots on my lower back are getting noticeably worse. My wife saw them and got really upset that I hadn't already set up an appointment to be seen by the specialist here.
So I'm trying to get an appointment with UC - Anschutz Cancer Center and there are quite a few hoops to jump through. I am glad that there is an actual CTCL clinic there though; it even has a dedicated phone line, just for CTCL patients. I'll be seeing Dr. Pacheco and her nurse Ellen has been helpful in guiding me through all the hoops to jump through.
1. Insurance - This one makes sense. What doesn't make sense is that the first time I called, she said she couldn't set up an appointment without my insurance information. Ok, I called back when I had it, spoke to a different person who said that they couldn't take my insurance information unless I had an appointment set up first. I knew I had a lot more hoops to jump through before getting the appointment set up, so it made no sense to set up a fake appointment just so they could enter my insurance information. Finally she just took my info so hopefully it's in the system now.
2. Dermatologists information - I had my original biopsy done by the dermatologist I had gone to in order to get treatment for "eczema". The dermatologist did the biopsy, gave me the news of the diagnosis 2 weeks later, and I've not seen or talked to her since then. It seemed bizarre that they'd rather have the dermatologists info than my CTCL specialist's info.
3. Pathology Report - I suppose knowing my original diagnosis condition is helpful, but it seems to me it would be even more helpful just to check out where I am now.
4. Biopsy Slides - One company has my original biopsy slides, a different company has the pathology report made off those slides. New doctor wants both.
I get that they need to verify that I actually have CTCL and am not making it up, but I don't get why they want my reports that are 3 years old rather than my current info from my most current doctor.
I'm hopeful that they can get the reports this next week and set up an appointment fairly quickly. It would be nice to get treatment (hopefully nbUVB again) going as soon as possible. Thanksgiving break would be a convenient time to start treatment back up and get acclimated to the mild sunburning.
So I'm trying to get an appointment with UC - Anschutz Cancer Center and there are quite a few hoops to jump through. I am glad that there is an actual CTCL clinic there though; it even has a dedicated phone line, just for CTCL patients. I'll be seeing Dr. Pacheco and her nurse Ellen has been helpful in guiding me through all the hoops to jump through.
1. Insurance - This one makes sense. What doesn't make sense is that the first time I called, she said she couldn't set up an appointment without my insurance information. Ok, I called back when I had it, spoke to a different person who said that they couldn't take my insurance information unless I had an appointment set up first. I knew I had a lot more hoops to jump through before getting the appointment set up, so it made no sense to set up a fake appointment just so they could enter my insurance information. Finally she just took my info so hopefully it's in the system now.
2. Dermatologists information - I had my original biopsy done by the dermatologist I had gone to in order to get treatment for "eczema". The dermatologist did the biopsy, gave me the news of the diagnosis 2 weeks later, and I've not seen or talked to her since then. It seemed bizarre that they'd rather have the dermatologists info than my CTCL specialist's info.
3. Pathology Report - I suppose knowing my original diagnosis condition is helpful, but it seems to me it would be even more helpful just to check out where I am now.
4. Biopsy Slides - One company has my original biopsy slides, a different company has the pathology report made off those slides. New doctor wants both.
I get that they need to verify that I actually have CTCL and am not making it up, but I don't get why they want my reports that are 3 years old rather than my current info from my most current doctor.
I'm hopeful that they can get the reports this next week and set up an appointment fairly quickly. It would be nice to get treatment (hopefully nbUVB again) going as soon as possible. Thanksgiving break would be a convenient time to start treatment back up and get acclimated to the mild sunburning.
Saturday, April 18, 2015
Slow is the name of the game
I've still yet to go see Dr. Wickless at UT-Southwestern although I really should. The spot on my lower back has grown to about the size of my whole hand. It's still thin and not too itchy but has definitely spread out. I've been under a lot of stress (both negative and positive) so I'm not too surprised about it. I've always been highly reactive to stress and usually work to not let stress get to me.
The reason I've not been to Dr. Wickless yet is related to the recent stress. We made the decision to move to Colorado and I've been job searching. It's been stressful considering that there are very few positions in the state for what I do let alone finding an available job. Despite the odds, I lucked out and was offered a position at my dream school. We'll be making the move this summer so I've decided to wait and just start seeing a doctor there, likely in Denver. I'm still researching possible doctors and I haven't gotten the details about the new health insurance yet.
I'm hopeful that once we get settled in Colorado in the next 3-4 months that the stress will come back down and the spots will go back to being dormant or at least stop growing.
Slow is the name of the game.
The reason I've not been to Dr. Wickless yet is related to the recent stress. We made the decision to move to Colorado and I've been job searching. It's been stressful considering that there are very few positions in the state for what I do let alone finding an available job. Despite the odds, I lucked out and was offered a position at my dream school. We'll be making the move this summer so I've decided to wait and just start seeing a doctor there, likely in Denver. I'm still researching possible doctors and I haven't gotten the details about the new health insurance yet.
I'm hopeful that once we get settled in Colorado in the next 3-4 months that the stress will come back down and the spots will go back to being dormant or at least stop growing.
Slow is the name of the game.
Sunday, November 16, 2014
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:
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.
_______________________________________________________
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.
Friday, October 3, 2014
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.
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.
Sunday, September 7, 2014
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.
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.
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