I'm just figuring out how to post photos to my blog.
Thursday, December 27, 2012
The cutest cria ever
This is Johnny's Skye Blu of AVC
I'm just figuring out how to post photos to my blog.
I'm just figuring out how to post photos to my blog.
Sunday, December 23, 2012
26th anniversary!
Today Brad and I are celebrating our 26th wedding anniversary. Actually, it's been 28 years because we lived together for 2 years before we got married. Wow, huh? We are having a great time spending the weekend together. My friends Bud and Carole recently celebrated their 45th wedding anniversary. Holy cow and congratulations!
Pityriasis rosea
Well now, what do you know? I do not have psoriasis but rather a slightly unusual condition known as pityriasis rosea.
The medical community has a lot of unanswered questions about this skin condition including what the heck causes it. The etiology is unknown... It might be a reaction to a viral infection or it may be caused by something else completely. Here's what they do know. The condition begins with a red scaly patch, which gets to be about 1-2 inches in diameter. Its called a herald patch. Mine was on the top of my arm near my elbow. A few days later, all hell breaks loose and red patches - lots of them - develop over a short period of time. They occur mostly on the trunk of the body and down the legs. For some folks they itch like crazy but mine have been pretty quiet. There is no known cure. Steroids may help the itch but won't make the patches resolve. Antibiotics and anti-fungals don't help because it isn't bacterial or fungal in nature. The only cure comes with time. It can take anywhere from a few weeks to a few months for it to disappear and it may or may not reoccur. Ok, I can deal with this.
My theory is that the rituxan treatments are suppressing my immune system making me susceptible to weird crap such as pityriasis rosea.
My theory is that the rituxan treatments are suppressing my immune system making me susceptible to weird crap such as pityriasis rosea.
Friday, December 14, 2012
2nd rituxan maintenance treatment
Back to the infusion room today for the second rituxan maintenance treatment. Brad was with me as always. Weigh in (painful these days, sigh), blood pressure (normal), finger prick to obtain blood for a CBC and on to waiting room number 1 to meet with Dr. Kubba. We discussed my overall health. I feel great. Talked about this weird skin thing that's popped up over the last couple of months. Looks like its psoriasis. Oh joy... But better than what I have been fearing which is cutaneous lymphoma. When I suggested that as a possibility Dr. Kubba said he thought it was unlikely (yeah!) and it would be kinda like winning the lymphoma trifecta from hell. Ok well let's not go there and wait to see how this pans out. I will see Dr. Mehta and then on to a dermatologist. My mother had horrible psoriasis as a child and so I'm guessing I've inherited another freaky gene from her.
I will have another CT/PET scan early in February and we'll see how things are looking. If the scan is clean then I'll move to one scan a year. A graduation of sorts I guess. 😊 Hopefully the outcome of the scan will be good and I'll only have to chug that nasty barium once a year.
We discussed changing my rituxan maintenance schedule to every two months rather than every three months. Dr. Kubba said he'd read research showing this was providing good results. I've read similar literature and so I readily agreed to the change. Oh boy, six times a year in the big chair!
I can't recall if I've talked about rituxan before so forgive me if I repeat myself. Everything I've read about it says that the treatment of follicular lymphoma can be divided into two eras - before rituxan and after rituxan (I means it's adoption in the treatment of lymphoma). Rituxan is in a way a kind of acceptance that this is an incurable disease. I don't like that one little bit. I would be inclined to take a bigger risk and undergo RIT (radio immunotherapy) and try for a cure. It's a truly elegant idea. Antibody molecules that bind to CD20 receptors on B cells (those are protein molecules on the surfaces of the cells) are bound to radioactive molecules and injected into the body. A single treatment is given. Those antibodies bind to B cells and deliver the radioactive molecule specifically to those cells. There is way less of a chance of damage to organs and secondary cancers (the cure killing the patient). The down side is that the treatment comes with nasty side effects, all of the really good ones, nausea, vomiting, hair loss... No way they will do that to me while I am asymptomatic. Really that's ok but the thought of a possible cure is appealing.
Modern treatments for follicular lymphoma have somewhat increased OSR (overall survival rate) from around 10 years to maybe as long as 14 years. This is a good thing. Rituxan has not increased OSR but it has increased the interval between diagnosis with follicular lymphoma and the first chemotherapy. Remember, rituxan isn't technically chemo - it's a biological agent (as opposed to chemical). So, you're are essentially buying time before you require POISON to treat the disease. There are several promising treatments close to approval so it's just a waiting game you try to survive to wait for those treatments. Sigh. Hell of a way to live.
Having said all of that, life is good. I have a month off before classes begin in January and hope to get a lot done around the ranch. The crias (alpaca babies) are getting big! I'm not sure why but this year we just kinda never got around to weaning them so we have these gigantic babies that are unnaturally attached to their mothers. I think we are gonna take the plunge this weekend and subject everyone to a week of whining and crying as both parties make the adjustment. Good thing it's winter so the windows are closed and we can't hear them. 😉
I guess that's it for now. Sorry to ramble and thanks so much for reading. It is my hope that someone who needs this info will stumble upon my blog and find it helpful. I know several of my friends read this and I appreciate your interest and friendship. If I don't blog again before Christmas I'd like to wish you a wonderful holiday and a prosperous and healthy new year.
I will have another CT/PET scan early in February and we'll see how things are looking. If the scan is clean then I'll move to one scan a year. A graduation of sorts I guess. 😊 Hopefully the outcome of the scan will be good and I'll only have to chug that nasty barium once a year.
We discussed changing my rituxan maintenance schedule to every two months rather than every three months. Dr. Kubba said he'd read research showing this was providing good results. I've read similar literature and so I readily agreed to the change. Oh boy, six times a year in the big chair!
I can't recall if I've talked about rituxan before so forgive me if I repeat myself. Everything I've read about it says that the treatment of follicular lymphoma can be divided into two eras - before rituxan and after rituxan (I means it's adoption in the treatment of lymphoma). Rituxan is in a way a kind of acceptance that this is an incurable disease. I don't like that one little bit. I would be inclined to take a bigger risk and undergo RIT (radio immunotherapy) and try for a cure. It's a truly elegant idea. Antibody molecules that bind to CD20 receptors on B cells (those are protein molecules on the surfaces of the cells) are bound to radioactive molecules and injected into the body. A single treatment is given. Those antibodies bind to B cells and deliver the radioactive molecule specifically to those cells. There is way less of a chance of damage to organs and secondary cancers (the cure killing the patient). The down side is that the treatment comes with nasty side effects, all of the really good ones, nausea, vomiting, hair loss... No way they will do that to me while I am asymptomatic. Really that's ok but the thought of a possible cure is appealing.
Modern treatments for follicular lymphoma have somewhat increased OSR (overall survival rate) from around 10 years to maybe as long as 14 years. This is a good thing. Rituxan has not increased OSR but it has increased the interval between diagnosis with follicular lymphoma and the first chemotherapy. Remember, rituxan isn't technically chemo - it's a biological agent (as opposed to chemical). So, you're are essentially buying time before you require POISON to treat the disease. There are several promising treatments close to approval so it's just a waiting game you try to survive to wait for those treatments. Sigh. Hell of a way to live.
Having said all of that, life is good. I have a month off before classes begin in January and hope to get a lot done around the ranch. The crias (alpaca babies) are getting big! I'm not sure why but this year we just kinda never got around to weaning them so we have these gigantic babies that are unnaturally attached to their mothers. I think we are gonna take the plunge this weekend and subject everyone to a week of whining and crying as both parties make the adjustment. Good thing it's winter so the windows are closed and we can't hear them. 😉
I guess that's it for now. Sorry to ramble and thanks so much for reading. It is my hope that someone who needs this info will stumble upon my blog and find it helpful. I know several of my friends read this and I appreciate your interest and friendship. If I don't blog again before Christmas I'd like to wish you a wonderful holiday and a prosperous and healthy new year.
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