Tuesday, January 29, 2008

Still kicking

I have not died, I only have dial-up connection to the internet just now.

Healthwise, I am about the same as I have been since I've been receiving treatment by the oncologist and he has me on the mastocytosis protocol. Altogether, I take about 14 pills a day. Unless I take more.

AM
Doxepin
Nexium
Tagamet
Wellbutrin
Cymbalta
Clariten

PM
Doxepin
Tagamet
Singulair
Levsin
Atavan (2 or more)
Darvocet (pain is worse at night)
GABA

GABA is an amino acid that really helps to calm and to sleep, which is important since the itching is much worse at night.

Ok, gang, hang in there. I'll try to post occasionally but it's so terribly slow (the dial-up), I have to be having a very calm day to attempt it or I get aggravated. And we all know what happens with the masto when that happens.

Take care. Thank you for the concern. You are in my thoughts and prayers.

39 comments:

bebny@yahoo.com said...

just found your blog, sorry to hear of your $$ probs, but your descriptions are almost exact to mine. I hae been lucky thus far at keeping the cognitive problems in check and they don't impact work too much YET. I have Deg Disc Disease one back surgery and 4 more burst or bulging disks. The migraines are debilitating. Keep on going its great stuff. It's nice to know your not alone and there is someone else suffering the same. GREAT JOB!

Anonymous said...

Thank God everything's ok!! Hang in there friend!

Anonymous said...

That anonymous was Piia... i just cant... ;)

maiaToRga said...

Glad to see you're ok... I was starting to worry... Glad to see that you've seen a doctor and are being taken care of...

Anonymous said...

You need to talk to your oncologist about Cladribine. This is a chemoteraphy drug that is active against mastocytosis, and is relativelly safe. Your case sounds serious enough that this can be used. I've had SM for 17 years, and my symptoms are not as severe as yours, still, Cladribine is my backup plan in case things get ugly.
Not many doctors know about it, but my hematologist agrees that this is the back-up plan should I get worse.
There is more info here:

http://bloodjournal.hematologylibrary.org/cgi/content/full/102/13/4270

Doctors can be reluctant to use it because they are not well-informed, and prefer the low-risk (for them) wait and see approach. Do the relevant research yourself, go to your oncologist and make it happen, don't take no for an answer, it will be a lot better than taking all the paliative drugs you are taking.

Good luck and Godspeed.

Anonymous said...

Any body out there with mast cell / systemic anaphylaxis want to talk??

handyman said...

Hi all from Singapore. I have been very sad for the past few weeks due to some personal problems. And today I feel that I can not handle my emotion and mind anymore. Out of desperation I just type "lose hope" in Google Image and thats how I found this blog. After reading the posting here I feel so ashamed of myself and then my hope is renewed. I am healthy physically but in the spirit and emotion, I am nothing compared to you guys that have gone through so much but can still keep the flame of hope burning. My sincere hope for a complete recovery for you all. Many thanks and God bless you all always.

Anonymous said...

To anonymous... talk about mast cells systemic anaphylaxis ? Yes, I have had two severe attacks in the past three months. I was diagnosed about twenty years ago, have been relatively stable with doxepin regime until now. Now have Rx Epipen, will see specialist tomorrow. Would be happy to talk with you regarding your case.........

Bridget said...

Glad to see you are back!

Our Family's Spot said...

Hi!

My son was finally diagnosed (again) with systemic mastocytosis about 2 or 3 months ago(I say again because it was suspected when he was 9 months old, but Johns Hopkins didn't think it was . . . long story). I was just reading your blog, and quite honestly it scares me! =0) Isaiah has had the blisters from rashes - your story is so similar to his. His rash hasn't completely gone away either - he still has patches on the soles of his feet, hands, and legs. Instead of 14 meds, though, he is only on 10. =0} I can understand the financial difficulties.

We will be praying for you!
Kelly & Isaiah

Anonymous said...

Hi! I also have systemic mastocytosis and live in Greenville, South Carolina. I am pretty sure now, looking back, that I was born with it. When I was 30 I broke my back twice in 6 months which prompted my doctors to keep testing me until they figured out what was wrong. I started out with the cutaneous version, but we didn't realize that was what it was either at the time. I have experiences with doctors at NIH and the Mayo clinic. My doctor here was at M D Anderson in Houston prior to moving to Greenville. Presently I am on Pegylated Interferon A-2B in addition to many other drugs. After hearing some of the other comments, it sounds like I have been a little more fortunate with symptoms, insurance, and doctors willing to try to figure me out. We laugh about me being their "science project". I haven't come across anyone yet that I know personally with Mastocytosis. My tolerance to drugs is incredible so I am still working full time. I work from home as a computer analyst so that really helps with the not so good days. My doctors are amazed at how well I am tolerating the interferon. If any of you have mastocytosis that affects your bone marrow, severe osteoporosis, or just anything in general, I will be glad to answer any questions if it would help. I am 57 now and still going strong. As you know the treatment options are limited and sometimes a process of elimination, not to mention the expense of the testing to begin with. I hope your health and financial situation improves.

Alaskini said...

Hello! I'm in the Anchorage, Alaska area and 3 yrs into the masto mambo. I love your blog and hope you're feeling well. Best of luck. - Alaskini

Grace said...

Hi!
I'm in China, and very glad to find your blog by chance. I have a friend who also got this disease,systemic mastocytosis. But in China,this disease can't be treated,even in the most famous hospitals. We are anxious to find someone who can help him, provide some information about the medcine or how the patients can be cured in your area.
HEIP!

Grace said...

Mr. BlueKat,
We want your help! I'm looking forward to receiving your reply as soon as possible. Would you please send the information to my email: ruirui.yu@eyou.com
Thanks a lot!

Anonymous said...

My 15 month old daughter was born with Diffuse Cutaneous Mastocytosis. It's been pretty bad but we seem to be getting to a good place now. I've opened a facebook group 'Support for Stephanie' and there are some links to some of the publicity we've been doing at the moment. She's had a pretty bad time with prejudice due to the visual extent of the condition so I decided to campaign for awareness. Please join her group if you have a facebook account. I'll try and send you an invite but I'm a bit of a technophobe! We're going to a workshop in Spain soon to see Dr Marianne Castells and Dr Luis Escribano - I'll be putting a full update on the site. We're up to some pretty good stuff in the UK and more doctors are becoming aware - we are working towards a medical network for Masto so fingers crossed for that.
Take care and keep sharing - it's the only way to fight this condition. Maria

Anonymous said...

Without knowing much about your case have you considered that your "cure" i.e., 14 pills a day, is making you worse? All those drugs have heavy side effects. With all the medicine you are taking at this point who can differentiate between an actual health problem and a side-effect from the drugs that you are experiencing. It's been my observation that people who live long healthy, productive lives stay away from doctors as much as possible.
BTW, I was diagnosed with mastocytosis 20 years ago and take no drugs.

Bridget said...

@ anonymous,

well you are very lucky to not have to take medication. bear in mind that there are many different forms of masto with varying degrees of severity. For myself, I know that I am on way less medication than other people with it, but obviously on far more medication than you are.

Your experiences are anecdotal, while medicine is a science proven model. While what is working for you is working for you (and that is excellent) that is not the case for everyone. I know for myself, I was in far worse condition (shocking every day, suffering from malnutrition due to the damage h2s had done to my stomach) before I started my medication than I am now. Is it an optimal situation? No, but I'm far healthier now than I was then.

Also, for the record, there is no cure for masto, and none of the medications any masto patient takes are touted as such. All they do is try to treat the symptoms to make the patients comfortable.

Marcie said...

I truly pray you are still kicking? I was diagnosed with Masto when I was 22 and now I am 43. It sux but has taught me to appreciate the few good things in life and the very few good days! I just found your blag and admire you so much for putting your struggle out there for us. You are helping so many people.
Peace,
Marcie

Jeannine said...

Just wondering if you are going to continue blogging? I really appreciate your blog and see that it has been a year...Just wondering when we will hear from you again?

Anonymous said...

I have a few questions:

1. Does serum tryptase level necesarilly correlate to amount of disease? I have read that it does, so does a tryptase of between 20 and 40 indicate indolent systemic or could it be a more sever form?

2. What does thes results mean?
MCH high
MCHC low
Lymphocytes low
INR low
Urea nitrogen high
sodium high
Creatine high
CBC set high
ECO2 low
HGB low
C3 very low
C4 low
Alanine amino SGPT low
Alkaline phosphatase high
T4 low
IgM off

urine hazy with epithelial cells and 2 + bacteria
Hemoglobin in urine +1

Thanks

Jessica said...

I was tested 3 days ago for mastocytosis and am waiting on the results. I have been showing all the symptoms since July when i was sick with bronchitis. I was given Levaquin also. I have gone into anaphylatic shock 4 times since then. My doctors all said allergies with an unknown trigger. I finally did my own research and discovered mastocytosis. My family dr agreed that i needed tested. So i am waiting around scared out of my mind. Reading that Im not alone is a great comfort to me. Thank you

matt said...

I am a 19 year old suffering from this disease. I cannot seem to get rid of flushing and burning sensation. Since you have a lot of experience I figured you might know what is the best medications to get rid of these symptoms. I applaud your braveness in your blog and wish you the best. Thank you.

wheelchairs said...

Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!

lolojames said...

I currently have indolent masto but trytase has been increasing every year. Would any of you tell me what your tryptase levels are? I have also been getting weekly acupuncture treatments for a year and a half now. I get most of my spots on the chest and acupuncture has helped get some of the 'heat out' so my reactions are not as severe. If I scratch any of my spots they still blow up 10X though, and my symptoms waiver substantially from ruining my life one week, to being totally livable the next. I am also glad to know I am not alone in this, I would greatly appreciate it if someone would share their tryptase level with me so I have some point of reference. I see a specialist in Denver at the University of CO hospital, but my insurance runs up at the end of the month!!!

Anonymous said...

Hello, I was diagnosed with Mastocytosis about three years ago (however I had the "cheetah spots" as i lovingly call them, since i was a young child). After i got "diagnosed" my own doctor didnt know what this disorder was so she did nothing for about two years. About a year ago i finally went to see the onchologist (sp?) who did the bone marrow test and diagnosed me with the first stage of the second type of the disorder. I guess its in my bones but not in my organs. I havent experienced any serious physical effects (not to be graphic but once in a while when i get very excited or nervous i get these "gag attacks", it feels like someone is putting pressure on my gag reflex--i told this to all of the doctors but they dont know what causes it--has anyone else experience this side effect? Also, beside the "cheetah spots" i have never had any acne or even regular pimples when i was growing up and now i'm 25 and i cant get rid of them! I switched my face cleaning producs, i tried not to use any at all and nothing helps. Its embarrasing enough to be a 25 year old woman with a bunch of red/brown "cheetah spots" on my face and now i have to deal with actual pimples like a 14 year old boy who is going through puberty! Does anyone know if these zits are mastocytosis related? And if so how can i get rid of them?? Any advice is very much appreciated!
thank you!
K

Anonymous said...

I'm an 18 year old female with bullous mastocytosis. I've had it my entire life and it has flared up severely during puberty and, quite conveniently, during major transitions. (Elementary to middle, middle to high, high to college) When I was young (5) I had masto spots on ny body. they were few in number and looked simply like mosquito bites. they faded with age but will flare up when I have a reaction. I have 4 pages of allergic triggers that vary in degree, and I have increased greatly in sensitivity since I was young. Reactions used to be indicated by itchy eyes, hives, etc. Now all reactions are immediately internal, throat and tongue. Just lately I have been graced with a burning, feverish sensation on my face that doesn't want to leave. I am currently on Gastrocrom 4X a day for chronic severe nausea and Cingular/Zyrtec for chronic allergy symptoms.


Anonymous, my spots went away when I was quite young This is a rare and fortunate occurance . I have been told that if they do not leave at a young age, they are there to stay. Your pimples are almost certainly Masto related, as masto spots are often described as blisters.

Anonymous said...

well, kat, i hope you're not doing badly at this late date. there are a lot of people apparently that utilize and enjoy your blog - me being one of them.

i remember that at one point you were wishing to visit mayo. i did, and the guy just handed me an antidepressant, saying nobody knows what to do. actually, if you go to the right place, people DO know what to do, and i think it was just HIM that didn't know what to do. so, do your reading before you get up the wherewithal to go anywhere.

as for previous comments re castell (sp) and akin and theoharides - all around boston - these are people that know what they're talking about.

when i was searching for what was wrong with me, i made a couple of big trips to academic centers - i have no money either, but amtrak, though it's most definitely not a fun experience, is reeeally cheap. also, often the centers will know of people who host patients in their home for free or a low fee. i really hope you're past this stage though, and doing well.

no pressure about posting again, but know that you've got people out here thinking about you and wishing you well :)

Anonymous said...

Does anybody know what happened to this person? I have a family member going through the same thing. I'm scared to ask but at this point I'd like honest answers.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Bless you sweetie. Look up "floxed". Levaquin, Cipro and that class of antibiotics has major class action suits against them. They are either triggering masto or causing a similar physiological condition. I wish you the best.>>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

I hope you found answers. I don't know them but bless you and I wish you the best.>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

I do so hope Stephanie is better. Bless her and your family.>>>>> Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

We are all brave in our own ways. Bless you.>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi Piia!>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.

BlueKat said...

Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.