I'm new here too, I was diagnosed with Systemic Mastocytosis about 7 years ago. I just posted under the thread "Can someone have mastocytosis and still have negative blood tests?" & then saw this post. I have suffered from severe headaches with this disease but my current "pile" of medications seem to be controlling the headaches pretty well, I still get headaches just not so bad. I know that names of meds are quite often different in US to Australia but I'll list their drug names where I can.
Telfast - Fexofenadine 180mg 2 x day
Nalcrom - Oral Sodium Cromoglicate 200mg 3 X day
Pyralin EN - Sulfasalazine 1000mg 2 x day
Brufen - Ibuprofen 800mg 3 x day
Aspirin - 300mg per day ( I have a circulation problem & take this to prevent blood clots, doctors not sure if its related to SM or not, some people with SM react badly to aspirin so suggest you check with doc before taking this)
Zaditen - Ketotifen 1mg 2 x day - This drug was brilliant at stopping all itching & improved headaches heaps but I gained 5 kg in 5 weeks while on this, it also made me very drowsy so I have stopped taking it.
I find the Brufen the best for dulling bad headaches & it's good for bone/joint pain that I often have but again it is a NSAID & you need to check with your doc.
I also go to the hospital every 4 weeks to have intravenous Intragam - immunoglobulin this treatment has taken my life from utter hell to bearable.
I go on and off several other drugs including Prednisolone and have trialled dozens of different meds. I know some people with SM take a mast cell stabilisor called Singulair, my doctor tried me on it but I had a severe reaction to it that nearly killed me.
What works for one person doesn't always work for someone else, talk to your doctor & keep trying different meds until you find something that works for you. My meds haven't stopped this disease & they haven't got rid of all my symptoms but they have made life bearable.
Ok this is getting a bit long, sorry, if you have any questions I'm glad to help,
I have been on a pile of meds for several years now but the masto is just progressing. The one wonder drug "Gastrocrom" or Ketitofen is one that I can't take. I have every adverse side effect. I was also on chemo "Gleevec" for 6 months til I ended up with liver damage from the chemo or masto we are not sure which. I think it was the Gleevec but it didn't work anyway the number of malignant mast cells in my bone marrow kept going up not down. Gleevec doesn't work if you have the mutation in the ckit 816 which I do. I am on percacet for pain and Allegra 180 2x's a day (H1) and Zantac (h2),
Acephix (h2), can't even do a baby aspirin it sets off the anaphylaxis. The head pain is getting so bad I am waiting on yet another CT scan. I do have a brain tumor and it was partially removed in 98 after that the masto just went haywire. The doc believes the pain in the head is from the massive histamine dump in the brain but wants to rule out any more tumors. There are no migraines meds that work I have tried them all. Just wondering if anyone found something new. The percacet takes the edge off and does help the bone and joint pain though.
Wendy
Last edited by Administrator; 02-27-2007 at 10:18 AM.
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Hi Wendy,
I can only imagine how bad it must be to have a brain tumor as well as SM, I hope it isn't the brain tumor causing your headaches. You don't appear to be on any anti-inflammatory meds, I didn't get any relief from my headaches until I was put on anti-inflammatory meds (Brufen & Pyralin) even when on both H1 & H2 antihistamines and sodium cromoglycate. There's often an increase in Prostaglandin d2 with SM which causes vasodilation, vasodilation in the brain causes pain. Anti-inflammatories can help to decrease or inhibit vasodilation.
I'm sorry Gleevec didn't work for you, did your doctors know you had ckit 816 before putting you on it? Gleevec (Glivic in Australia) was only approved for use in Systemic Mastocytosis last year in Australia & only for SM without D816V ckit mutation. From what I understand there are several different 816 mutations each with different letters. I asked my doctor about the ckit mutations about 6 months ago & he admitted that he didn't know anything about it. So I don't know if I have 816 or not. Last time I saw him he still acted like he didn't know what I was talking about. I'm seeing him next week & have printed out a pile of research articles to give him so he'll have no more excuses! From what I've read recently there seems to be a lot of research going on & trials of treatments designed to target specific ckit mutations, in one trial they had 100% remission so I'm optimistic that in time there may be a cure for SM.
Just curious, how old are you? How long have you had SM? Do you have skin lesions? I'm 39, I was suspected of having SM at the end of 1999 but that was at least 10 years after I first started having some symptoms. Things got drastically worse around 1997 & I was tested for hundreds of things, changed doctors a few times and finally an endocrinologist decided to test tryptase and histamine. I didn't have any skin lesions until about 2 years ago which I think hindered the diagnosis a bit. I now have quite a lot of Telangiectasia Macularis Erruptiva Perstans and some Urticaria Pigmentosa.
I'm sorry that I'm probably not much help for your headaches but would like to keep chatting (writing) if you do.
I just turned 41. I was diagnosed with masto in 1994 when I started getting the UP spots all over. I had no other symptoms then except the spots and they didn't even itch then. The doc then told me its very rare and its rare to progress. Guess he was totally wrong. In 1998 I started getting massive headaches so they did a ct scan and found a brain tumor. Had brain surgury and they removed part of it and said it was either coming from the brain stem or too close to it to remover it all. The surgeon must of been an ego maniac because he didn't even test what he removed from my head so we don't even no if it was caused from the masto. After the surgury it took about 6 months to fully recover (although I no longer had a sense of smell). Then the headaches started coming back and the masto symptoms took off like wildfire. I was on all the masto meds and had to keep switching the cocktails til we found the ones that helped and even then once I was on them for a few months had to switch again because they weren't helping. I have headaches all the time but recently they are getting so bad I want to die. I have dealt with severe bone pain in my legs and joints for about 3 years now. Anyway by 2004 my doc was at a loss of what else to do since we couldn't get it under control. He sent me to MD Anderson Cancer Hospital in Houston, TX where they were doing clinical trials for Gleevec for systemic masto. They said they would have to do another bone marrow biopsy and if my mast cells were atypical and had the cd2 or cd25 markers it would show my masto cells were not normal mast cells but malignant and I would be in the trial. Well my mast cells were positive for both cd2 and cd25. At the time they hadn't done the test for the ckit mutation. They said once they got enough masto patients they would do the test for all of us at once. But they started me on Gleevec. I had to have blood work every week and return to the hospital every 3 months for a bmb. The mast cell #'s were going up not down. About 5 months after being on the chemo I started to get even sicker if you can imagine that. My liver was really bad. They finally did a liver biopsy and I had
a very sick liver with alot of necrosis. They stopped the Gleevec since it wasn't working anyway. It took quite a while for my liver to get better and the side effects from a bad liver are awful, worse than being a masto or on chemo. After a few months they wanted me to try another chemo 17-AAG or a SuperGleevec (which is suppose to work for masto's with the ckit 816 mutation or so they say) and my local doc said I would wait on that since they wouldn't tell him what the toxicity would be on my liver since it was already damaged. So here I am just waiting. I don't have anymore good days. I do take anti inflammatory naproxin sodium and lots of liquid benedryl daily. I think I forgot to mention that earlier. I buy the childrens liquid benedryl and take lots of it because it works faster than the pills. I also have epi pens because I am a "shocker". I also pass out but usually feel it coming on and sometimes can lay down before I fall down. I just got my latest blood work back today and it looks like my wbc is high, segmented neutrophils is high (that's always high) and lymphocytes is very low. I am sure my doc will call me friday and go over it like he always does.
Wendy
Quote:
Originally Posted by Aussie39
Hi Wendy,
I can only imagine how bad it must be to have a brain tumor as well as SM, I hope it isn't the brain tumor causing your headaches. You don't appear to be on any anti-inflammatory meds, I didn't get any relief from my headaches until I was put on anti-inflammatory meds (Brufen & Pyralin) even when on both H1 & H2 antihistamines and sodium cromoglycate. There's often an increase in Prostaglandin d2 with SM which causes vasodilation, vasodilation in the brain causes pain. Anti-inflammatories can help to decrease or inhibit vasodilation.
I'm sorry Gleevec didn't work for you, did your doctors know you had ckit 816 before putting you on it? Gleevec (Glivic in Australia) was only approved for use in Systemic Mastocytosis last year in Australia & only for SM without D816V ckit mutation. From what I understand there are several different 816 mutations each with different letters. I asked my doctor about the ckit mutations about 6 months ago & he admitted that he didn't know anything about it. So I don't know if I have 816 or not. Last time I saw him he still acted like he didn't know what I was talking about. I'm seeing him next week & have printed out a pile of research articles to give him so he'll have no more excuses! From what I've read recently there seems to be a lot of research going on & trials of treatments designed to target specific ckit mutations, in one trial they had 100% remission so I'm optimistic that in time there may be a cure for SM.
Just curious, how old are you? How long have you had SM? Do you have skin lesions? I'm 39, I was suspected of having SM at the end of 1999 but that was at least 10 years after I first started having some symptoms. Things got drastically worse around 1997 & I was tested for hundreds of things, changed doctors a few times and finally an endocrinologist decided to test tryptase and histamine. I didn't have any skin lesions until about 2 years ago which I think hindered the diagnosis a bit. I now have quite a lot of Telangiectasia Macularis Erruptiva Perstans and some Urticaria Pigmentosa.
I'm sorry that I'm probably not much help for your headaches but would like to keep chatting (writing) if you do.
What ever you do don’t give up, maybe you might need to get some more heavy duty pain meds, narcotics, I’ve had to have them from time to time. They make me feel like a drowsy drunk and I worry about addiction so only take them when I’m in severe pain. Even if you only take them now and then, having a break from the pain might make life a bit more bearable. If your quality of life is so low then maybe the risk of trying the 17-AAG would be worth it. If it works imagine how good you would feel if the masto was in remission. I have to admit I’m a bit envious of you, my doctors have never offered any treatments aimed at curing masto only stuff for the symptoms.
I totally understand about the passing out I get that too, like you I’ve learnt to recognise the warning signs and sit or lie down as quick as I can. It happened in the supermarket once and I sat on the floor in the middle of the aisle, got some very strange looks. I’ve ended up in hospital several times from really severe attacks, and that’s always a nightmare. One time not long after I was diagnosed my specialist came down to the emergency room to see me and decided to admit me to try some new meds and for tests. I discharged myself five days later because I felt like some sort of laboratory rat. The tests were bad enough but also, one of the doctors thought it would be a good chance for the medical students to see a patient with a disease so rare they might never see it again. So day and night I had med students and other doctors calling in to see me, asking stupid questions and then talking about me to each other like I wasn’t even there. I still get paraded in front of a bunch of med students every time I see the dermatologist but considering he didn’t even recognise the TMEP I put up with it because someone else with masto might benefit one day if these doctors know what it looks like.
Good luck with the doc on Friday if he calls, ask him about stronger pain meds.
I don't give up ever but I am not willing to be a lab rat again in another clinical trial right now. I am on Percacet which is a strong narcotic, the next step up I think would be morphine. My doc did increase the strength of it though. I am like you and was so afraid to become addicted. But my doc told me straight out one day that he could not fix me, no one could right now but at least he could ease my pain and to take the pain pills and not worry about being addicted, because I wasn't some junky, that I needed the pain pills. I don't get the drunk feeling on them anymore. Actually they seem to give me a little energy and sometimes it makes it hard to get to sleep. I have to take lots of benedryl before I take the percacet because narcotics are a mast cell degranulator. They also make me nauseous occassionly so I take anti nausea medication too. I know what you mean about the ER's. I have been several times and each time we had to tell the ER doc what they needed to do cause they have never dealt with masto before. One of the good things is that when I have the anaphylaxis I don't have trouble breathing so they always argue its not anaphylaxis. But I win in the end after they talk to my doc on the phone. I hate the ER so much the last few attacks I have dealt with it at home and took my chances. I am still here so its fine. I tell my doc that and he understands he doesn't fight me on it anymore. He has 5 other masto patients but he says they are not nearly as bad, although one of his masto's keeps breaking bones and they can't figure out why since her bone density is normal. I had heard someone was working on an H3 blockers, that is was suppose to be for the mast cells in the brain or something but I can't find where I read that. Does having your period set off the attacks too? It does for me every month when I ovulate and then during the period. I wish they would just take everything out cause I can't have kids anyway but then again surgury for us masto's is dangerous itself.
Wendy
Quote:
Originally Posted by Aussie39
Hi Wendy,
What ever you do don’t give up, maybe you might need to get some more heavy duty pain meds, narcotics, I’ve had to have them from time to time. They make me feel like a drowsy drunk and I worry about addiction so only take them when I’m in severe pain. Even if you only take them now and then, having a break from the pain might make life a bit more bearable. If your quality of life is so low then maybe the risk of trying the 17-AAG would be worth it. If it works imagine how good you would feel if the masto was in remission. I have to admit I’m a bit envious of you, my doctors have never offered any treatments aimed at curing masto only stuff for the symptoms.
I totally understand about the passing out I get that too, like you I’ve learnt to recognise the warning signs and sit or lie down as quick as I can. It happened in the supermarket once and I sat on the floor in the middle of the aisle, got some very strange looks. I’ve ended up in hospital several times from really severe attacks, and that’s always a nightmare. One time not long after I was diagnosed my specialist came down to the emergency room to see me and decided to admit me to try some new meds and for tests. I discharged myself five days later because I felt like some sort of laboratory rat. The tests were bad enough but also, one of the doctors thought it would be a good chance for the medical students to see a patient with a disease so rare they might never see it again. So day and night I had med students and other doctors calling in to see me, asking stupid questions and then talking about me to each other like I wasn’t even there. I still get paraded in front of a bunch of med students every time I see the dermatologist but considering he didn’t even recognise the TMEP I put up with it because someone else with masto might benefit one day if these doctors know what it looks like.
Good luck with the doc on Friday if he calls, ask him about stronger pain meds.
Sorry it's taken me so long to reply, it's been a very long week. I hope you check back here again. I spent most of Tuesday at the hospital, having my IV treatment and saw my specialist. He is going to look into the ckit tests, he's not sure if it can be done at my hospital. I had blood taken for tests and he's ordered a few extra ones to look for cd2 and cd25 and a bunch of other things. I will most likely have to have another bone marrow biopsy, he's been trying to get me to have another one for a couple of years now but I've refused because I couldn't see any benefit. Definitely not looking forward to that but finding out which ckit mutation, if any, that I have will make it worth the pain. I have been having a lot of trouble with my eyes this week, I get Iritis every now and then, which causes lots of eye pain and makes my vision blurry. The docs think it is probably related to the inflammation caused by the masto but I've never read about it being a symptom of masto. So I'm back on prednisolone which I don't like taking because I have trouble sleeping when I'm on it and get heaps of fluid retention.
My period does make everything worse every month, when I here people complaining about pms I feel like saying try having masto. I'm sorry you can't have kids, are you married? I'm a single parent with a 14yo girl. I realised a long time ago that I would never be able to have another baby, most of the meds I'm on I couldn't take if I was pregnant and I couldn't physically cope with a baby. I have heard of people with masto having kids, I don't know how they managed without their meds. There are lots of other things that set me off but alcohol is by far the worst, before I got diagnosed I actually thought I was allergic to alcohol and it was what caused my first severe attacks. I know a lot of people can't eat seafood, but fortunately (I love seafood) it doesn't affect me. Do you have trouble with alcohol or seafood?
Hey, I have been chatting with Wendy on another **** but have not talked to here lately. Hopefully everything is OK. I was jsut diagnosed with Masto of the skin with a biopsy. Doctors said it was TMEP. I convinvced the doctrs to to the Serum Tryptase test last week, Wendy had said it was neccesary, it came back at 22. My doctors are still thinking it is only of the skin, but did do a bone scan since I have such leg pain and they said they do not feel the need to do a Bone Marrow test? What are your thoughts? My docotrs really do not know much about this and any help is appreciated.
Sorry haven't had much concentraton lately to get on the computer. Chris, first I believe they can only test your mast cells from your bone marrow for cd2 and cd25. The only time from everything I have heard anyway, is the only time they will find circulating mast cells in your peripheral blood is when its progressed to mast cell leukemia which is the worst form. And its true your tryptase would still be elevated even if the masto only effects your skin. I have an appt with another oncologist on April 18th. We'll see what he can do since my doc says there is nothing more he can do just keeps pushing the pain meds. Bronwyn, what kind of IV treatment are you getting, if you told me before I can't remember the masto memory is in full swing lately.
Hey make them knock you out for the bone marrow biopsy. When I was going to MD Anderson in Houston they would knock me out and man it was so much easier. They would use 2 different meds to knock me out. 1 was Fentynal (which they call the milk) and I can't remember the other. Believe me I have had 2 bmb's w/out being knocked out and they are torture. I also had the same meds when they had to knock me out for my liver biopsy. Oh yeah, before they gave me the meds they did give me an IV push of benedryl first.
wendy
Quote:
Originally Posted by Aussie39
Hi Wendy,
Sorry it's taken me so long to reply, it's been a very long week. I hope you check back here again. I spent most of Tuesday at the hospital, having my IV treatment and saw my specialist. He is going to look into the ckit tests, he's not sure if it can be done at my hospital. I had blood taken for tests and he's ordered a few extra ones to look for cd2 and cd25 and a bunch of other things. I will most likely have to have another bone marrow biopsy, he's been trying to get me to have another one for a couple of years now but I've refused because I couldn't see any benefit. Definitely not looking forward to that but finding out which ckit mutation, if any, that I have will make it worth the pain. I have been having a lot of trouble with my eyes this week, I get Iritis every now and then, which causes lots of eye pain and makes my vision blurry. The docs think it is probably related to the inflammation caused by the masto but I've never read about it being a symptom of masto. So I'm back on prednisolone which I don't like taking because I have trouble sleeping when I'm on it and get heaps of fluid retention.
My period does make everything worse every month, when I here people complaining about pms I feel like saying try having masto. I'm sorry you can't have kids, are you married? I'm a single parent with a 14yo girl. I realised a long time ago that I would never be able to have another baby, most of the meds I'm on I couldn't take if I was pregnant and I couldn't physically cope with a baby. I have heard of people with masto having kids, I don't know how they managed without their meds. There are lots of other things that set me off but alcohol is by far the worst, before I got diagnosed I actually thought I was allergic to alcohol and it was what caused my first severe attacks. I know a lot of people can't eat seafood, but fortunately (I love seafood) it doesn't affect me. Do you have trouble with alcohol or seafood?
I was a little concerned about how much of an expert this new doctor was when he did the bone scan, he said it would show the disease? He only had his nurse call and tell me the results were negative and nothing else. I asked what he thought about the bone marrow test and he said that he will treat me symptomactially. Even though my legs kill me sometimes he still did not belive that was symptom enough to look furhter. He even said that it progressing beyond my skin is extremely RARE. I have NO follow appts to see this guy? From what I have been reading a tryptase level of 22 is around normal for people with this, of course unless they are having a reaction and then it goes haywire correct? Anyway, I have two weeks before my insurance ends. I will eventualy have insurance at my new job but not for a little while.
What your doc means by the bone scan being negative is that there are no "hot spots" that show up from the injection they give you. I have severe bone pain all the time and my bone scans are negative too and my bone density is normal. The bone scan will show any fractures or tumors forming in the bone. But you still have mast cells in the center of you bones that degranulate and its the chemicals those cells release that cause the pain. So don't worry that that test is negative, it is for most of us mastos. Was he the dermatologist recommended from Moffit? The only way to know if its progressed systemically is from bmb. But even that doesn't change the treatment that dramatically unless your mast cells are atypical, neoplastic or malignant (whatever word you choose) like mine are. What meds are you on again? Is Gastrocrom one of them?
Also most docs say that progressing beyond is rare. That is because they so rarely ever encounter the disease in the first place. But with adult onset of mastocytosis most research I have found is that depending on the researcher writing the article there is a 30-70% chance of progression from skin masto to systemic masto in adult onset. But again the treatments are not much different between the too until the severity changes such as constant pain, neurological problems, atypical mast cells etc. One good thing is that progression is usually slow. I was originally diagnosed in 94 then it started systemic in 98 and now its just getting really bad. there is no cure and no way to slow it down if it progresses. We take it one day at a time and just do what we can.
Also most docs say that progressing beyond is rare. That is because they so rarely ever encounter the disease in the first place. But with adult onset of mastocytosis most research I have found is that depending on the researcher writing the article there is a 30-70% chance of progression from skin masto to systemic masto in adult onset. But again the treatments are not much different between the too until the severity changes such as constant pain, neurological problems, atypical mast cells etc. One good thing is that progression is usually slow. I was originally diagnosed in 94 then it started systemic in 98 and now its just getting really bad. there is no cure and no way to slow it down if it progresses. We take it one day at a time and just do what we can.
Wendy,
I was so discouraged today from the doctor, I am calling back tomorrow to get a new appt, but it is $50 every time he sees me. My GP told me to cancel the dermatologist appt, since no one thinks I should get the PUVA. This doctor I am seeing now teaches at USF too, so I am sure he has an affiliation with Moffit. I told him that my legs just throb at night but I guess since I look so happy and healthy he really is not as concerned. I am taking the antihistamines.. only on Atarax and Dytan at night and Claritin for the day. But I can just feel that I am not at 100%. My spots are gettign worse too. They are on my neck and looks like they are going onto my face. ARGH!!!
Chris
Wendy it’s good to see you posting here again. I’ve been really unwell, still am, but have been checking here occasionally to see if you had posted. How are your headaches? Have your docs been able to help you yet?
Chris I’m glad you found this site; I agree that chatting with people who actually have masto can be so much more helpful than reading about it. I do read lots about it though, especially medical journals, partly to educate myself & also so I can educate my doctors. The reality is that very few doctors know much about this disease & the few that actually treat anyone don’t have the time to keep up with reading recent research. I often print out journal articles & take them to my primary specialist (immunologist/rheumatologist). Most docs wouldn’t like this but mine is pretty down to earth.
Chris I've just read most of your other posts & realize Wendy has probably answered most of your questions already but thought I'd add a few bits of info, sorry if any of this is repetitive.
Wendy sorry I have to disagree with what you have said about TMEP, please don't take any offence.
I have TMEP (biopsy confirmed). There really isn't a lot of info around about TMEP but most references to TMEP say that it is rarely systemic, that it does not itch, that it is not positive for Darier’s sign (swelling if scratched) & rarely causes flushing, diarhea & other systemic symptoms – for me NONE of that is true. I was diagnosed with Systemic Masto before I had any skin lesions at all. I get severe flushing, headaches, diarhea, and tachycardia. My lesions itch like crazy, swell up all the time & go blood red.
TMEP is supposedly only found in 1 % of all mastocytosis patients, it is the rarest form of skin masto. BUT I have already met (internet) 1 other person with TMEP, he does not have systemic masto & now you Chris, so I’m thinking it is not as rare as they think. I doubt your dermatologist would have said it was TMEP if it isn’t; the lesions are quite different to Urticaria Pigmentosa, which I now have some of those too. Also the biopsy would have shown changes in the capillaries hence the “Telangiectasia”.
As for the PUVA I wouldn’t waste your money unless you want a short-term cosmetic fix. It does not get rid of it permanently & I’ve read it can come back within a couple of months. Something that works just as well but just as temporary is getting sun burnt. No dermatologist will recommend it due to risk of skin cancer but I’ve let my arms & face get burnt occasionally to clear it all up for awhile. My entire back, chest, stomach & arms are covered with TMEP now but I have resisted getting my whole body burnt because I would go into anaphylaxis from the heat for sure. I use lots of topical cortisone cream on my skin, it helps reduce the redness, swelling & itching a bit but doesn’t get rid of it.
Chris I don’t want to scare you about the possibility of systemic disease but if I were you I would want to know for sure. Your tryptase being 22 is definitely elevated & according to the World Health Organisation (WHO) criteria for disease classification, that is 1 of the minor criteria for Systemic Mastocytosis (tryptase >20ng/ml) You need 1 major or 3 minor for the diagnosis. The only way to know for sure if you have systemic masto is to have a bone marrow biopsy & aspirate. This test is excruciatingly painful so think twice before having it. As Wendy said, the treatment probably won’t differ if you have systemic or not but your docs my be inclined to take your bone/joint pain more seriously & they are more likely to get you onto Gastrocom & some other medications if you do have systemic masto. I know Wendy can’t take Gastrocom but I do (Nalcrom here) & it has helped me. Us masto people all seem to have some bad reactions to some meds, but what reacts with one person works well with another person. I was tried on Singulair & had a severe reaction to it. You will only know how you react once you’ve tried the med. If you do get the Gastrocom give it time before you decide it's not working because it can take 6 to 8 weeks to get the full effect.
As Wendy said, you need to be on H1 & H2 antihistamines, keep trying different ones until you find the ones that work best for you & with the least side affects. You may need anti-inflammatories for the pain, some masto people react badly to them so be careful. Maybe get the epi-pen first, just in case. I also agree with Wendy about the alcohol, since you had trouble with it before don’t drink it again. You might want to get your iron, folate & B12 levels checked, especially if you have had bouts of diahrea. Malabsorption & anemia are common problems with masto. Even on daily iron tablets & multivitamins I have had anemia several times & have had to have a couple of iron transfusions.
I am glad your still here. You can help Chris too. With my brain fog I do get things confused. My headpain is still awful. My MRI came back and showed my brain tumor is a little bigger but not as big as when they originally did the brain surgury. So my doc thinks the pain is from the mast cells in my brain and doesn't know what else to do beside keep taking the Percacets for the pain. I have an appt with a new oncologist on April 18th. I didn't tell my doc that cause I didn't want to hurt his feelings but there has got to be something else out there that will help. I am sick all the time and feel like I have the flu, pain in my head, hips, legs and just about every where. Today was the first day I have been able to concentrate enough to read a book. I haven't even had the energy to do anything. Now that it is hot here in Las Vegas it makes everything worse. I guess I have been feeling sorry for myself or just getting aggravated with myself actually for not feeling normal. You know how that is. Tomorrow I am going to get up with a very positve attitude. I hope Chris can find a good doc who will work with her. I know how she feels seeing new docs. You may look good on the outside so when they hear your symptoms they think your nuts. I have been there too. I have so many thoughts crashing together in my brain at the same time I don't think I am making sense so I better log off for now before I really ramble.
One thing I wanted to say and forgot. When I was originally diagnosed they did 2 skin punch biopsies. 2 different appointments. One from my back and one from my thigh. Now I saw the spots they biopsied before they removed them. (The one on my back they showed me using mirrors. The weirdest thing the spots looked the same but one came back "UP" and the other "TMEP". So either they look similar or maybe just underneath the UP spot on my leg was TMEP. Let me clarify if I can think straight. The one from my back was UP and the one from my leg was TMEP. But what doesn't make sense is they looked identical. So how could this be? Guess it doesn't matter because its progressed way pass that stage anyway.
You two are so helpful!! It is funny that you mention having UP and TMEP. My biopsie said TMEP but my newest doctor did say the some of my spots look more like UP. Half of my spots are brownish and look like age spot and the other half are smaller and bright red. It looks like I have razor burn on my lower legs all the time. If I get in the sun they look like they will bleed, hence why I started staying out of the sun. I had no clue what I had but I knew the sun effected them badly. I am not sure which medicine is an H1 and which is an H2 blocker. But I think I mentioned what I am taking? I have heard the Bone Marrow test is very painful, but I really woudl like to know if it is systemic, my newest doctor seems in no rush? I am changing jobs in two weeks (great timing on my part!!?) and will have no insurance for a month. I really wanted him to take advantage of the time I have now and I do not even have a follow up appt with him. I think I will call him again today!!! Thanks again for your help!!
