Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi All, I was just diagnosed last month and will be receiving my first treatment beginning in January. Wanted to wait till after the holidays. Can someone give me some info on what side effect are really common. Been reading everything surfing around. What I can gather is that it is mostly like chemo with hair loss and sickness. I am trying to figure out my work schedule, normally work Tuesday thru Saturday. Thought I would give the shot Saturday night and pills Monday, Wednesday, Friday. Should I plan to be out for a few weeks after initial treatment? Or will working not be a problem? --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.551 / Virus Database: 343 - Release Date: 12/11/2003 --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.551 / Virus Database: 343 - Release Date: 12/11/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Lynne, Hair loss is less frequent than other side effects. Hair thinning may happen, but it regrows when you stop treatment. I have very long hair and was counting the hairs in my brush every day. My hair never did noticeably thin, so I was happy. The worst side effect for me was the constant nausea. But I was bad; I didn't drink water like I should. In fact, I hardly ever ate or drank anything. The fatigue was equally as bad for me, but I managed to drag myself to work, no easy feat since I work with developmentally delayed 3 & 4 year olds. I used my sick days when I couldn't deal with it, then when I ran out I took a few days without pay, but all in all ,with the support of my husband and my friends at my local support group, I made it. Been undetectable ever since, thank God! And I feel great, too. No more fatigue. I haven't felt this good in 13 years! Best wishes to you. > Hi All, I was just diagnosed last month and will be receiving my first > treatment beginning in January. Wanted to wait till after the holidays. > Can someone give me some info on what side effect are really common. Been > reading everything surfing around. What I can gather is that it is mostly > like chemo with hair loss and sickness. > > I am trying to figure out my work schedule, normally work Tuesday thru > Saturday. Thought I would give the shot Saturday night and pills Monday, > Wednesday, Friday. Should I plan to be out for a few weeks after initial > treatment? Or will working not be a problem? > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.551 / Virus Database: 343 - Release Date: 12/11/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Hi Lynne and welcome aboard! I also waited until January (a couple of January's ago) just because I had a big project at work that needed to be finished. Most of us continued working throughout. I would recommend if you have the option to take a couple of weeks off when you're starting without too much trouble, do so. I am salaried and my short-term disability along with the FMLA allowed me to take off at full pay. I got the papers from my dr and took a 2 month leave, and ended up returning to work after 4 weeks. It gave me a little time to get used to the effects of the meds. After returning to work, I probably missed a few more days over the course of treatment, but not enough to get any attention from my boss.. As far as the sides, they vary, but for most of us, the first couple of weeks are kind of wicked and then the body acclimates to a degree and things become more manageable. They aptly call them "flu-like" symptoms. I suffered with fever, headache, depression, nausea, fatigue. (you may want to look into the possibility of antidepressants) After a couple of weeks the only thing that never left me was the fatigue. The "flu-like" symptoms came and went. Do you take the pills only 3 times a week? I took them every day, though I know weight is a factor in the dosage. DRINK LOTS OF WATER!!! -dz-Lynne Dunham <lynne@...> wrote: Hi All, I was just diagnosed last month and will be receiving my first treatment beginning in January. Wanted to wait till after the holidays. Can someone give me some info on what side effect are really common. Been reading everything surfing around. What I can gather is that it is mostly like chemo with hair loss and sickness. I am trying to figure out my work schedule, normally work Tuesday thru Saturday. Thought I would give the shot Saturday night and pills Monday, Wednesday, Friday. Should I plan to be out for a few weeks after initial treatment? Or will working not be a problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 My hair thinned also, but not to the point of any bald spots or anything like that. It all grew back when I stopped treatment. By the way I should mention that the treatment was successful and I was still undetectable 1 year after discontinuing the treatment. I now am just on a course of regular physicals and I watch my liver enzymes. If they start getting out of norm I would probably go for another pcr, otherwise I go on as if I never met that nasty dragon!!! -dz- <runyonc2001@...> wrote: Hi Lynne,Hair loss is less frequent than other side effects. Hair thinning may happen, but it regrows when you stop treatment. I have very long hair and was counting the hairs in my brush every day. My hair never did noticeably thin, so I was happy. The worst side effect for me was the constant nausea. But I was bad; I didn't drink water like I should. In fact, I hardly ever ate or drank anything. The fatigue was equally as bad for me, but I managed to drag myself to work, no easy feat since I work with developmentally delayed 3 & 4 year olds. I used my sick days when I couldn't deal with it, then when I ran out I took a few days without pay, but all in all ,with the support of my husband and my friends at my local support group, I made it. Been undetectable ever since, thank God! And I feel great, too. No more fatigue. I haven't felt this good in 13 years!Best wishes to you.> Hi All, I was just diagnosed last month and will be receiving my first> treatment beginning in January. Wanted to wait till after the holidays. > Can someone give me some info on what side effect are really common. Been> reading everything surfing around. What I can gather is that it is mostly> like chemo with hair loss and sickness. > > I am trying to figure out my work schedule, normally work Tuesday thru> Saturday. Thought I would give the shot Saturday night and pills Monday,> Wednesday, Friday. Should I plan to be out for a few weeks after initial> treatment? Or will working not be a problem? > > > > ---> Outgoing mail is certified Virus Free.> Checked by AVG anti-virus system (http://www.grisoft.com).> Version: 6.0.551 / Virus Database: 343 - Release Date: 12/11/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Yes I am suppose to take the pills three times a week. I am big gal so not sure what that has to do with it. > Hi All, I was just diagnosed last month and will be receiving my first treatment beginning in January. Wanted to wait till after the holidays. > Can someone give me some info on what side effect are really common. Been reading everything surfing around. What I can gather is that it is mostly like chemo with hair loss and sickness. > > I am trying to figure out my work schedule, normally work Tuesday thru Saturday. Thought I would give the shot Saturday night and pills Monday, Wednesday, Friday. Should I plan to be out for a few weeks after initial treatment? Or will working not be a problem? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Lynne, You might want to double check with your doctor on the pills. I've never heard of anyone taking them only 3x week. You don't want to go through all the aggravation of treatment only to find you've underdosed and it was ineffective. I'm big, too, and I had to take 3 pills in the AM and 2 at night. > > Hi All, I was just diagnosed last month and will be receiving my first treatment beginning in January. Wanted to wait till after the > holidays. > > Can someone give me some info on what side effect are really common. Been reading everything surfing around. What I can gather > is that it is mostly like chemo with hair loss and sickness. > > > > I am trying to figure out my work schedule, normally work Tuesday thru Saturday. Thought I would give the shot Saturday night and > pills Monday, Wednesday, Friday. Should I plan to be out for a few weeks after initial treatment? Or will working not be a problem? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Terry I found you gain back alot quicker than you lose it. but dang the food sure taste better. Todays mighty oak is just yesterday's nut that held its ground.Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Went to the Dr. and the first thing you do is get weighed. Dr. lookedat me and said you must be feeling alot better, I thought I just looked better, then I realized that he was talking about the results of my returned appetite Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 I didn't want to hear this. LOL -----Original Message-----From: Tubs46@... [mailto:Tubs46@...]Sent: Saturday, December 20, 2003 7:37 PM Subject: Re: [ ] New to it all Terry I found you gain back alot quicker than you lose it. but dang the food sure taste better. Todays mighty oak is just yesterday's nut that held its ground.Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Pills just every other day? Wow! Lucky you! Hope treatment is good to you and for you.My husband is done with it. he began last january. he too wanted to wait till after the holidays, and we are all glad he did. good luck and stay positive, it does help. Sue and Gidget Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi also- :-) How quickly surgery is scheduled for ctoma removal depends on the doctor and the diagnosis. Faster is almost always better once the diagnosis is confirmed, but it doesn't necessarily mean emergency surgery. My daughter, who was 4 at the time, was diagnosed in April, with surgery in early July last year. The diagnosis was a slow-growing congenital ctoma. She had a recurrence found in February of this year, and had surgery in March - this time, since the ctoma had reappeared between November and February, the surgery was scheduled on a " fast track " basis because the ctoma was fast-growing. In both cases, the only testing done (beyond looking through the microscope) was hearing tests and CAT scans. The hearing tests help to determine the extent to which the hearing bones are involved, and establishes a baseline for the doctor to work against to track any hearing loss. The CAT scan shows the position and relative size of any soft tissue in the middle ear space, and while not a great diagnostic tool (it can't show the ctoma at high resolution), it helps the doctor know the general extent of the ctoma, where to look for it and how large it might be. To give you some idea of how effective/accurate the CAT scan is, based off my daughter's first CAT scan, the doctor estimated a ctoma of 7 millimeters, and it turned out to be more than 11 millimeters - basically, he knew it was big, and where it was located, but had to depend on actually going in to see just how big and how far it extended. Don't be afraid to get a second opinion if you aren't certain your current ENT is the right person to remove the ctoma. I went to several surgeons before settling on one recommended by this group, and I'm glad I did - I feel I " did my part " to ensure the best care for my little girl. I know it's frightening, especially when you don't know what it is you're up against, but you're doing the right thing by being here and looking up information. As most here will attest, your son will in all likelihood be fine, and will certainly weather all of this much, much better than you will. I had ctoma as a child (it's not hereditary, but my daughter and I just happened to win the genetic lottery), and I don't feel it dramatically impacted me, my development, or my happiness as a child. It's just something you live with. Best of luck. -Jeff. New to it all Hi my name is also (seen several on here). My son Gabe was at the ENT last week and I was told he may possibly have a ctoma. He has lost almost all hearing in his right ear. His left seems to be fine. He was really sick the day we went throwing up, fever of 102.8 and was given a shot and eardrops and some heavy medicine. He was suppose to go back in two weeks but since he is still sick I'm taking him back in tomorrow. I didn't feel comfortable waiting another week and a half. I've read alot about ctomas since last Thursday and I'm so overwhelmed right now I don't know what to think. I'm so glad I found this board and have all you wonderful people to talk with. I started reading the board over the weekend and didn't get a chance to post until today but wanted to say thanks for all the help and support. How long does it usually take from first diagnosis to havine surgery? and what kind of test will my son have to have? I read somewhere a c- scan but would love more input. Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 I was diagnosed with PA last summer. Sore foot...didn't scare or affect me too much. In March of this year I went into what I found out is called a flare. I've just started with Methotrexate and Celobrex. My question is...how long do these major flares usually last. Presently I'm four finger typing, can't open my pill bottle, can't walk the dog, pick up my five year old son, have difficulty turning the ignition of our family van...work... I have been told that flares usually last for a few months. Is this correct information? The mental side, coping with PA is almost as bad as the physical limitations that it employs. Sorry to sound so dire. Ron [Editor's Note: Hi Ron. Welcome to the PA list, but I'm sorry that your circumstances have brought you here. Flares have timetables all of their own. Some last for days, some for months, some for years. It sounds as if you have just begun taking the MTX. For many of us, it took up to 8 weeks before we felt the positive effects from the medication, so please give it time. You don't mention if you are under the care of a rheumatologist. It is essential that you go to one if you haven't done so already. Sometimes a rheumy will inject cortisone or give you a temporary script for prednisone to help fight off the most dire effects of a flare. You are right - the mental side of suffering from PA is certainly as bad (if not worse at times) as the physical. It is important that you try to concentrate on all the wonderful things you can still do while at the same time acknowledging the loss of those that you can't do. Hang in there - we're here for you. Please feel free to ask a thousand questions or reach out for support and understanding. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 ron, i'm sorry you are going through this right now. i know sometimes it can look very hopeless. keep your chin up. good days are ahead. have you had the symptoms of pa your whole life? jojoe406 <ronagill@...> wrote:I was diagnosed with PA last summer. Sore foot...didn't scare or affect me too much. In March of this year I went into what I found out is called a flare. I've just started with Methotrexate and Celobrex. My question is...how long do these major flares usually last. Presently I'm four finger typing, can't open my pill bottle, can't walk the dog, pick up my five year old son, have difficulty turning the ignition of our family van...work... I have been told that flares usually last for a few months. Is this correct information? The mental side, coping with PA is almost as bad as the physical limitations that it employs. Sorry to sound so dire. Ron [Editor's Note: Hi Ron. Welcome to the PA list, but I'm sorry that your circumstances have brought you here. Flares have timetables all of their own. Some last for days, some for months, some for years. It sounds as if you have just begun taking the MTX. For many of us, it took up to 8 weeks before we felt the positive effects from the medication, so please give it time. You don't mention if you are under the care of a rheumatologist. It is essential that you go to one if you haven't done so already. Sometimes a rheumy will inject cortisone or give you a temporary script for prednisone to help fight off the most dire effects of a flare. You are right - the mental side of suffering from PA is certainly as bad (if not worse at times) as the physical. It is important that you try to concentrate on all the wonderful things you can still do while at the same time acknowledging the loss of those that you can't do. Hang in there - we're here for you. Please feel free to ask a thousand questions or reach out for support and understanding. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Tell us more about yourself, where do you live, and I may have missed your name. The biggest help may be to meet one of us in person, maybe even with your parents around. I'm guessing you are around 20? It would help you to meet and see any one of us that is living with achalasia, even if treated or not. It will relax you a lot. Many of us are older, but there is something so calming about meeting another one and you won't feel nearly so unusual. Meet for coffee. You will have more in common than you can ever imagine, it is like meeting an old friend and you can find out how much we all share. You will meet great friends here, keep posting. Somewhere in our database or file section on this home page on some members made a brochure-like file that you can give to friends and family. It is difficult for others to understand.. .they keep asking if you have tried things with a blender or Slim Fast. They just don't realize that liquids can be even worse. But please tell us more and any one of us will travel even hours to meet you, I bet. It will help a lot. Come here any time and just let us know it is a bad day or a good day, we understand. Sandy, in Southern California>> Hi,> I'm new to the group and new to Achalasia. I started showing symptoms > when I was 18. When I was 19, the dysphasia was getting worse so I > talked to my doctor about it again. In December they did a dilitation > which didn't help and in January I was diagnosed with Achalasia when I > had a Manometry. Then in February I had the Botox injection done > because I cannot afford to miss school to have the Myotomy. The Botox > injection worked for a couple weeks, but now the spasms are more > frequent and my chest hurts all the time. I'm scheduled to have the > surgery May 19th, I've met with my doctors and surgeon many times and > did quite a bit of research on the internet, but I'm still afraid of > the surgery. I don't think my parents really get what is going on and > none of my friends show any interest in it either. Well that's kind of > a lie. My best friend has been here with me through it all, she's done > research of her own on the subject, but I don't know how to educate my > parents and my siblings. They don't show any interest and I hate > talking to a brick wall. How do I get them to understand what I'm > going through?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Hi Steph, Sandy was right - I am a Wisconsinite. I live about midway between Madison and Milwaukee. I had the HM with wrap on Sept.2 in 2003, and required a followup dilatation a couple years after. I'm still having some small problems, but nothing like before surgery. I was able to return to work in about 11/2 weeks after surgery. I have a desk job, which made returning easier. But I didn't even try to drive - 1 hour each way - for about a month(fortunately I do carpool and just made up the days later). Just take it easy on the eating stuff for a few weeks after surgery and you'll be fine. I'd love to talk to you, but we are leaving for Florida very shortly and won't be back till Memorial Day. I'll try to catch up on the posts when we return to see how it all went! Best wishes for a speedy recovery! Mikemike in WI Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 That is a just right distance to be away from family IMO. Too far to drop in, far enough to go home for holiday dinners. Some of us here have had some luck with antidepressants helping with spasms. Not sure which way it goes as far as there are some indications of depression being common with achalasia. Even the those who resist a depression diagnosis seem to have found some spasm relief on relatively small dosages. Maybe placebo, but achalasia is very isolating so it seems to help. You may find old posts about spasms and quick treatments... water usually, and often eating something, even if you regurg it that fills up your esophagus, like bread (I know weird). I visualize it as the bread keeping the esophagus from being able to move to spasm. I happened to be an excellent regurger (new word?) so that was my usual spasm treatment, along with water. Some may find some help with taking something like Aleve. I happen to get migraines, not as much now, but often took Excedrin Migraine and others, and seemed like if I had taken some the spasms weren't as common. Skipping meals could bring on spasms also. Great news your Mom could pull strings, members here would love to contact her and have her give insurance secrets. CA is the kingdom of resistant HMO's (IMO), but I think others have issues with HMO's also. Most of us have better luck w/ PPO's, really they don't seem to give any problems. I just guessing, but usually younger ones come back quicker than us oldies. The anesthesia can make you tired, even for months, but most pop back pretty quickly from the lap surgery. My gi mentioned he somewhat thought that for those where the symptoms come hard and fast that the treatment is more effective. No real studies, especially since the newer techniques, but that was true for me. Some members here seem to get by struggling for years and avoiding treatment and adapt somewhat. I think I would have died of thirst and starved to death. Everyone is different. It is possible some get over a hump in the misery maybe, and the esophagus stretches and maybe the spasms lessen and then they can go on for years. That happens with misdiagnosis and more common in the "old" days. Are you finished with school then? Seems early to our schedules. I don't want to scare you, but sometimes right after surgery the spasms can increase, then taper off. Maybe only one or two really bad spasms even while in the hospital but they seem to taper off pretty quickly and usually get better than before treatment. The doctors don't often warn you about that and they still may do other tests to make sure it is only a spasm. Seems like many doctors disagree about whether surgery stops/lessens spasms. They seem to just shrug their shoulders if you still have them. Sometimes they diagnose achalasia with a lot of spasms as vigorous achalasia. There isn't any difference in treatment. Just that your esophagus spasms often. I had that, but my spasms didn't send me to the ER ever. Sometimes after surgery for a few years, the spasms could feel like it feels when you ovulate (close your ears guys), but I generally didn't notice the kind of constant ones that much. I had surgery 4 years ago and my spasms are much much less and fewer, although I still can get them for days in a row, then not for a week or so. They only make me miserable for a few minutes if I catch it right away, at the most about 30-45 minutes if I can't get to water or food. Sandy > > > > >> > > > > Hi,> > > > > I'm new to the group and new to Achalasia. I started showing> > > symptoms> > > > > when I was 18. When I was 19, the dysphasia was getting worse > so I> > > > > talked to my doctor about it again. In December they did a> > > dilitation> > > > > which didn't help and in January I was diagnosed with > Achalasia> > > when I> > > > > had a Manometry. Then in February I had the Botox injection > done> > > > > because I cannot afford to miss school to have the Myotomy. > The> > > Botox> > > > > injection worked for a couple weeks, but now the spasms are > more> > > > > frequent and my chest hurts all the time. I'm scheduled to > have> > > the> > > > > surgery May 19th, I've met with my doctors and surgeon many > times> > > and> > > > > did quite a bit of research on the internet, but I'm still > afraid> > > of> > > > > the surgery. I don't think my parents really get what is > going on> > > and> > > > > none of my friends show any interest in it either. Well that's> > > kind of> > > > > a lie. My best friend has been here with me through it all, > she's> > > done> > > > > research of her own on the subject, but I don't know how to> > > educate my> > > > > parents and my siblings. They don't show any interest and I > hate> > > > > talking to a brick wall. How do I get them to understand what > I'm> > > > > going through?> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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