Metaplastic Carcinoma
Comments
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Hi Judy,
Well, I guess this is payback for an easy infusion day. I'm feeling really crappy today. But, if I just sit around, it seems to be OK. I'm not nauseated, just have stomach discomfort...seems better if I munch on a cracker every once in a while. I think it may be the decadron. We'll see tomorrow when I go off of it. Otherwise, it's just bad fatigue. When I sit for awhile, I start to feel better, but then when I move around, the bad feelings come back. Guess I'll just 'go woth the flow'.
If there is anything I've learned in the short time since my diagnosis, it's that noone can truly understand our feelings and fears unless they have been there and gone thru this. Having been in the medical field, I know how easy it can be to get detached from patients and see them as 'illnessses'. Once we had done everything we could, our job could be done. So many docs (and, regretfully oncs) have that notion and cannot see why the patient can't accept that they are fine or have anxiety over the future.
It's one of the reasons I left nursing in 1991...total burnout. We each got a 'kick in the butt', a life-changing event that will never let us go back to where we were. So we have to forge ahead and build a new kind of life, ever conscious that that life may be ripped away as well. I sort of chuckle at those who have told me, "Well, we're all going to die someday. " They haven't got a clue what I'm thinking. I'm not thinking about dying...just how to create a life knowing I have an uncurable illness. I'm sure it may help to talk to a therapist, but only of you feel you need to. Some people want to have you talk to someone else so as to not deal with the issues themselves. I like my onc, but she's not one to want to deal with the emotional aspects of this illness. I can't imagine not connecting with my patients emotions. Those who can't miss out on so much.
OK, enough of my soap box. As you can see, it's a subject very near and dear to my heart. I just hope I can be doing as well as you after all you've been through.
I think I'll just lie down for awhile now. By the way, I'll bet that was Ativan they gave me pre-med since the drug I couldn't remember did begin with an "A". Prunes are good and are doing the trick!! lol
Jan
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Hey Jan....I hope you're feeling a bit better. ....keep on resting and taking it easy. How many treatments are you going to get? Not sure how it works with TC.....
I must admit, I am not a huge fan of doctors in general anymore.....I have learned the hard way that doctors do not know as much as I used to think they did...have lost much faith in medical care in general. My oldest daughter got sick while still in high school, chronic abdominal pain...she finished high school at home, and things just got worse and worse. Long story short, she has endometriosis which causes the severe pain 24/7....she then started throwing up everything she ate about 2 years ago. We took her to U of M gastro (after many other specialists and doctors just wanted to say she was stressed, or anorexic, etc). She dropped from 115 lbs to 79 lbs within 4 months, so she went on TPN, and has been on TPN ever since. Since then, we have endured more tests, doctors, hospital stays for PICC line infections....poor girl. We switched to Henry Ford Hospital a few months ago, and lo and behold, they ran the test we begged for at U of M but never got. She has a rare condition called Superior Mesenteric Artery Syndrome, and Ehlers Danlos syndrome. Her artery is crushing her duodenum, thus the vomiting. We are now trying to find a surgeon to help her, but no one will...it is very rare, only 500 or so cases in the U.S. But what I learned over the last few years is that I don't trust many doctors, that if you are a female, they will almost always blame stress or anxiety for most anything. She is 23 now, and has managed to gain some weight back recently, although she still cannot keep food down (but still eats anyway, lol).
One thing I will say is that for every idiotic doctor we have encountered, most of the nurses we've dealt with have been much more caring. My daughter is very sensitive, so a good nurse who cares means alot.
So I am glad that I like my onc well enough, but tend to get defensive about 'mental' issues, and probably have been denying that I am having a bit of trouble with this bc stuff. I am too used to trying to be strong for my family, I have fooled myself a little, lol. Stressed? Of course I'm stressed! Do I think my stress is related to every physical symptom I have? I tend to think not, but then again I could be wrong.
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Hope you're doing ok Jan : )
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Hi Judy,
Have had a couple of rough days here. Do you think it may be because I'm older? (61) Lots of stomach pains and very very tired. Yesterday, I started getting a back ache (Neulasta?), and I'd read where someone took a pain pill and it helped, so I did. It did the trick. I seem to get better if I eat a little something, but then the nausea sets in. So I take a compazine and go to sleep. It may be miserable, but it IS controllable. I'm really quite lucky, I think. I used the Biotene mouthwash recommended for dry mouth and now I've got so much throat congestion..think I'll switch to lozenges or lemon candy. Just afraid of getting thrush.
You really HAVE been through the wringer, haven't you? I hope your daughter can find some relief from her illness. I've learned that whenever I go to the doctor, I'm very careful NOT to give any clue as to what may be wrong with me, cause then most will settle on what YOU think it is and not really hear what your saying. So now I tell everyone just tell them your symptoms and let THEM figure it out, if they can. Let's face it, medicine has come down to being little except about money, and when that happened, the patient lost out. You (and everyone else) HAVE to be your own advocate now and have as much information as possible before even gpoing to the doctor. And when the illness is rare as in your situation, how can you do that? I do not believe all your issues are due to stress, and even if they were, you certainly have legitimate stressors. This is not mental issues. Stressors can lead to depleation of seratonin which can lead to depression. It's proven that depression is not a "mental" disorder, but rather a chemical inbalance that can be corrected with medication. I was on an antidepressant for awhile (Celexa), very low dose, and it did wonders for me. The problem is that many folks equate that with drugs like Prozac, etc, and they really are totally different categories. I hate taking pills, but during that period where I was worrying about everything, it was a Godsend. Not suggesting you need this....just throwing it out as information.
I'm supposed to go get my wig today. SIL is taking me...don't think I could do it alone. I don't really feel like going, but if I don't, I may get caught without one.
Lousy rainy day today....probably heading your way. Sorry!
Have a good week-end.
Jan
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Hi Jan, glad to hear you are ok, sorry to hear you don't feel so well : ( I don't think it is so much to do with your age, it's just that chemo will make you sick, I don't think there's any way around that. I was nauseous alot, and then when food started tasting different, well for a while all I could stomach was chocolate milkshakes, lemon water, and scrambled eggs with toast (which I usually hate)! They say you will start liking foods you usually don't eat, and they were right!
I did have a problem with some mouth sores, not at first but about 1/2 way through chemo. Boy, did that hurt more than I imagined it would. They cancelled my chemo one week because of it, said they didn't want me to end up with a lot of sores. I didn't like the Biotene either, ended up using salt water, and a product I found called Peroxyl by Colgate really helped alot.
Thanks for the advice on doctors...I agree with you totally. I haven't decided if I need or want to see a therapist...many days I am just fine. I guess I'll just wait and see, for now.
I ended up with cheaper wigs bought on ebay, and wore them at first, but frankly didn't find them comfortable or realistic enough (the more expensive ones would probably be better, but my insurance didn't cover it). I wore head scarves for most of my baldness period, it was much more comfortable for me (even though I swore I would never wear one, lol). I hope your wig is comfortable for you.
It is raining here, too, but most of the bad storms skirted around our area of metro Detroit, just barely!
You have a good weekend, too!
Judy
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Hello Judy/Jan: I've been reading your messages to one another and feel like you are reading my mind much of the time. I'm new at this and have corresponded a couple of times on another thread, but i really like this one better. I hope neither of you mind that I also join in on discussions, many of which are between the 2 of you.
Judy: you may remember me from a couple of days ago when you sent me a personal message and i had to admit that i didn't know how to get to the place to read it! still searching!! but, had 3rd surgery yesterday and am staying w/my daughter who is much more tech 'savvy' than I am so she can show me what to do w/personal messages.
Just fyi....am divorced 59 year old; 2 grown daughters & 3 grandsons. Was diagnosed mid-April and have had 3 surgeries in an attempt to eliminate as much of the abnormal cell activity as possible before chemo begins next month. surgery yesterday took my left nipple & aerola, but i still have a breast!!---on the other hand, am wondering now if i should have just said....'take it'. will leave that alone for now because it's apparent to me from your comments and others that just gathering the courage to forge ahead regardless of this beast we have takes a whopping amount of energy, so, no use in thinking about what if's or should have's, etc. at this point.
do you mind if I join you guys?? do u know what's up with the only log in 5 times per 24 hr. period deal???? hope to hear from you--
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dsa: of course you can join us here! I hope all the MBC gals can find us here, and that this thread doesn't die off like the the older MBC threads did....I'll keep posting on both so it is easier for others to find us.
I hope you are feeling ok after your surgery, make sure you take it easy : ) The decision to have a lumpectomy, or mastectomy, is a personal decision each of us must make....I went for the bilateral because I had already had DCIS in the other breast back in 2004, so was already missing part of that breast anyway. I just hated the mammograms and the stress of having them, so decided to just take them both. It has turned out to be a really tough road to take though, body image-wise.
Jan: thinking of you, hope you're getting lots of rest, lots of fluids, and are feeling ok.
The limited posting will stop after you have been a member/posted for a while. It is just at first, to keep spammers away I guess.
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HI Judy and dsa,
Welcome, dsa. As Judy said, I hope this thread keeps going as we MBC gals seem to be few and far between.
It's been a rough 3 days here.....terrible stomach pain (not nausea) right below the breast line. I finally just took some Mylanta (I know, I should have called first..hope it did no harm to the chemo, but it sure made me feel better.)
Then the nausea set in, so I lived on Compazine for awhile. I was so afraid of getting dehydrated, I was also having to take lomotil, too, to prevent that fluid loss. It seems if I just laid still, I would feel a little better...so that's what I did. I feel queezy today, but overall, so much better. At least I can sit up. lolYou know, Judy, you are so right about the lumpectomy/mastectomy being a personal choice. I just wish I'd met you before I made the choice I made. I'm very large breasted, and I didn't have a choice cause the tumor was large. I was never broached about a bilateral mastectomy, and back in my oncology days a BM was not even a consideration unless both were affected, and then, it was 2 surgeries! I sorta blame the onc and the RN who worked with him and did all the 'teaching' cause mentally, I was in no state to think, "Gee, I wonder how I'll look with 1 and would I look better with 0. As it turns out, I wish I'd have had a bilateral, not only for reoccurrance issues, but because I have about a small A cup on one side and a D cup on the other. OH, well, too late to worry about it, but it IS something I would tell someone else. I just wasn't on my toes enough.
dsa, I hope I didn't put you in a bad frame of mind about the chemo.
These days were rough, but not unbearable, and if I can get through them, so can you. Judy is our been-there sister who guides the way. Her advice is invaluable. Next time I post I'll put down some of the things that helped me, but for now, I'm going to sign off.You gals have a great week. It's terribly hot here in Chicagoland! TG for air-conditioning.
Jan
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Hi Jan, I do remember getting terrible heartburn with the Taxol, ask your onc, you might be able to take Zantac or something similar on a daily basis to avoid it. I took Zantac 150s.
One is rarely able to make educated choices at the beginning; I have found that you are in such a horrible mental state, and you have doctors throwing their opinions at you...it is hard to absorb it all, more or less make a decision. I felt that way with my first diagnosis, it was all a blur, and looking back now, I probably would not have had the radiation, based on what I've read since. I always tell people, you have some time to do some quick research before making your decisions. Granted, with MBC you don't want to take too long since it grows so fast though, but being my 2nd time, I knew pretty much right away that I just wanted a bilat.
It is going to be sooo hot here, too, all week long. As much as I hate AC, I suppose I'll have to turn it on for at least a few days, my daughter can't stand the heat. It doesn't bother me as much, I didn't have air until I was 33 yrs old, and love having my windows open.
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good morning judy/jan: good to see your comments. Judy, I know what u mean about the ac..i've not turned mine on either but, it's been hot enough here to do so. just keep my ceiling fans going at hi speed; however, it's predicted to be high 80's-90's here all week & the humidity is all but suffocating, so i imagine i'll break down and flip the switch.
Jan: sorry about your stomach/heartburn discomfort. you know, if women like the 2 of u who have either had or are going thru treatments could sit and write a book, it would be a legendary one! all of the physical difficulties, challenges, daily illnesses, decision-making, family issues, medical terms/definitions, types of medicines & definitions w/associated frequency of use when connecting to chemo treatments----you get the vision, right?! the book would either end up being a huge one or would be a 'series' of books w/chapters devoted to specific topics, etc. of course, the down side is that it would require updating---and who has time for writing 1st editions or those afterwards when the authors are fighting for their lives and that of their families?!?!?! If it isn't obvious, i love to read and gave thought in a 'previous' lifetime (when i was younger and didn't know better) to being an editor.
anyway, comments by both of you on this thread & others are clearly helpful to those of us just beginning. and, yes, i understand that this beast doesn't affect 2 people the same way, nor does treatment.....a book was just a fleeting thought of 'aha'!
Jan: in hindsight, why would u not do radiation?
came out of 3rd surgery friday w a left breast but no nipple/aerola. my port was used for the 1st time after only having it in for 1 week. the little nurse tore me up trying to get that dang needle in and now it looks all infected and is swollen. i wish i'd stopped her and just said put that needle in my vein and be done with it!! BUT, we think the medical people know better, right? there are moments when i think maybe i should have had the breast removed, altho it was never mentioned by either my surgeon or oncologist. i believe it's because my lumph nodes were clear, thank God. but, the % of recurrence w/in such timeframe (2-3 years out) leaves one to wonder if taking everything might improve the odds of never seeing going thru this again---------i suppose one could say there's not necessarily a 'right or 'wrong' decision when made at that moment, it's only in hindsight that the 20/20 perfection kicks in.
what does one take to their 1st chemo treatment and how long might it take? can i get up and move around...am i going to be sick during the treatment or right afterwards? will i be able to drive myself home? those are just a thumbnail of the things that go around in my mind at the moment. i'm sure my nurses will tell me, but i'd like to hear it from someone who's 'been there'-----can u guys help me? any other advice for the 1st couple of times? i only have to drive about 1 &1/2 miles (not busy highway) to get to my hospital and the attached oncology/cancer center---will that make a difference?
i see so many names of medicines for different illnesses that women fact during treatment...i just wish they were all written down under topic headers....those of us who have no clue could at least scan the list & see how different people were affected and would perhaps have a better position on being able to ask nurses about those medicines!!
can u tell, i'm all about 'learning' this morning?! have taken off work due to surgery--guess i have too much time on my hands!
thank you so much for corresponding ! will check on u later--dsa (deb)
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Jan: I know you're AWOL because you probably feel like crap. I'm thinking about you and hope you feel better soon, and that you're ok.
Deb: I didn't turn the AC on today, I think it hit 85 here in Michigan, but the next few days will be even hotter, so I guess I'll have to turn it on. That's funny, I often thought I'd be a great editor, even looked at jobs for editing...I have my teaching certificate (I was in college my first time with BC in 2004), but can't get a teaching job with all the lay-offs here. But I am one of those who is constantly proofreading everything I read, lol...English major. A book would be quite the undertaking for sure!
That was me who said I wouldn't do the radiation...that is because DCIS was relatively 'new' back in 2004, and since then there have been many articles about it being overtreated. I did an interview for an article for Cure magazine in 2005 that touched on how to treat DCIS. Some wonder if just removing it is enough.
It's funny how even the doctors differ on treatment/surgery...mine was totally in agreement to do a bilateral, didn't bat an eyelash when I said that was what I wanted, just nodded in agreement. Probably because it was my 2nd bc. Not sure removing them improves recurrence chance, since it appears distant mets is more likely. But my onc said 1 in 3 chance, so that leaves us with a 2 in 3 chance of no future occurence, right?!
I read the chemo list posted here, it is really long...but came to realize that the chemo department has snacks, drinks, ice cream, etc..so I didn't need to bring that. I brought water, drank it prior to each chemo and after all week long. I brought my laptop, wouldn't have ever gone without that, lol. And that was about all I took with me. They usually want you to have a driver since the pre-meds make you drowsy. I was not sick during or after chemo, usually 1-3 days later. But I have a friend who was sick during her chemo, so you never know I guess. You can get up to use the bathroom, but usually just relax during the treatment.
Meds I got: Premeds for chemo tx: Benedryl, steroids, emend (for nausea), atavan (relaxes you). For at home after chemo: steroids for 2 days, compazine for nausea. Took Zantac for heartburn during Taxol. Used Xanax for stressful days. That's about it. No major side effects from these meds EXCEPT the steroids, omg they made me so hyper the first day or two, got major housecleaning done, then crashed after 2 or 3 days.
Talk to you later
Judy
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I too have Metaplstic Carcinoma and have just finished my chemo on the 6th of May. Was dx on Nov. 17 had surgery on Dec. 2 port went in on the 6th of Jan. started chemo on the 16th of Jan. My bs was invovled in a study of 1,000 patients and of tht group only 30 had our kind of cancer. So we are in a rare group.
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Hello all, and welcome Laurie.
Now we are 4 active posters! I, for one, find that so comforting. One of the things that bothered me in the beginning of this 'adventure' was the rarity of the diagnosis. No one I know had had ever heard of it. And after the pathology report on the nodes came back as negative, I was glad, of course, but I also knew that negative nodes is very common in MPBC, since it tends to metastasize through the blood stream. I felt pretty much alone with the "Oh, that's wonderful. You'll be fine." comments. Don't misunderstand. I appreciated the support so much, and eventually just gave up trying to explain this bc to folks.....just smile and say thanks. But it left me feeling like....'nobody understands'. I don't feel like that anymore. Thanks to you!
As you can tell, I'm back on my feet again and finding it hard to believe that just 36 hours ago I was thinking I couldn't do this again. Sure I can! Because now I'm armed with the 2 things that will make it better...knowledge and experience. I actually feel pretty good except for mouth and tummy issues which are improving.
Ah, the great A/C debate! DH and I are at opposite ends of the spectrum. He's hot, I'm not. So, since he's been so good to me, the A/C went on yesterday. I'm like you, Judy. I like windows wide open and fresh breezes! Sweaters are for winter. lol
And, BTW, does this retired history teacher/nurse have to watch my writing skills now with you 2 editors here? lol English wasn't my forte, and I never took a typing class in my life....but then, you've probably figured that out. lol
Deb: I was against radiation at first. I'm to have 30 days after my 4 rounds of Taxotere and Cytoxan. As of now, I've since decided to go for it. I'm one of those folks who can't stand any doubt, and so my thought is that if I don't go through with it, and there is a recurrance, I'll put myself on one big guilt trip. If I have the radiation and there is a recurance, I won't be so hard on myself. It's such a personal decision and depends on each persons make-up and reactions. I still have 3 months to think about it and make a final decision, but now, I'm leaning towards 'yes.
As far as the first treatment goes, I had the same premeds as did Judy, although I believe our chemo drugs were different. I took along my Sudoku book (yes, I'm an addict!), and did a few puzzles, but the Ativan made me sleepy. My DSIL burned a DVD of Christian music for me which is just awesome, and so I closed the book and listened. I fell asleep and slept for 1 1/2 hours.
I live 12 miles from the onc, so I couldn't have driven home safely as I was pretty woozy. You'll have to see for yourself how you feel afterwards. You have such a short distance. But you may not feel like driving. I would suggest having someone with you the first time, just to be sure. Then you can judge the safety issues. Remember, in this no-tolerance suit-happy society, you never want to be in an accident under the influence of ANY drugs that can cause drowsiness or sleepiness. Even if it's not your fault.
Since this post is getting rather long, I'll wait till next time to post some of the "things I learned" in Chemo 101.
Till then, have a great day and go out and smell the roses!
Jan
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Hi gals! One thing I wanted to clarify: I am not opposed to getting radiation, just was unsure it was necessary for my DCIS in 2004, which is Stage 0 bc....I was not given the option to have radiation with the MBC, I did not fit the 'criteria', I think my tumor was too small by just a smidge...
Jan, I'm glad you're feeling better! Great attitude, you CAN do it again...but I know how you felt, I wanted to quit many times when I was at my worst, especially towards the end of the A/C chemo. I'm glad I never have to do the "A" ever again, it caused scary problems like racing heart and shortness of breath if I even took 5 steps across the room.
Don't worry, I never 'proofread' here....I do get a kick out of reading Craigslist ads, so many errors there, lol...I've even used those ads as student lessons..correct the grammatical/punctuation/run on sentence errors, lol!!! Online articles, newspapers...you'd be surprised at how terrible some reporters can be in their writing!
Around here, the AC battle is between me and my daughter, she has the "hot" room, facing south...she hates summertime, I love it! So I'm off now, not to smell the roses, but to dig out my flower bed....stupid grass has invaded it beyond repair, so I'm starting over. Frustrating, since I know the grass will be back eventually and I'll be doing this again.
Judy
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Shelly,
Another point, it's always nice to have a support person with you no matter who that is . My older sister has been wonderful throughout this whole thing. She's gone to aqll my appointments since I was dx and I would have totally lost it without her. She helps me remember all the questions that I wanted to ask even if I have them written down and even asks some that I didn't think of.
My treatment center has sodas, juice, puddings, sandwiches. There are a couple of fast food restarunts, and my personnel favorite, Subway. Good luck with your treatment all.
My name is Laurie and the R is my middle intial.
On another note. If you have a chance to attened a class called LGFB (stands for Look Good Feel Better) I would recamend it. It's fun and infomative and we all need some fun in our lives.
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good evening: hope everyone has had a good day, free of se's of treatments, free of pain, free of stress, free of dr. appts, free of challenges of any kind!!
laurie: thanks for the reminder about the lgfb classes. i've read about it but haven't asked if there is one here where i live or perhaps one closeby.
judy/jan: both of u made mention of pre-treatment meds...that were given/taken for specific reasons----so that must mean that the actual treatment may may me sick while it's bled thru my body, right? not to mention what it will do afterwards. and, steroids??? i darn sure don't want to look like i'm some kind of pumped up old lady from taking steroids
. so, it's possible to not be able to eat or keep anything on your stomach and that would bring about loss of weight. but, don't steriods make people gain weight, right? i've read about the importance of drinking water before, during and after chemo--basically all the time. i hate water!i made notes of the meds that u mentioned judy.. will look them up.
jan: i don't know what kind of chemo u were on, but i think i'm scheduled for ac+t... guess i'll find that out when i meet w/onc after pet scan, echog, etc.
i had a heart attack about 3 years ago and it seems that one of those chemo meds is not good for the heart.....need to go back to all of my notes----too much to remember.
have a good day tomorrow!
deb
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I never went to the LGFG classes...just never got around to it. I hear they give you gifts, lol.
Deb, yes, the actual chemo can make you feel sick, the drugs do help though. I didn't get puffed from the steroids, just really red lol. I lost lots of weight on the AC since I was so sick, but gained more than I lost on the Taxol. I was a bit underweight when I started chemo, had lost weight from the stress of my daughter being sick. I started chemo at 118, dropped down to 110 during AC, and ended up at 125 at the end. And that's where I've stayed. I hate water too, but adding a lemon wedge really made me enjoy it, I was so dehydrated from the chemo. It is the "A' that can be hard on the heart....I had AC/T too.
Jan: thinking of you, hope you are still feeling good!!!
Judy
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Good morning ladies,
Day 10 and I have to say other than being fatigued (who isn't?) and a few GI problems, I'm feeling really good. It feels so good to be up and around, although I do tire easily. This "I'm as tough a nails" gal has found out she's a bit of a thumb tack! lol
I sat outside this morning. It was such a beautiful morning. Two little mostly yellow birds (finches?) came and were drinking from the birdbath. I never was much of a bird watcher, but they were so pretty. And then a couple robins started what I only assume was some sort of mating dance. He would flit about above her and she would just move away. He then would walk really far away from her in the opposite direction, she would turn, and scurry up to him and the whole thing repeated itself several times before they flew away. Quite funny! HE seemed to be the one being hard-to-get, or maybe I have the sexes wrong. I always thought the male of the species flashed around to attract the female.
Judy: So how is your garden project going? Were you able to finish? Do you have perrenials or do you plant every year? DH and I have decided to just have tomatoes and a few marigolds this year. My onc says, "No digging in the dirt". Ever heard of that? I suppose it's because of the bacteria, etc.
Laurie: You were so wise (and lucky) to have your sister with you. Mine is miles away. But my SIL is one of my best friends, so she came with us to our first meeting. Her presence was invaluable. You're right. You just don't how you'll react, so that extra set of ears is so important.
Your tx center must be a lot different than ours. We have just one big room with the chairs arranged in a large circle. Very comfortable chairs, although, at first, I was concerned about the lack of privacy. I discovered that I paid little attention to the others opposite me (and presumably they, me). I spoke briefly with some, but almost everyone was pretty much doing their own thing. Do you have a private area? The reason I ask is that we're discouraged from bringing in any foods that have any odors because we have to share the area with those who may have nausea. They have a small selection of stuff (soda, juice, crackers, etc.) . I brought my own Sierra Mist and animal crackers. I think they would have frowned on Subway
...depending on what's on it, it can be quite "odiferous" lolIs Look Good Feel Good through ACS? It sounds really good, and I'd like to try it. Do you get to bring a friend, or is it just for patients.
Deb: The pre-meds are to prevent you from getting sick/having an allergic reaction during and after the tx. That's not to say it COULDN'T happen, but, in my case, the tx was fine. I felt nothing but a little woozy afterwards d/t the Ativan/Benedryl which relaxes you.
The steroid (Decadron) did not cause any problems for me. In fact, it really helped the arthritic pain in my joints...totally pain free right now! I gained about 3 pounds with the decadron (before tx and up to day 3, then had a huge fluid output and lost it all. Never felt bloated or looked heavier. However, as Judy has said, the energy let down on Day 4 and 5 (when you go off the steroid) was very noticeable. Of course, you have a double whammy then of the chemo and abruptly going off the steroid. Judy also warned me about the "decadron red', a flushing of the skin, so don't be surprised if you develop a really healthy looking sunburn. lol Painless, and it goes away in just a few days.
I love water and drank it by the quarts before chemo. Afterwards, I couldn't tolerate it except when mixed with lemon or weak Crystal Lite powder. It had to be in a glass (not plastic) and with a straw (which IS plastic...go figure?)
My medicines are Taxatere and Cytoxin. Adriamycin is the chemo that might cause heart issues. Talk to your onc about it. It's not as bad as it used to be.
Well, ladies, I hope you all have a really good day. 'Talk' to you soon.
Jan
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Judy: I think we must have been posting at the same time. I didn't see yours till I submitted.
I'm really feeling pretty good, and better every day. Yeah! Almost 2 weeks ahead of me before I have the next tx.
Jan
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Some of the things I learned after my 1st T/C tx:
-drink, drink, drink
-small frequent meals, even if you don't feel like eating. The product 'Boost' was a life-saver for me. The chocolate tastes a lot like SlimFast, if you've ever tried that. I found it quite tolerable, but had to drink it in 2 sittings. It's much more palatable than Ensure and provides 360 calories and lots of vitamins and minerals. I recommend it in a very cold glass with a straw. Didn't try any other flavors.
-you have to find what works for you re food. I made oatmeal before the tx, but couldn't stomach it afterwards. DH made me instant grits made with fat free milk which I tolerated well. That and mac n' cheese (with just the barest amount of cheese needed.) Also, I added rice to soups for extra nutrition and calories. I've always been a good eater, and I was amazed at how little food I was taking in at a time. I lost 10 pounds last week but have already regained 3 of it.
-use a H2 antagonist drug (Pepsid, e.g.) if you have stomach pains. I had no nausea to speak of, but the epigastric pain was awful on days 5-7. Ask the onc for something stronger if that doesn't help.
-re the more sensitive issues- Use flushable baby wipes after BMs, and either wash or use a squirt bottle to cleanse after each time you urinate. I used Immodium (generic brand) for diarrhea, and it worked well.
-oral care is a must. I'm lucky in that I had a plaque problem and a year or so ago the dentist encouraged me to invest in one of those Philips Sonicare systems. It was either that or oral surgery! No longer have a plaque problem, and the system has a brush head UV cleaner so I can clean the brush everyday. I tried the Biotene m/w, but couldn't tolerate it. I brush 4 or 5 times a day, and so far, that has done the trick.
-the 'Chemotherapy, Before, During, and After' thread has a really long list of hints. You might want to check it out, but, like Judy said earlier, I'm glad I didn't go out and get all those things. It's just a nice list you may want to print or consult as needed.
We all know that everyone is different, but I hope some of these things may help. I had a rough time on days 5,6,7, but recovered quickly to feeling pretty good by day 10.
Jan.
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Good evening Ladies,
I suppose sometime in June I will start my chemo. I head to the Drs tomorrow and hope to get a lot more info on this MBC, I plan to ask a lot of questions. I have no idea just what effects I may have from the chemo & radiation treatments, so your posts gives me some idea.
I thank you all for sharing and good night.
BIG HUGS to all!
Dawn
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countrygal,
the tx areas where I went had 4 chairs in each area but they were seperated by curtains like in an ER. each chair has it's own TV with limited channels. You could bring in your own movies. all in all it was pretty nice. And yes the LGFB class is done by ACS.
They do some stuff with makeup and you get a bag of different make designed to go with your skin color to take home with you. My sister went with me but the only ones who get the makeup bags are the cancer patients.
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hey girls: thanks so much for all the pointers/suggestions in your comments in previous posts. everything you say is always helpful to prepare those of us who haven't been thru the se's. it's awful that anyone has to endure it, but i am thankful that everyone on all these threads are so willing to share, encourage, and just be a listening ear from afar! each of you have such specific comments and perfect explanations about various issues that i truly believe i can grin (or NOT) & bear what's ahead. i can just keep hopping back to what u've all said and find something that will apply to whatever i'm experiencing during treatments! information is power....so i always feel more empowered after reading your messages!
jan/judy: i've compiled my grocery list for 'chemo time' with all of the things you've mentioned and several more from the 'chemo, before, during, after' threadwith. i won't get all of it, but i saw some common items mentioned thruout that thread and what u've said, so i feel confident about buying those things. a 2nd list will be for the 'if my 1st list of purchases don't do the trick' & those items will be bought later
. laurie: took your advice & contacted oncologist office today about the look good, feel better program--next one isn't until september, by which time i don't think ANYTHING or ANYONE could possibly make me look good or feel better, regardless of the goodie bag that is given. i will probably start chemo mid-june and by september i'll be wanting to stay under the blanket 24/7. got included on the list of those to attend, even though i hardly see a purpose by that time.
am going next week to visit the chemo facility/ room or whatever it is. may get back on here afterwards and have a lot more questions.
dawn: hope u rec'd some news today about your treatments, etc. share them w/us. i'll go ahead and start a june chemo group thread--you're interested in it, too..right?
judy/jan: i hope both of u are feeling good/better today. seems like you've had some 'feel bad' challenges in days past. Watching birds and/or gardening, as you've both referenced, is a 'feel better' kind of thing--perhaps takes your mind (temporarily) off this beast that we have.
i have to just say again that everything you girls have written is so very helpful -- i know that i could never engage in a conversation with anyone else about all of this stuff unless that person was a veteran of this battle or still fighting it like we are.
hope u each have a night free of pain and can enjoy whatever you are involved in----
deb
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One comment I'd like to make and it's just from my experience.Mine was that I was fine after tx but about the 4th or 5th day following it I got nausious and had loose stools not quiet diarriah but close for aout 3 days. This happen after all tx's except the last. After that one I got full blown diarrah on day 5 after tx and it lasted for about 3 days, Was very tired during that time. Did anyone else have a similar experience?
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Jan: I'm confused...you are 10 days from your first tx, and your next tx is almost 2 weeks away...how often are you getting chemo? It has been soo hot here, too. I did get my garden done, it took me 4 hours in the 85 degree weather, lol, but it looks so much better. Mostly I have perennials now, but I still do some annuals here and there. My onc never told me no dirt, but dirt can have a lot of bacteria in it, maybe if you wore gardening gloves??? Here's my small pond, when the iris is done blooming, I need to dig them out, they're too big.
The taxotere/taxol is what causes the heartburn, I didn't have a problem with it on the AC, but had a lot of trouble with it on the taxol. I also used the wipes but not the water....and really, the Peroxyl is excellent for the mouth, and helped me so much more than Biotene.
Dawn: hope your appointment went ok today. I am forgetful...which chemo are you getting?
Deb: glad we can help! I am feeling better today. After going to the cemetery, I went out to garage sales all day with my sister and dad. We go every thursday, I try to find things I need, which right now include a new pool pump (too expensive to buy new), and I always look for things to mosaic with. It is my hobby, although I don't get around to it as much as I used to.
Laurie: I did not have diarrhea at all...only constipation. did you encounter any others on your chemo thread that had that problem? We may have had different chemo's... I have so much trouble remembering who's getting what....
Well, off to bike ride with hubby, talk to you all later!
Judy
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Hi all,
Lovely cool evening and a beautiful Memorial Day week-end forecast for Chicagoland. We deserve it after that 90+ weather this week.
Laurie: Throw in horrible heartburn, and you've described what I went through from Day 4-8. The funny part is that I bounced back really quickly, and by Day 10 (yesterday) just had some minor stomach issues. Today was great!
Judy: My tx is every 3rd Monday X 4 txs. I think I fudged the math a little. Sorry for the confusion.
I love your pond. How pretty. I love the sound of running water. As a child, my family used to vacation on Lake Avalon which is about 30 miles west of Alpena. Our cabin was along a small creek, and I could hear the rippling water every night.
I posted on the other thread, too. Didn't find it till today.
Dawn: Welcome. Ask all the questions you like. We can all learn from each other. I would not wish any (and this type in particular) bc on anyone, but there is comfort having you folks to 'talk' to.
Have a good week-end.
Jan
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I was given toxotere and cytoxan
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Laurie: Hope you don't mind, but when I saw you and I had the same treatment, I looked at your biography. We have almost exact path reports, too. The only difference is that my cancer has a high mitotic rate which put it at a 9 of 9 on the Blooom/Richardson score/Nottingham modification. My nodes were negative which was expected.
My onc said not to put too much emphasis on the score. Yes, it's worse than say a 2-3, but it really doesn't change the prognosis that much because they just don't know that much about this type of bc. He has me very hopeful.
Have a great week-end.
Jan
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I had AC/Taxol, so I guess the chemo you had must have caused the diarrhea, mine caused just the opposite.
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Hello Ladies,
Sry for just getting to you about my appt yesterday, I posted my info on the other thread. I have yet to start tx, so some of your abbriviations are Greek to me... but I am a quick learner. I am all for using one MPBC thread.
BIG HUGS TO ALL!
Dawn
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