Starting Chemo in JAN 2007
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Melia - I hate the bra and prothesis. I can't get it off quick enough every night. I have to make a conscious effort to not fiddle with it and adjust it all day. It drives my crazy - and that is without the seroma. I can't imagine. UGH!
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Jan,
What are you going to do re the discomfort of the prosthesis? I don't want to go thru reconstruction surgery, but the idea of dealing with this seems discouraging too.
Melia -
Vicky, Thanks for letting me know, your right maybe they are the gassy SE I've heard about. I have Irritible bowel syndrome anyway, have had it for years. Sure does hurt though. But I have to say Taxol does seem easier than the AC. (knock on wood)!
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Hi,
Nancy,
I had an appointment with my primary car doctor the other day and when I told him about the gas and stomach discomfort during A/C, he gave me a rx for Librax. He said it is for IBS, it relaxes the stomach and also it good gas discomfort. He said it is also a relaxant and he suggested I could take it during the worst stomach days when I do not want to take ativan or when I am trying to pull back on ativan. I will ask my oncologist about it before I try it. Have you heard of Librax? It might be worth asking about.
Jan, It is not 1:10 AM and I can relate to that article.
Melia, One more. Way to go!!
Vicky, I had a lumpectomy and I was moving around in about 3-4 days. The worst thing was the anesthesia. It was much easier than A/C.
I will try to go to sleep now.
Viddie -
Hello to all of you! I haven't been posting on here for awhile because I've had so many other issues to cope with besides BC, but have been reading your posts and am glad to see that a couple of you are done with your chemo and ready to move onto the rads. Others are getting there. It won't be long now.
My white blood count went down this last time and I had to have the neulasta shot for the first time. I luckily didn't have the severe bone pain...just a general achy feeling, which seems to have passed now. That, and the fact that the sun is shining more, have helped me break out of my severe depression and I think I'm on the mend.
My last chemo before radiation on May 30th. Then I meet with the radiation specialist on the 13th to set up the rad program. When I finish rads I still have 2 more chemos to do if I complete all the chemo treatments. Right now, I'm wavering on that and will play it "by ear."
Congratulations to those of you who have finished and moved on and to those of you who have only one more left! You can now see the end of the road.
Rita -
Viddie:
Quote:
I do not want to go shopping, and seem to just look down now. I even find myself giving people dirty looks when I think they are looking at me. Shame on me!!!I have to get over that and hold my head high.
I am feeling exactly the same way. I swear that's why going to the gym is so hard. I get on the treadmill with my headphones on and try not to look at anyone. I really hate this whole aspect. I wish I could just get over it already. I have to pick up my daughter at school on Tues because she has science club. I really dread seeing all the other moms. I do not know many of them well enough to have told them but it's pretty clear that I'm a cancer patient. Just when you are okay with things, you have to jump another hurdle because this is no longer a private ordeal.
There's a local broadcaster who was dx before Christmas with stage 3. She's letting the public see the process through online journals and videos. I've found that I can relate on so many levels. The last one was about shaving her head.
http://www.thebostonchannel.com/health/10723820/detail.html
Amera -
Hi Vicky, great news on the tumor shrinking. I almost wish I had something to measure progress by. I had a lumpectomy for a 1.3 cm tumor, and a snb. I had the surgery on Thurs and was back to work by Mon. I was probably pushing it but definitely was back to myself by Tues. I mostly slept off the effects of the anesthesia. You will probably need help for a day or two because I was out cold.
The pain wasn't too bad. I don't think I took more than one percoset afterwards. The incision felt okay after about a week. I had to wear a loose sport's bra 24 hours at first. Bring one with you to the hospital. I was told that I would feel better once I put it on and presto, I did. Not sure how that works but a lot of the nausea and dizziness disappeared right away.
The snb took longer to feel okay. I was numb under my arm for about 2 months, but no pain.
I had a re-excision for wider margins. I had it on a Mon, and was back to work by Wed. much easier if you need to go that route.
Amera -
Melia - I guess I haven't thought much about the prothesis thing (other than how much I hate it). I got my bras fitted at a local shop and they did a good job, but I keep thinking that I should go to Nordstoms and buy a couple of more comfortable bras that I really like. I've heard that they will add the "pockets" for the prothesis to their bras for you. It would probably be a more comfortable option, but I've just been too tired to deal with it. I am planning on having reconstruction. I figure I've made it through two surgeries so a couple more will be worth it. Once it's over I won't have to deal with the prothesis anymore which seems worth it to me. I was really discouraged by the local plastic surgeon that I met with so I think that after chemo I'll travel a bit to find someone that can do DIEP. Although at this rate I'll be way to skinny after chemo.
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Hey ladies,
Nancy, I sympathize with you having the Taxol weekly, the gas seems to last all the first week so I imagine it doesn't ever go away for you. And yes, the awful cramping too.
Lynn, I do wear my wig occasionally and am glad I have it for times when I want to dress up or not get turtle looks.I live in a small town and am aware there is much gossip about me so I'm more likely to wear it locally. Otherwise I'm content in my scarves and little hats. I don't know if my wig looks great, it's bright red so I have fun with it.
Mrs. Shea, if you can get the port I would. I am small with tiny, hard to find veins too and there are more times you get stuck than just the infusions...they are always getting blood, etc.
Happy Vernal Equinox everyone! - Skye -
Hi,
Amera,
I think it is great that Kelley Tuthill is making her plight with bc public. I have been following her story, and I watched her on tv on Sunday night and I couldn't believe how brave she was to have her hair shaved off on tv. Wow!! She is truly an inspiration.
I am going to have a mastectomy either in late April or early May after A/C or in July, after the taxol. I had a lumpectomy, but since my pathologist misdiagnosed a second tumor and my 2nd opinion at DF picked it up, I have to go back in to have it removed. If they suggest May, I was thinking of a double mastectomy (if they let me) and have the reconstruction in July. I do not want to go through a lot of pain if I have to continue with taxol after my surgery. I would rather wait until July and have an immediate reconstruction all at once after chemo.
It seems that most of you do not like their prothesis. I didn't know it would be uncomfortable. That might be a good reason to wait until July.
Jan,
Have you looked into breast implants? It seems the easier route, but I haven't researched it enough yet. I will wait to meet with the surgeon first in early April before I make any decisions.
Viddie -
I just found this web site: http://www.chemocare.com/
I have not read it in detail yet, but it seems to contain a wealth of useful information. Wish I'd found it back in January! The managing side effects page looks especially helpful.
Viddie - about reconstruction, I am really struggling with my options. I have some weird thing about having plastic stuff in my body. I really want to avoid implants and especially expanders. The ps here said I would have expanders for 6 months. I just don't want to deal with it for that long. I'd rather have the longer more complex surgery than 6 months of expanders. But really its the plastic thing - it just gets to me for some irrational reason. The drain after surgery really made me crazy. It's also why I'm avoiding a port like the plague. My husband thinks I'm nuts on this issue. -
Here is a pic of me in "ol' Red" -- it is a freebie courtesy
of the American Cancer Society and a very nice area beautician who fits and customizes them on her lunch hour for cancer patients. She had to crop a lot off this one for me, and I find it reasonably comfortable. - Skye
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Hi all. It's snowing here as we near the first day of spring! Supposed to be better on the weekend.
Good news about the shrinkage, Vickie. Makes chemo seem worthwhile.
Jan, that was a cute article. Sleep is sure an issue. I find I sleep a bit better the futher I get away from a treatment - I think it's the steroids. But I take an Atavan nearly every night when I wake up in the "wee-wee" hours.
I had a mastectomy Nov. 10 and got my prosthesis Dec.15. After a week or two, I was wearing it all day and experiencing little discomfort. I'm a 36C - so not big or small. I've heard some larger ladies say theirs weigh 5 lbs (or just seem that way?) Since I started chemo I am sorer, especially the first two weeks. I go for a weekly massage, which helps as well. When I was diagnosed I said no reconstruction, but now I'm not totally ruling out. I want to see how I do with the prosthesis over the summer. I guess it's weighing a low-grade inconvenience and discomfort - that lasts for 30 years (hopefully) against a high-grade inconvenience and discomfort that lasts a few weeks.
I wear my wig when I go out, mainly I think because I'm vain! It's a little uncomfortable, but I find hats annoying too, and it's too cold to go bare. I will be glad to chuck it though. Last night I actually dreamed about hair products! How sad and weird is that! -
Regarding prosthesis. Mine is just ok. I have 2 different bras and they are not as comfortable as my bras I used to buy. Also, I'm thinking it will not be as easy during the summer with smaller tops and sweating. I don't want to deal with it for the next 30 years (hopefully). Also, I like certain bras and don't like that I can't just go buy a bra. I'm definitely doing reconstruction.
Lynn -
Rita,
Nice to hear from you, been wondering how you've been. I'm sorry to hear you've been having a difficult time but happy to hear you are feeling better. Please remember that we are all here for you.
I am not familiar with the treatment plan you have. I can imagine it would be very hard thing to go back to chemo treatments for a 2nd time after being done for a while. Is there a specific reason for this treatment plan? Is there a way you can have all the chemo now and then go onto rads?
Lynn -
Thought you all might enjoy a little laugh at my expense (warning its a little bit gross):
While my in-laws were here this weekend hubby and I took the dogs for a much needed walk. Since I lost my nose hair I've had a problem with having my nose drip frequently and sometimes without warning. I always make sure I have Kleenex in my pockets for these 'emergencies.' But, it was windy and chilly during our walk so my poor nose was basically out of control. I tried to keep up with the drips as much as I could but at one point an enormous stream of snot fell out of my nose without warning. Literally, there was a little puddle on the sidewalk from this gross gob that launched from my nose. Of course this happened at the very moment one of my neighbors drove by. Nothing like having a witness or two! Ugh - I was so embarrassed. We live in a suburban neighborhood where everyone knows each other. Like they aren't gossiping about me enough already!
On top of that I was eating lunch today at a nearby restaurant when my brother noticed a HUGE spider climbing up my back. We both tried to brush it off but it disappeared quickly. At that point we were thought there was a pretty good chance it was in my scarf. I really wanted to tear the scarf off and shake it out, but actually decided not to. I still don't know where the spider went. But I can't believe I risked having it crawl under the scarf rather than whip it off in public. I'm a chicken
I'm off now to pick up the girls from school. Hopefully I'll make it through seeing all the other moms without incident. -
Jan, my nose runs all the time too. I sympathize. However this is minor and you will laugh about it later. Im with you. It would take a scarf on fire for me to take it off in public.
Skye, I like your wig. It seems to fit your personality.
Thanks for all the lumpectomy experiences. It will definately help me plan.
Vicky -
tee hee Jan that is hilarious. I can totally identify. My nose has been NON STOP...it is totally gross. In fact, I have even (at times) been reduced to using my sleeve in precisely the manner that I have spent so much time teaching my children NOT to. What stinks for me, though, is that I am so susceptible to infections, so not only does my nose run constantly but it is always infected and I am always stuffed up. blech...green boogies on my sleeve
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Rebecca - I'm guilty in the sleeve area too. I'm always worried that my kids will catch me in the act. Saturday night I was about to walk out of the house to go to dinner with my husband when I happened to catch a glimpse of my shirt in the mirror...ugh...I had to change.
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Oh boy...noses...my nose was a constant source of embarrassment when I started chemo. Taxotere kills all the epithelial cells so a series of scabs were constanting building in my nose, which got very uncomfortable...hey this discussion is really getting gross...oh well, the joys of chemotherapy!!!
I had tissues by the bed but I was so embarrassed when I was fussing with my nose and I told dh, and he told me that this happens to him to him too when the inside air was dry in the winter...
I had another *very embarrassing moment* at a concert in one of the nicer auditoriums at the university last Friday. We were hearing Giberto Gil, a Brazilian guitarist. I was wearing a pretty scarf on my head with a knot tied to one side over my bangs with matching earrings and necklace--I actually was feeling a little festive. But at one point near the end, some people behind us started to leave. It felt like someone actually grabbed my scarf and it all came off, scarf, bangs, and everything. Maybe someone just brushed me very roughly...but there I was trying to get everything back on my head, the scarf half on the bangs hanging to one side...
After that dh sat with his arm wide around me, to fend off any passers by!!!
Mizsissy -
Oh, the nose runs. I have kleenexes stuck in every pocket of every coat and sweatshirt and pair of jeans. My big fear is that I'll wipe it in front of someone and it will be one of those bloody ones. Mizsissy you had my other nightmare, someone whipping off my wig or scarf in public. We are going out for a quiet dinner with friends for my birthday and now both things will be on my mind. Still, there are worse things. My neighbor who went through all this two years ago told me she lost both her big toenails six months AFTER chemo. She's the second one to tell me about toenail loss now, after that nurse. And both my thumbnails are sore. Anybody know people who did not lose any nails after full chemo? I'd like reassurance. BTW, the neighbor has been in full remission from stage 4 for 3 years while on Herceptin. She has been on it longer than anyone her doctors know of but it's working great. - Skye
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Oh lordy Mizsissy! That is my worst nightmare. I am constantly guaging the wind to determine what I will wear on my head. If it's really windy and I'm going to have to maneuver a grocery cart then I opt for the very tight winter hat. That way I don't have to hold it on my head in a gust. No one tells you about these things.
Oh and my eyebrows are still sort of there but you cannot see them. I've tried to draw them on but look like some sort of deranged drama teacher circa 1920. I do not have the magic touch when it comes to make up.
Amera -
Ahhh the eyebrows. Amera, I am terrible with the makeup too....I never wore it before chemo, and now I only do it to correct the gaps in my eyelashs. My eyebrows are another story entirely. They are hanging in, but pretty sparse. I have tried to correct them, but I wind up looking like I have caterpillars taking residence over my eyesockets. Not pretty. What is more annoying to me is how my mom INSPECTS them every time she comes to see me (once every few weeks). Wow! she tells me EVERYTIME "Your eyebrows are still there!" UGH. PLEEEEEAAAAASSSEEEE do not inspect my side effects! And let us please be truthful....I know, and she knows that my eyebrows look like they have been run over with a lawnmower.
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On the nose subject - if anyone else has problems with sores in the nose or cracked dry skin try some Aquaphor. It cleared my nose up in just a couple of days. If you haven't used it before its basically medicated vasoline.
Mizsissy & Skye - That's one of my big fears too - loosing the scarf in public. I'm glad Mizsissy that you recovered from it and had your husband to watch your back afterwards!
Skye - I have a friend that was on AC and said that her onc advised keeping her fingertips in ice water. That worked for her - I wonder if you could do the same for toes? She said that after chemo a couple toenails turned dark, but she never lost any. So there is hope.
Went in for labs on Monday and now my red counts are low. They gave me procrit. I hope it works. I have been unusually tired this time so I guess that is why. -
I'm loosing my eyebrows and eyelashes too. This morning when I woke up I couldn't see out of one eye because of all of the eyelashes that had fallen in overnight. I'm not talented enough with makeup. I am just going to let them go and look even more like a cancer patient. I'll just add it to the sunken dark eyes, clothes that are all too big, pale skin and bald head! Everyone seems to be waiting for them to fall out anyway - why is it that people take such an interest in the hair loss? I can't believe some of the questions I've gotten from friends too curious about WHERE my hair has fallen out and where it hasn't. I will have not a shred of dignity left by the end of all of this. Oh - and why is it that the hair on my arms is just fine but the eyebrows have to go? It's just not fair...
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Well all, update, the surgery went well. The port was not what I thought it was. I thought it would be something hanging from the top of my chest area. But it is actually under my skin, like a soda top or somethng. It doesn't hurt right now. But that IV OOOCHH!!! it was so painful before and after the surgery. They gave me something after the surgery which only lasted a short time. Couldn't wait to get out of there. I don't like the fact that they did it on the good breast area, if I'm going to be scared, keep it in one area!! All in all, things went well and my husband as left for Florida this evening. I feel the time away from each other will do us especially me some good.
Now the journey begins. Going to see my oncologist tomorrow to set up my schedule for chemo. I'll keep you all informed.
Thanks again for everyone's support.
Shey -
Shey - I'm glad to hear it went well for you. You sound more positive which is wonderful. I hope you are able to get some rest and relax a bit. Please do let us know how the onc appointment goes tomorrow.
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Jan
It is funny that people are so morbidly curious about the hair. I have dealt with it with judicious use of bald jokes...and I list the "plusses" e.g. I do not have to shave my legs (smooth as a baby's bottom, thanks!) and I am saving a bundle on hair products. Saves time in the morning too! I am actually losing the hair on my arms in patches...I found a big bald strip today that was not there yesterday. Strange. I, too am sick of getting eyelashes in my eyes. What a pain. -
I want to share with all of you the story of a new friend of mine. I saw her again this week and I always feel so empowered by her that I thought I should share a bit with all of you.
She has had bc twice. The second time she was also diagnosed with tumors in her liver and spread to her bones. She had to travel to a specialized center for treatment. Her doctors told her she had 6 months to live and that she should plan her funeral and contact hospice right away. In the meantime, they would treat her aggressively but they only hoped to manage her symptoms and possibly extend her life by a few months.
That was more than two years ago. Today she is very close to being cancer free (and has gorgeous hair). She is the most positive and optimistic person I have ever met (and she has some good competition in that regard). She really credits her positive attitude for getting her so far. -
Skye...I like ol' red! I think the color is very flattering on you. I'd never have known it was a wig...honest!!
Lynne....my oncologist thinks that I should have the radiation after the fourth treatment since my first surgery was in late November, followed by another surgery to get clear margins in late December. He thinks that radiation should be given within a certain number of days after the original surgery for best results. Although I hate the idea of going back for two more chemo sessions after radiation, I've just gone along with his decision since he's been around for quite a while and has a good reputation in the area. Don't know if this is a major issue or just his personal opinion. My CMF treatment plans takes longer than the AC plan. It involves 6 treatments, each spaced 3 weeks apart so I guess this might be part of his concern.
Good luck to any of you who are doing chemo or other treatments this week.
Rita
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