Starting Chemo in JAN 2007
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Skye, the Swiss town sounds cool. Have you ever seen Solvang, CA? It looks like a Dutch village. No people in costume, but.... it's really pretty. It's north of L.A., in the San Luis Obispo area.
Never heard of Solvang but it sounds cool. Rather like Holland, MI, perhaps?
- Skye -
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Skye, sad story about the woman in your chemo room. What do the doctors do, give her sister the treatment/prognosis info and not her? I can't imagine that happening unless you were dealing with a child. Actually, with all the privacy laws nowadays, I'm surprised they can tell anyone other than her personally.
So, is it like BC where if it spreads to another site it's still called BC? In her case, it's called Cervical Cancer no matter where it goes? Speaking of which, I am all for that new vaccine that prevents it. I know that's a hugely political subject, but....
Yeah, I thought about how great if she had had that vaccine, too. Such a preventable thing now, if people can take advantage of the vaccine.
As for the privacy, it surprised me too but the sister is pretty much T.'s advocate, she has no one else. The sister goes to all her appts. and sits thru every chemo, and with having rads and chemo at the same time, T. is often in a lot of distress. When i see her the staff is always mobilizing to alleviate her se's of the day. So I didn't judge, I think T.'s doctor needs to talk to someone who can register what he's saying, and that is usually T.'s sister. Very sweet girls, both of them. It's hard.
I also think you are right about the cancer always being described as the original dx, but metastasized. So for T., it's still cervical cancer with mets. That's what the sis tells me, anyway. - Skye -
On the luncheon photo: Woohoo! Scarf solidarity and pink power! Wonderful photo, so great to see the three of you there. Thanks for sharing that! - Skye
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Since they give me herceptin at the same time, they also add benedryl, ativan, and zofran to the IV. I fall asleep almost immediately and they have to wake me up when I am done. My DH tells me that I am totally drugged. I fall asleep as soon as I get home and stay asleep most of the afternoon, which is very unlike me. I would ask them to ease off a little on the drugs, but I do not want to have an allergic reaction to herceptin.
Skye, do they also drug you?
Viddie
Well, they WERE drugging me with all those same things, and I would also conk out within moments of the infusion starting and sleep the whole time. But now that I'm done with Taxol, I'm not getting drugs with the Herceptin. I did take 50 mg of Benadryl at home because of a rash on my hands though. Funny that it popped up in a different spot this time (last time was on my shins) - Skye -
Mel, I didn't remember that you still had surgery ahead of you; checked the spreadsheet though. (thanks again, Rebecca, it's so nice to have). I hope you can have it on time, but it is a big surgery with the reconstruction. I certainly hope your swelling goes down. You have had quite a time recently, poor baby.
I am off to bed, always so depressed the night before chemo. I feel like it's a lost day, by the time I have it and then am so drugged all I want to do is sleep. Oh well, one more down I guess.
Night all,
Melia -
Rebecca, yeah on your last treatment! You know, I was saying to the girls the other day, that even though the last one was not great, I knew it was the last. Mentally, it was so much easier. It made a huge difference to know that. I was surprised at how much easier it was knowing I would feel good and continue to feel good after a week or so. I think that was half the battle.
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Rebecca, Congrats on your last treatment! YAY!!!!
Mizsissy, getting your body through cancer treatment trumps forcing your body through exercise. Listen to your body, it's telling you to slow down. Finish your treatmetn and then slowly get back to where you want to be. Hang in there, you're almost done.
Mel, wow, that's rude of the nurse at your Onc's office, glad you held your ground. Good luck in keeping your dates for surgery, I know it really sucks to delay things. I hope you are feeling better and your swelling goes down.
Robertin, how would they know if you wore a wig for you passport photo?
Caya, that is so special that your friend is honoring you in the relay for life. WE are looking forward to seeing the picture.
I had a dream the other night that my toenails were turning black, then last night when I was in bed, I got this really bad pain in my big toenail...hope that doesn't mean anything.
Mary, we're thinking of you!
Ladies, thanks for all the compliments on the picture.
Hope everyone has a nice day. -
I went to my surgeon for a post post op appt. yesterday. Everything was fine, my mastectomy scar looks good, etc. I asked him what happened to my tumor after he removed it. He said it goes to pathology (duh, I knew that). I said then what? He said they take the slides and then dispose of the tumor. I was shocked. I said, what happens if some new scientific 'something' comes out in 10 years and it might benefit me somehow. They don't have my tumor to test. He said 'they wouldn't have resources to do anything like that'. I was so mad, he didn't even want to discuss this. I'm not even sure I believe him. Has anyone else brought this up with any Dr's? Just wondering...somehow I think I should have a say in this.
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OMG Lynn...I honestly never thought of that.
I think you make a good point as far as not having the tissue to test, but on a more practical note where would it be stored? I hardly think that anyone would want to keep it in their freezer at home (might lead to something going horribly wrong at a barbeque...eeeeeeewwwwwww).
OK, that was a bit over the line, and I apologize but the whole idea of wanting to keep my tumor rather tickled the dark side of my funny bone.
...back to grading papers and waiting for my appointment with the toxic kool aid.... -
I'm pretty sure my surgeon told me they keep the slides to use for future research. Not sure if they keep the entire tumor or if the slides alone would benefit me. Interesting question. I will ask my surgeon when I see her next month.
Although, when they re-ran my pathology at Dana Farber, they just used the slides. -
Rebecca, big congrats on last day! My last cycle has been the easiest so far. LOL on the idea of keeping the tumor in the freezer. Lynn, I had the same immediate thought as Rebecca. It's no grosser than the spawn sacks my husband sometimes keeps in there for fishing bait. Just make sure it's VERY well-labeled. Can you get it back from them? People used to keep tonsils.
Mel, I'm sorry to hear you lost the nail. Does anyone know if they grow back? The nurse I met who lost two toenails said it happened months after chemo ended.
Melia, just keep thinking of that next chemo tomorrow as another one down. Every successful infusion is a triumph and another dose of healing for us. And when you do get to the end and know you don't have to go back, it's very sweet.
I managed to walk a mile this morning first thing, on day 10 of my last two-week Taxol cycle. I'm finally starting to believe I'll really get my strength and energy back again, eventually.
Robertin, let us know what you find about the worrisome pink spot. Hope it isn't lymphedema. And Mizsissy, your line of little bruises too.
Hope you all can enjoy the day. - Skye -
Skye, I lost two toenails from taxol last June and they are almost completely grown back now. The tingly toes, however, are still with me. Last Taxol was August '06.
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Skye, I lost two toenails from taxol last June and they are almost completely grown back now. The tingly toes, however, are still with me. Last Taxol was August '06.
Thanks, GSG! Whew, that is a relief to know they come back! So it happened while you were still getting the Taxol? - Skye -
Rebecca - Congrats on the last tx. Mine is approaching also and think I understand what you mean about mixed emotions. Everyone keeps asking me if I am excited, happy, looking forward to it, etc. But those are hardly words that any of us would use to describe going to chemo even if it is the last one! I dont bother to explain that what I am really looking forward to is the time 3-4 weeks after that last treatment when Ill hopefully start feeling better. Or that Ill feel happy when I have eyelashes, eyebrows and hair again. Ugh all those well meaning people. Anyway it will be good to get that last treatment behind you. I hope you find some help with the kids, you shouldnt have to take that on too!
Mel Why not keep the onc appointment. If the internist thought it was worthwhile then I would go. Plus those oncs should be the specialists at treating all the rotten side effects they give us! That really stinks about your surgery dates. What kind of reconstruction are you planning?
Mizsissy hope all goes well at the cardiologist. You have really been put through the ringer!
Mary Thinking about you and hope you are getting lots of rest.
Robertin I had a pink swollen area in or above one of my veins last month. It was very tender and when I tried to straighten out my arm I could feel a pulling sensation. Anyway, it was infected. They tx with antibiotics. Putting a warm compress on it several times a day helped make it feel better. Now that vein and another one is just hardened and brown with scar tissue. If I wasnt bald I would look like a junkie. I hope they can get yours cleared up quickly.
For those that have finished chemo who has hair growing back? Id love to hear some updates on when it starts to grow back. I am suffering from serious hair envy! At this point Id be happy just to have eyebrows or eyelashes.
I mentioned the scarf v wig thing for graduation to my husband last night and he just laughed at me and said you hate the wig, just wear a scarf I guess I was trying to over analyze it. Seems like even simple decisions are difficult these days. -
never thought of what they do with the tumors. I have a copy of my pathology report and they also took out 1 ft f my colon . So i am sure disposal of all cancerous tissue is done with care . yuck do not want to think of where all that goes . enough of that kinda thinking
Rebecca ; congrats on your last
Jan : i am done last chemo and am doing ok , just because its the last does not mean we feel better right away . I am looking at more like 3 - 4 weeks after at getting back on track , even then the challenge of being tired will be there. My hair is slowly coming back , no eyelashes yet , no eyebrows , still look like a patient , still wearing my scarves and hats . I most likely will be wearing my wig to my daughters grad as i do use it from time to time . I just have to add eyebrows , line my eyes with eyeliner ( although the eyeliner comes off due to the fact my eyes tear alot . its funny i practice in the mirrror alot looking for the old me again its hard ..... so whatever makes YOU feel like YOU do it .
Mizsissy : take it easy like you say taking a good bubble bath always helps ...... take a break enjoy a good book in a nice chair uder a willow tree .
hugs everyone -
I'm doing great. The surgery was much easier than I thought. Not too much pain. It was a long wait the day of surgery but it's over. The lympathic screening wasn't bad. I didn't get sick after the anesthesia. I was starving, they didn't feed me until 6 pm that day. They brought me liquid stuff first and I said okay but bring me some real food! I stayed in a short stay room which was private with a great view of the roof. The nurses only had 7 of us to attend to so I got a lot of care. The only bad thing was the bathroom was down the hall so I had to drag my pole IV, drains, try to cover up etc, down the hall. I had to get up three times in the middle of the night to pee. But that is my only complaint. I'm on some Vicodin but the pain is not bad. I need to go do my arm exercises. The dr could find no find any tumor in the breast (guess the chemo took care of that - so ladies this is all worth it). There were a couple of lymph nodes that felt firm. Friday we should have the pathology report. I just hope I don't have to have more chemo. Rads will be enough. Sorry Mizsissy that you have felt the effects of the rads, hope your heart checks out ok. Thinking of all of you. Jan, you look great in your wig and you are one of the few that actually looks good in a scarf (I look scary). Thinking of the rest of you going through your chemos this week. I just heard from my BIL. They have brought in hospice to the house. He says no more needles, no more pokes. It was so nice of him to call and see how I was doing. One thing you guys didn't tell me about was those awful long socks they make you wear and the squeezing contraption on your legs to prevent blood clots. How can you sleep when your legs are being squeezed every 10 seconds?
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Mary, So glad you are home and ok. And very sorry about your bil. I forgot about those stockings! I guess they didn't bother me since I went home same afternoon so was still very drugged ... welcome home.
Melia -
Oh, Mary I completely forgot about the leg things! It's all coming back now... I'm also remember how much I liked the Vicodin. The bathroom down the hall sounds like too much work. I needed my husband to hold my arm just so I could get to the bathroom in my room! But, I guess I've already established that I'm pretty useless under the influence of pain killers.
Glad you are doing well - thanks for posting for us so quickly. -
Mary, so glad to hear from you. I also forgot all about those darn leg thingies! I stayed one night and got absolutely NO sleep because of them. Mine went off every 45 seconds or something ridiculous like that and I would jsut start to fall asleep and HERE WE GO AGAIN! Finally after the 3rd time I peed (around 4am) I begged the nurse to keep them off, which she did.
Rest Rest Rest! -
YAY, Mary's back! So glad to hear you did well, and are home where you belong now. Great to hear no tumor left in there, too. That really is a good thing to remember - this chemo stuff does work. Hoping your path report turns out perfect.
Shorti, your avatar....LOL Not as pretty as you, but very cute!
Caya, can't wait to see the picture of you your friend took.
Lynn, this is quite a coincidence, but this morning at the oncologist's office I was reading a magazine article about a lady who actually took her tumor, preserved in paraffin, home from the hospital and is saving it in her closet in case something comes up in the future. I didn't get the specifics - was just skimming and then I got interrupted. But at least it seems it is possible. I'll try to find the article again.
Jan, in answer to your questions, I'm having a diep reconstruction, and I'm actually kind of excited about it. The new me may be better than the old one, from what I've seen of her work. As far as hair, of course I'm not far out of chemo, but I have NO eyelashes, about three eyebrows, and a pretty good rate of hair growth on my head, but the hairs are all about a quarter of an inch apart, so what good is that going to do me? I'm thinking I'll shave my head again tonight - don't see much sense letting it get long if it's so sparse. What do you think?
Yesterday an older lady stopped me in the grocery store to ask me who cut my perfect hair (this still happens every day) and when I told her it was a wig, she apologized all over the place - she was just horrified that she had asked, until she realized I wasn't uptight about it. I told her it happened every day, and that it was the exact same haircut I had before, only behaved better. So she went off happily with the name of the guy who gave me that haircut when I had hair!
Mizsissy, please give us a report when you get home.
Hugs,
Mel -
Oh, almost forgot. I did keep my appointment with the oncologist this morning. As soon as the nurse called me back I started crying (this was my favorite nurse, not the mean one). Guess I really did get my feelings hurt, or something - I couldn't seem to stop! When the doc came in he saw the tears and said "haven't you got those tubes in your eyes yet?" because he's so used to seeing me cry from the blocked tear ducts. Anyway, he did say that they tended to think of that kind of side effects as more of an internal medicine issue, but that he was glad I had come back because he needed to see this. However, my internist had ordered every single thing that he would have done, so he was satisfied with that. He decided to add one diuretic for a few days and see if that helped at all, but thought it would just take some time. So, I'm back to wearing ted hose, keeping my feet elevated, and hoping for the fluid to go away, which he says it will eventually, because although the taxanes can cause swelling, they don't damage blood vessels or change anything permanently.
One thing he said that might be of interest to some of you is that he chose weekly taxol because according to the research, it gives us the same benefits as a round of taxotere would, without the side effects of taxotere (i.e., more chance of neuropathy and swelling). That's how it goes by the studies, anyway, just not for me. All along, he has said that I was acting like I was on Taxotere and not Taxol, as far as symptoms and SE's go. Now he's thinking that giving Taxol weekly almost makes it behave like a different drug. Anyway, at least he knows, now.
He was very nice to me, and even gave me a hug when I left, and was concerned about my feeling "unwelcome," or whatever. So I guess I'll just get over it. Somebody had a bad day.
Now I've got to go figure out how to put on ted hose with a sore toe.
Mel -
Mary, so glad you posted so quickly... I also recuperated very well to the mastectomy - I didn't have those socks that some of you had. Hopefully your pathology will be good. Continue to take it easy and rest up.
shorti - the new avatar is cute.
Mel - hope your swelling goes away pronto - take this as an opportunity to keep your feet up and do as little as possible.
caya -
Well, I don't know whether I want my tumor hanging around in my closet..that's kind of weird, but thought it should be frozen somewhere or something. I don't know, I was just not happy with my surgeon's response. I'm moving onto another surgeon in Boston anyway when I get my prophalatic and DIEP.
Mel, what are ted hose? -
Mary called them "those awful long socks they make you wear." Same thing. Awful long TIGHT socks to prevent blood clots, fluid accumulation in legs, etc.
You know, I actually considered ASKING for some of those sequential compression things that squeeze your legs, too - just wondering if that would help. Finally decided I didn't want to mess with them.
Mel -
Yay Mary I am so glad you are feeling good. I had the leg things, and actually I rather liked it...felt like a massage
Home from last chemo...Jan you totally put your finger on it describing the mixed emotions. Nice to know that there are people out there who understand...if one more person expects me to jump for joy that this is the last one I am going to be ill. oh wait....I AM ill. YECK. off to the couch for me. -
Well, just lost a long post about the very fascinating subject of my cardiology visit today. I could repeat it all but I'll think I'll spare you the details and just tell you that they haven't found anything to worry about. I will wear an event monitor for the remaining weeks of radiation treatment, but the skipped and extra beats were probably nothing more than fatigue and stress.
Mary, we are very glad to have you back. Wasn't it just a piece of cake!!! I knew you'd do well, as healthy & fit as you are!!
Mel, I also had a good nurse and bad nurse during chemo treatment, and my horror stories (there were several) are documented in our archives a few pages back. I think you need to get that fluid problem under control and your body back in balance before surgery.
Just heard the garage door open, which means DH is home. I'm ready for cocktail hour tonight!!!
Clink!!
Mizsissy -
I am going in for my Cat Scan tomorrow for my radiation. They have to inject me with some kind of Iodine based die. Great. Just when you think it's all over, more poison goes in ya.
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never thought of what they do with the tumors.
After my lumpectomy I wanted to know where my tumor was. I wanted to see it. My Dr. said it was probably in a jar somewhere getting ready for the TUMOR BOARD. -
Post deleted by TPPJ
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i used to have my tonsils in a jar and i took them to school for show and tell every year until about 6th grade.
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