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Comments
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Why I do declare <---said in my best southern accent (for a yankee), I believe that Marsha and I are getting quite the reputation!
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Twink -
I haven't had any problems with nausea after 2 AC tx's -hmmmmmmmmm think I qualify for both anti-nausea categories! So, I guess it was a good thing I was pulling up to the real bar way before the chemo bar! HA!
Jen
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Hi All
Enjoyed all the postings. Hope all the nausea has eased mine has thank goodness. Friday was real rough, couldn't even keep down the anti-nausea medication. Just hope it doesn't get worse with each tx. Headache went after I took migraine tablets.
Would love a decent glass of red but it tastes like vinegar at present.
Had a real meltdown on Sunday. On Saturday I finall went to get fitted for my prothesis. (I was unable to have reconstruction at the time of surgery.)that was fine. sunday morning put on new bra and sliiped in the prothesis. Some how I had been given the incorrect size bra and ended up looking like a lopsided freak as one breast slipped towards my waist, it made me look as if I had a monboob as well. That was it. I lost it. DH tried to console me but it didn't help. Eventually got it sorted out. Another bra was fine and everything fitted. Made myself feel a lot better by going shoe shopping with elder daughter, it is wonderful what some new shoes can do for ones confidence.
Hope all visits to the bar go well this week.
Alyson0 -
Hi Everyone,
I haven't said much, but have been reading everyones progress.
Count me in for bar order #3AC on Thursday.
Catherine - I spent most of the evening on your website.
I absolutely love reading about your dogs and the places you have been.
It seems like with each treatment - brings on more nausea.
Alyson, Maisy, Pat, Karen, Twink.. - I hope this has all passed now.
Hillary - If Senokot, Dulcolax do not work for you.
My onc suggested a Herbal Tea "Smooth Move"
You can pick up at a Natural Health Food Store.
It tastes great, caffeine free..and lets just say...the name says it all.
Hugs
Melody0 -
Has anyone heard from GI Jel?? If I'm not mistaken, her surgery is this week, is that right? Woke up in the middle of the night thinking about her. Jel, if you are popping in here, let us know OK? Marsha
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Mon -
Tue - SammieKay, Melanie, Jen, Linnie
Wed - Tropicmom, Karen
Thu - Carynn, Piper, Melody
Fri -0 -
Marsha -
I am pretty sure that Jel's surgery is Tuesday (tomorrow). I remember, cuz that is when I have my next tx.
Jen0 -
Linnie, I've seen your posts on the Taxol thread and I like you are starting to look at the next round. Are you doing DD taxol or the once a week X12? I have the option of doing 12 weekly or 4 every 3rd week and just can't seem to get the info on which is better. My onc nurse said for me to do the 12 weekly but the only reason she gave was because I am so small. I thought it was based on body weight/mass anyway so what difference would that make? Who wants to go WEEKLY?????? Who else is gettingready to move to Taxol? Would love to hear what everyone thinks on this subject. Marsha
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Marsha -- GIJel's surgery was the 20th. My onc didn't give me any choice -- dose-dense taxol (every two weeks). I didn't seek any other opinions as I really like and trust this guy, and he's known to be the best in the area. I'm triple negative, with no node involvement. What about you?
-- Hillary0 -
Hi everyone,
Just checking in. I think it's time to buzz my hair tonight as it is falling out in handfuls. It is day 20 since my first AC. I had a lot of energy this weekend and felt good.
Catherine - loved your website!!!! Absolutely wonderful!!
Wendy0 -
Marsha, afer the last AC next week, I move to DD (every 2weeks) Abraxane (Taxol conditionned in albumin, infuses in 30 minutes, but takes 30 minutes to prepare, said the nurse, a powder to be mixed carefully) + (as usual) the Avastin. Both drugs are part of the clinical study I am in. Although Abraxane is easier to deliver (faster and no solvents requiring pre-meds), it has the same SE,mostly neuropathy aspects, which I hope won't be too bad, and it is not that hot for hair either... well, we'll see... the good news these 4 tx will go as fast as the 4 AC... then, I think they'll put me on tamoxifen for a year or 2 (because I was not menopaused yet, then to Arimidex or the like, since I am ER/PR positive). And, as I already mentioned, I have to go for Avastin tx every 3 weeks (30 minute infusion)until December (clinical study to have Avastin and Abraxane approved by FDA for early stage BC; I am IDC 1.7cm, stage IIa, 2nodes+, clear margins, grade 3, bilat mast jan 10th, no reconstruction)...
Talk about a variety of scenarios we all have...
Have a nice gentle day...
CatherineH0 -
Melody, Wendy, glag you too visited fluxmuffin (this is the name we had given to this old dog we had found in the middle of the road on a busy week-end, abandoned by his owner-hunter, because too old and sick for hunting. We took him to the vet where he stayed for 2-3 days to stop the infection in this ears -- he was totally deaf -- bones and skin -- but beautiful and sweet, and then we tried everything we could to nurse him back to life, but his kidneys and liver were beyond repair, and after a month of TLC we had to let him go, the urea was so high he had seizures and was in pain. At least he did not end in a ditch, hit by a car. He was probably 10-12 years old, we did know. We eventually found out that the owner was known, but I did not want the details because I would have gone to his place to throw rocks at his windows and give him hell for being such a turd). This dog made such an impression on us, he is the reason we got Toby, a similar breed, but smaller.
Have all a beautiful day,
Catherine0 -
Hi Ladies,
Glad to see you are still riding the waves well.
Sorry I have not been on, but have been going through a storm over the past week. I hope you can learn from this and question everything...... It is a lengthy mail, but I want to make sure you have the facts in case you ever need it.
As you know they wanted to operate on me a week ago and I suggested we wait for a week as I was not physically or mentally ready for it. So they ran the CA125 blood work, which is a tumour marker and it tells if there is anything going on with your ovaries. It came back pretty normal. They also said that we should do another pelvic ultrasound last Thursday, to see how things looked. Well to everyones surprise and my delight, the left ovary is back to normal and the right one is now only 4cm with two simple cysts. So I asked the OBGYN if she has ever seen anything like this before, she says NEVER. They clearly thought I had something really bad going on. Well I told her that I believe it was treatment related, because I developed pain in my right side and bloating in my stomach after my reaction to the 2nd TC treatment. I researched online to see if I could link the chemo, steriods etc to known affects on the ovaries and found nothing.
She says she has learned alot and will now request pelvic unltrasounds prior to Chemo/after chemo and prior to Tamoxifen and annually to watch for changes.
She intends to research this and if nothing is out there, will write a paper with the ONC to ensure this is documented.
I did inform her that I see information here all the time where women have ruptured cysts while taking Tamoxifen and their doctors tell them it is not related.
So the upshot is, that I was still scheduled for surgery tomorrow, as we thought it might be a good thing to take them out anyway to get rid of the estrogen and go on AI as Tamoxifen is known to cause Fibroids and cysts. I passed it by the ONC and she says that I am moving too fast now that eveything seems to be benign, I should wait for awhile. I mentioned to her my concern about the recent Mayo clinic study that found that OOPH removal for women younger than 45 with no HRT increases mortality within 10 years and this concerned me. She agreed.
So I had the OBGYN speak with the ONC and we are going to wait for a couple of week so I can go through one more menstrul cycle and do another pelvic ultrasound to see what has changed again. Then we will decide on what to do about surgery.
So the decision is basically in my hands now.
Do I just remove the right ovary which has the biggest problem and leave the left one so I still have estrogen and go on Tamoxifen (which could cause uterine cancer, blood clotting, fibroids and ovarian cysts) or
Do I remove both and take the AI which has less side effects, but based on the Mayo clinc study I could die sooner getting heart disease, Dementia, Parkinsons disease and osteoporis from the complete lack of estrogen.
(Ignore all bad speling). Oh, the joys of decision making when we are adults.......
I am hopeful the decision will be clear for me after the next scan.
Sorry to be lengthy, but thought you should know that this stuff can happen. Want you to be prepared, not scared out of your wits like I have been.
All the best.... Will keep you posted.
Jel.0 -
Good morning
Feeling better this morning though still a bit of nausea. the metamuscil and dulcolax have worked - hopefully not too well!
Must do some work this morning. Have managed to float around lately not getting a lot completed.
Catherine, interested in your trialling of drugs. I will also be on a trial for some drugs to replace tamoxifen once I have finished chemo and radiation tx. I am IDC 2.8cm, stage IIb node+ er/pr+, grade 2 leftside modified radical mastectomy - no reconstruction. The gov. here is very reluctant to introduce new drugs - very expensive for a small country especially as almost all health care is in the public sector so these trials are a way of extending treatment that would be unavailable for most people. I am also lucky to be getting taxol through the public system, we would have had to pay for it privately because it is not covered by medical insurance as yet.
Just 3 months ago I never gave any of this a thought.
Have a good day
Alyson0 -
Hi Marsha,
Like Catherine, I'm doing DD Taxol x 4. The woman who was in my chemo room last visit was doing Taxol weekly because of her tolerance level but it was probably due to age. I would think that if your other option is once every three weeks, that would give your body enough time to recover. Maybe you should ask your onc again next time your in. I don't blame you for not wanting to go every week.
I have been checking some of the other sites to see what's ahead for us. Bone/joint pain seems to be the worst side effect (days 3-5 following treatment). Not much nausea so that's good. My onc highly recommends the sympt-x glutamine powder which is really hard to find. There are alot of other glutamine products on the market but I did some research the other night and found an article in a cancer journal which mentions this specific one for people undergoing Taxol chemotherapy so that sold me.
Good luck to all those having tx this week. Mine begins at 10 am tomorrow.
Linnie0 -
Linnie, thanks for the info... wishing you the best for tomorrow... Big hugs,
CatherineH0 -
Alyson, you'll see my note tomorrow morning... Wishing you the best with your treatment... You sure are far away (or the other way around, for that matter...). All I know about New-Zealand is from my husband who travelled there for work years ago and did some gliding (the passion of his life when he was younger + sailing, so N-Z was his cup of tea...), and from the movie Lord of the Ring... (feeling like the Golem myself, right now, without hair...).
Take care,
Hugs,
Catherine0 -
Jel, we were getting concerned about you. Overall it's pretty good news, but how agonizing this decision making process is... Thank you for documenting all this so clearly, this is very useful info. I wish you the very best and send you big hugs,
Take care,
CatherineH0 -
Jel,
I'm from the Jan 07 group and saw your post about ovary removal and wanted to reply. I went to Dana Farber in January for a 2nd opinion and the onc there wanted me to particpate in a clinical trial that would shut down my ovaries with Lupron at the same time as starting chemo. I could either stay on the lupron after chemo or have my ovaries removed...the trial is to have ovaries shut down for 5 years. I would also have taken either tamoxofin or some other drug for the 5 years. My local onc said he would do that but only if I was in the trial. The long term effects of ovary removal at my 'young' age (he was being nice, I'm 45) could be devestating. So it was my decision on going with the clinical trial or do the traditional chemo then tamoxofin for around 2 years until I'm post menopausal and switch to AI. I just couldn't shut down my ovaries at the same time as chemo and didn't want to have NO estrogen if I didn't have to. The chances of uterine cancer from tamoxofin is quite low so I chose to go the traditional route. That being said, I know there are a lot of women and Oncs who chose the ovary removal route as well. There is so much decision making in this strange trip we are on...I wish the best of luck to you and hope your ovaries go back to normal.
Lynn0 -
How interesting to sign in tonite and see everyone talking about Taxol. I spent a lot of time online last night reading about being triple neg which led me to looking at Taxol vs Taxatore. I'm going to talk to the Onc on Thurs and ask to take the latter instead. From what I can see they are the same drug with the same end results, but the Taxatore is supposed to have fewer side effects during the actual administration of the drug. I'm curious, has anyone else talked to their Onc about one vs. the other?
Good luck to SammieKay, Melanie, Jen, & Linnie tomorrow. Wish you smooth sailing at the bar.
Carynn0 -
Following my last AC on the 29th, I'm up for 4 DD Taxol (2 weeks apart). I briefly discussed Taxol with the onc but didn't get into much of the details.. he just said Taxotere and Taxol are both taxanes...hmmm. I have to do more research myself. I'm triple neg. too and don't have the hormone targeted options available. I'm not very big myself (size 6ish) but I guess I qualify as 'medium' sized. I wasn't given the 12 weekly dose option...I'm not sure why. I assume it's the triple neg status and the strategy of hitting me with the 'big guns'.
Feeling generally crappy but I refuse to complain too loud as I suspect I'm doing better than some. My biggest complaint today is that I still have to shave my fricking legs while I've lost the hair on my head (and elsewhere). *Sigh*0 -
In researching the glutamine supplement mentioned in one of the Taxol posts above (sorry, can't recall whose post). Seems like L-glutamine (can't find much on sympt-x-glutamine)is something all of us Taxol / taxane destined women should consider. Here are a few interesting links:
http://www.steroidsinternational.com/glutamine_glutamine.htm and http://www.acscsn.org/Forum/Discussion/thread/view?msgid=11260&msgrid=2 and http://www.cancernetwork.com/journals/oncnews/n0107supp3k.htm0 -
I am on dose 3 of AC so I haven't looked at taxol too much yet, except hoping beyond hope it does not make me nauseated. I don't understand the L gluatamine. Can someone explain?
The talk on the ovaries is interesting. had my uterus out last year due to huge fibroid. My onc has not said anything yet about it. Maybe it is time to start asking. My tumor is ER/PR ++
Jel. hope the ovaries continue to improve.
Carynn, You may want to read about hand and foot syndrome with Taxotere.
Wow so much to keep thinking about-ovaries, taxol. L gltutamine. Funny all ever think about these days is not throwing up!!!
Wed is happy hour!!
karen0 -
Linnie, What are glutamine products used for? I will be with you and Maxine at the bar for #6 Taxol. So far no neuropathy. Not sure when that is supposed to rear it's ugly head. Would appreciate info on glutamine. Good luck and God bless tomorrow. Sammie Kay
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Just a note to all: I am tired otherwise doing o.k. I will be thinking of all of you, especially my bar buddies tomorrow: Linnie, Melanie, Jen and anyone else "bellying up" tomorrow.
I don't have much good information regarding ovaries, as I had hyterectomy 10 years ago. I was 57. My mom died with ovarian cancer. Her story was sad, she had hyter at age 66 and they left her ovaries. It was a vaginal hysterectomy and I guess they didn't have the technology to remove the ovaries with a scope at that time. The sad thing was she was already post-menopausal and didn't need those damn ovaries. At age 70 she developed advanced ovarian cancer. She lived 7 years, some of those years were good quality. So I don't care for ovaries very much. My daughter had hyterectomy with removal of ovaries because of the family hx. of ovarian cancer at age 45. She is doing fine. Of course the long term effects remain to be seen. She is 48 now and does not take HRT.
Good luck to all who have the delimna of what to do about ovaries. Especially puzzling if you are er/pr-.
A lady from my church called today very upset because her daughter, who is 42 is just dx'd with breast ca. The woman herself is a breast ca survivor of 3 years. She is so upset because her daughter has 2 small children. LIke many of you girls. I talkedto her for awhile and encouraged her. I can see at times like these that having breast cancer can make me a blessing to another fellow human being.
Hugs and good thoughts to all my fellow cruisers. Sammie Kay0 -
Hi everyone, I haven't been online in a while and just read several days of your posts, so many and so amazingly expressive and colorful, even when it comes to diarrhea... I love that we can discuss this stuff with each other. I love that we can say it out loud (well, the equivalent of) --
I came down pretty hard after completing my 3-Day Decadron Marathon, a fast clip at that, I set a new record. I totally crashed and the side effects were worse and somewhat different than after Chemo #1. It built up over a couple of days until I was so fatigued I could hardly move, I had no energy, I lay in bed unable to read or even watch TV. When I went to the bathroom, my arms and legs felt heavy, I became dizzy and short of breath. This was on top of drippy bloody mucous nose, headaches, occasional bone pain mostly in my coccyx (tailbone)but not requiring Vicodin this time, but much greater nausea so I took Compazine for the first time, and alternating constipation and diarrhea (without taking any laxative, only 3-6 prunes a day). Then I started with a dry hacking cough. I am so grateful that I read on here that others got the drippy nose and cough from the chemo because I thought I had caught something from my 2 1/2 year-old granddaughter.
By Sunday I was telling my DH that I was thinking of D/C'ing my chemo tx. Of course he talked me out of it. Now today, I feel so much better by comparison. I am glad to be back from zombieville. And glad to be able to once again hear about how all of you are faring. xo Sybil0 -
Ok, I have decided that the zofran I was given to replace the compazine that wasn't working for nausea, is what is giving me these awful headaches. Heck, it says so on the side label "may cause headaches". So I'm not taking it anymore and granted today is day 4 of #3 AC, maybe finally tomorrow I won't be so blah and can get something done. Thank goodness I'm not working right now or they'd have fired me! Anyway, Zofran is out now.
Pat0 -
As some of you remember I quit chemo after one dosage. I thought I'd share this info as I was having nausea in the mornings the day after starting radiation treatments. I'm having treatment number 4 today. Thought I'd give y'all a heads up if you are having rads next.
I saw my rad doc yesterday after treatment number 3. She says my morning nausea is an after effect of the chemo, possible ulcers! Told me to try OTC Zantec for it and if that didn't work then she'd write a 'script for something. Zantec already seems to be working. So if y'all are doing rads next and start having nausea the very next day you need to speak up about it as its not from the radiation on the breasts/chest.0 -
Good afternoon! Where is everyone?
GIJel and Jan -- Thanks for updating us with your stories!
Jen -- I'll be sure to put you on the list of those of my chemo sisters to avoid when drinking and gambling!
Pat -- I had problems with compazine. Great for immediate nausea relief but made me dizzy -- I felt like I had a hangover the next day.
Sybil -- I wish that I was out of zombieville -- still have my chemocold! I think that ds and dh and I are passing it around. I guess we need to be a bit cleaner around here!
Sammiekay -- a lot of women doing taxol get neuropathy in fingers and toes. Some find that L-glutamine helps. I've mostly seen neuropathy with dose-dense taxol, so maybe the weekly dose is low enough. It's also unclear to me whether the neuropathy is from the taxol or from the solvents that they need to dissolve it. Can anyone enlighten us?
Caryn and Twink -- We're on the same protocol. Let me know what your oncologists think. I know that mine wants me to do paclitaxel (taxol).
Catherine -- Does your onc call it abraxane or taxol? What does the albumin conditioning do? Is is supposed to have fewer side effects?
Alyson -- It's fun to think of you half-way around the day from us!
-- Hillary0 -
Thank you Catherine, Lynn and all the ladies for your thoughts. It appears the Mayo clinic study says they don't fully know how the ovaries and the hormones they produce affect the brain and other parts of the body. So the side effects of removng them all together is still unknown.
Here is the link to the article:
http://www.mayoclinic.org/news2006-rst/3642.html
Keep on sailing......
Jel0
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