Regimens, side effects, and support from others going through chemo.
Posted on: Dec 6, 2006 04:45AM
melissaga wrote:I just typed out a long post only to have it disappear in cyberspace. So, here I go again!
Posts 121 - 150 (949 total)
May 5, 2008 07:39PM , edited May 23, 2008 11:25PM by rock
Pre-Chemo Shopping List.
Rather than spending the evening documenting my hair loss(!!), I deleted my original post, updated and reorganized the tips, and posted below on May 23rd, 2008.
May 7, 2008 04:50PM Emma56 wrote:
Hello to all,
this thread is such a "treasure chest" of helpful tips and I would like to share two other ideas that I don't remember reading here before and which I have found useful:
* dry eyes: I use homeopathic eye-drops, either the "computer eyes" formula or the one for "dry eyes"; the brand is "Similasan"; those drops feel very soothing
* yeast infection in the you-know-where area: I insert an acidophilus capsule three times a week;
moisten the capsule a bit under warm running water; has worked for me so far
Best wishes to all before/in/after chemo.
May 8, 2008 08:02PM rock wrote:
bump. I just updated the list and the tips.
High points: Mem SLoan Kettering dietian I spoke to yesterday insisted that ER+ women should read protein bars' list of ingredients carefully and avoid them if they have soy, and that women with breast cancer should avoid Vitamin C. Forever.
But reasonable minds might differ. I'm just throwin' it out there.
May 8, 2008 10:35PM , edited May 8, 2008 11:01PM by eternitywa
Thank you all for this ... my mother just started chemotherapy and is having 6 doses of it , then starts radiotherapy, then goes on to herceptin for HER2 Positive therapy - hormone therapy drug.
The first day yesterday and it became a nightmare at night dealing with her crying and wanting to kick herself from the nausea and pain. She didnt sleep well at all, cryed herself to sleep and the difficulity in not being able to eat is a worry to us all. Thanks melissa and everyone else for sharing tips here they are so helpful for us in helping us help our loved ones. we are in australia. and its autumn right now, mums getting chills and is frozen even though her body feels warm on the outside. do hot water bottles help? also what foods did you find were hard to eat or uncomfortable to eat?
May 9, 2008 09:23AM rock wrote:I was FREEZING before my PET scan (prob a combo of low blood pressure and low-normal blood sugar). They draped me in hot towels and sheets straight from the drier. It was wonderful. (And now, I always travel with a hat.)
May 9, 2008 10:12AM , edited May 9, 2008 10:13AM by NancyD
Eternity, make sure your mother takes any oral anti-nausea meds (like Compozine) BEFORE she gets nauseous, and to keep taking them at the prescribed intervals. Are they giving her one as an IV drip before the chemo drugs? There are several (Aloxi, Kytril, Zofran) that are given that way.
If it's covered by your insurance, Emend is an oral pill given at the start of chemo and taken for two days after chemo, but it's very expensive. It works on the center of the brain that controls nausea.
I found a nice cup of something hot (tea, spiced apple juice, broth) helped with the chills. And having a blanket warmed in the clothes dryer would be a nice touch, too.
I never found any foods were uncomfortable to eat, just that the taste changed so I didn't find them as palatable. But be careful that your mother doesn't develop mouth sores, as then comfort would be a factor. Make sure she keeps her mouth from becoming overly dry as that allows opportunistic diseases (like thrush) to develop. If she rinses her mouth out with a non-alcohol mouthwash, she will be keeping them at bay. We have a brand in the US called Biotene which I used, but many big brands make non-alcohol washes now.
Ask your mother's oncologist about what is being given to counteract the nausea, and ask specifically about some of these drugs.
But be careful your mother doesn't overmedicate with them. They do cause constipation...and that's no fun, either.
May 9, 2008 04:24PM eternitywa wrote:
hi nancy, Yes mum has been given Emend for the naseau however it didnt seem to help yesterday with her first dose of chemo. Today however she was much better with it. She was also prescribed and given an anti axiety tablet - ativan helps her to sleep as well and also ansemet also for nausea. poor thing nothing for her strong headache so i gave her panadiene forte for that. her mouth is starting to burn already she had ice to calm it a little and was told to mix a little baking soda to some water and use that as a mouthwash, but i will be out looking for a suitable mouthwash and gum that will help. not sure what we have here as yet. thanks for the advice i will look for that.
May 9, 2008 10:09PM , edited May 9, 2008 10:12PM by rock
bump, small update to above list w/ more food suggestions. Some of us find small portions of food throughout day helpful for dealing with nausea.
Eternitywa: "Amen" to everything NancyD says! And I am keeping you and your mum in my thoughts. It sounds like a cliche, but really: Take good care of yourself! (Tho I am not an esp maternal person, I nonetheless wish I could make you -- and caregivers everywhere -- a cuppa tea and fix you up comfy in a chair or pour you a bath or something.)
May 10, 2008 01:37AM jezza wrote:
Another Aussie here. I have sent you a private message. Go to MY HOME at the top of the page to retrieve it.
You sound like a great daughter!
May 10, 2008 04:08AM Diana63 wrote:
This is a small one but every little bit helps. I keep saltine crackers at my desk, for when I am feeling very queasy at work. It helps to put something in your stomach sometimes, even if it is just a few salty crackers. A small bag of potato chips is good to, anything light and salty will help in a pinch.
May 12, 2008 09:27AM tiff2008 wrote:
Ladies--I'm really having the mouth sores now, I'm rinsing with both salt and baking soda w/water every 3-4 hrs. I brush with Biotene toothpast and my onco. gave me "Magic Mouthwash". But, the last 5 days have just been getting worse, I have another chemo tx on Thurs and I don't think I want to have any mouth sores at that time :(....any other recommendations of how to get rid of these painful things!!!
May 12, 2008 09:40AM wetcoast wrote:
Your mouth sounds like mine although they were not full blown sores. The inside of my mouth and throat feels as though it has been burn't with scalding coffee on the way down. They first thought maybe it was yeast and prescribed something called CCI mouthwash Akabutu's compound. You swish and swallow about 15 to 30 ml. The next one is Tantum or Apo Benzydanine. This you swish but DO NOT swallow. It has a numbing effect on everything and makes it bearable. I had done the baking soda, salt and biotine as well and none of them really helped. Both items above are perscription. Wish you well
May 12, 2008 10:04AM paige-allyson wrote:
Anti nausea meds are the best. I was very lucky in that my particular onc at Dana Farber was known among the staff for being great about prescribing these meds up front, BEFORE any nausea hit. Every chemo I had an anti-nausea drug in the IV drip, Aloxi I think, the Emend in pill form for a couple of days, and the decadron. He also said use the Senekot every night for 3 nights following chemo to prevent constipation. I went through 16 weeks of dose dense AC/T with no nausea, no metallic taste in my mouth or loss of appetite. No constipation either. I also walked, on average, about 3 miles a day, whether I felt like it or not. I gained no weight. The worst side effects for me were the fatigue and the hair loss. I've heard cold foods like popsicles as soon as you feel a mouth sore starting can sometimes stop them in their tracks, sorbet too. Lemons drops are good for nausea but they give me mouth sores (even not going through chemo). My big comfort/anti nausea foods have always been graham crackers and gingerale. Those were about all I could eat for the 24 hours after my surgery.
May 12, 2008 11:57AM eternitywa wrote:
Hi everyone, Just want to say thankyou to all for your kind words and thoughts.
Jezza - Thank you so much, I received your message and I have registered. I have been searching for a Australian forum for the past week. I look forward to using the forum just have to wait for them to activate my account. Cheers
Thank you kindly for your compliment, but I am only doing what any daughter I hope would do for her mother....
Diana63 - Thanks for the tips, I wish mum would eat crackers, although she is willing to give things a go to some degree....
Anything, even though minimal helps a greatdeal for someone experiencing this for the first time. so thankyou
RockTheBald - Cool Name, Thankyou for your kind hearted words, Lovely to have thoughtful people like you in this world. I wish i could reach out and hug everyone here...
Life throws so many curveballs, and this has got to be a real sucker...
I appreciate all the advice from all of you and I am continuesly reading what you have to say when I can. Cheers Elisabeth
May 12, 2008 08:59PM , edited May 12, 2008 09:06PM by hsh012508
All great tips so thank you!
I have 2 more tips/tricks I learned that help me tremendously that I'd like to add.
Claritin: For some, but not all, taking Claritin (or a generic version of it) relieves the bone pain that can be a side effect of the Neulasta injection. This "side effect" of Claritin was discovered by my chemo nurse and works for me but she said that it is not something that works for everyone, some still have bone pain. I figured it couldn't hurt so I tried it - I bought a generic. During the first round of chemo I did not yet know about using the Claritin and had horrible bone pain. During the 2nd and 3rd round of chemo I was using the Claritin and had no bone pain whatsoever.
Tea tree oil: I was also told by my chemo nurse to put tea tree oil on all my nails twice per day before starting chemo and continue all the way through treatment. I first tried 100% tea tree oil and the smell was extremely offensive, especially in the 7 days right after chemo when any strong smell can be offensive. I then tried one with some lavender oil mixed in and the smell of that is much more pleasant. I am 50% of the way through chemo treatments and have had no nail issues so far. In fact, my nails look better than they ever have so I may continue using tea tree after chemo is over.
If anyone has any suggestions for not getting mouth sores (besides sucking on ice chips/ice pops during chemo and using Biotene mouthwash every 2 hours of every day!) or getting rid of them quickly once you have them, would love to hear from you.
May 13, 2008 08:09PM Viktoria wrote:
I heard sucking on ice or eating a popsicle while they push the adriamycin will prevent or cut down on mouth sores and so far 2nd treatment of T-A-C no sores. I bring my own Popsicles because the office ones or not as good.
I was told all my hair would be out in 14 days and none starting to fall out until day 19. It came out mainly when I brushed my hair or slept, after three days of changing my sheets because they were full of hair I tried wearing a hat and it was comfortable and in the morning no hair all in the bed I just had to shake it out over the toilet. (my husband is a plumber and said hair cannot clog a toilet but it does clog sinks and tub/shower drains). My hair is short but still cute I've decided to keep it as long as I can.
Be careful driving after chemo for a few days, I felt pretty good the second day and decided to pick up a few things, bad idea, I ran a red light (cars turning left and right and I missed them both I think I had angels guided me), lost my keys (they were in the car that was still running), forgot to go at a stop sign (the peeping alerted me something was wrong), and got off at the wrong exit. LOL
I've been riding a motorcycle my whole life and now my reflexes and response time are much lower making it very dangerous, I was able to ride a 4-wheeler in the mountains but even wrecked it twice and fell off into a 4 foot mud pit, and got stuck frequently. So be careful doing "dangerous activities" even if your experience at it.
The worst part of Chemo for me is waking up from a wonderful nap and discovering the damage a 3 y/o boy can get into unsupervised, I've found out having someone who can come over just for a few hours so I can nap is a godsend. Lots of people say if there is anything I can do just let me know and if you call and ask for help they will. I felt funny asking for help but this way I can visit some and nap and not have my home destroyed.
I also keep a list of activities 100 that take less the 15minutes and when I'm really tired I just chose 1 every hour or so and I also have a list of positive thoughts for when I'm feeling sad and beaten up. good luck chemo is doable.
May 15, 2008 10:03AM , edited May 16, 2008 12:23PM by rock
Bump. I updated the shopping list I posted earlier.
in nyc, cheap ($40-80) yet decent wigs can be had on north side of w 14th street (inc near the corner of 14th & 6th ave). i wonder if wigs are cheaper in stores in neighborhoods that cater to funky hipsters than in places that serve an older, more mainstream crowd.
you can also buy a soft wig cap for $2 that protects the scalp. (I'm considering wearing it on its own.)
Some non-wig options:
www.sparklingearth.com/products.asp?category=100044 (they have a special "ladies" section)
May 16, 2008 06:11PM otter wrote:
Wondering7, you "bump" a conversation just by posting something to it. That brings it to the top of the list, which is in chronological order according to the newest post. You don't even have to say anything--you can just sign your name, or type "bump", and everyone will know you are rejuvenating that thread.
May 18, 2008 11:14AM Joia wrote:
Thank you for starting and adding to this thread. And thank you, rockthebald, for compiling all the comments in one post.
It will be invaluable next month when I start chemo. I had a lumpectomy on 4/23 and am scheduled for a second re-excision on 5/23. I met with one oncologist who recommended TCH. I am moving back to Boston (where I just moved from 7 months ago and have a support network) for six months for the chemo/rad portion and will be getting a new oncologist. Is anyone else on this thread doing TCH? Are there specific SE one doesn't get with AC?
I have always had long thick hair and have been trying to prepare myself for being bald. Reading everyone's tips and thoughts has been very helpful.
In researching headcoverings on the internet, I came across the following: (I will be living in Cambridge, Mass., which is fairly bohemian, so I am planning to do some "ethnic" looks).
The first two websites are for headcoverings for Orthodox Jewish women who cover their hair in public
This has more extensive scarf tying instructions (click on link in nav bar or at the bottom of the home page). I just ordered some large square sheer scarves from this site.
how to tie African head wraps
Rockthebald, I am hoping to go to NYC in the near future for a fun shopping trip before I start chemo. I will check out your wig shop recommendations.
May 18, 2008 11:45AM , edited May 18, 2008 12:30PM by rock
Thanks for the tips on tying scarves! (I'm also hoping for a bohemian or offbeat or sometimes edgy way of doing bald.)
But! Having said that! Direx to the wig shops (nothing fancy, but nothing expensive either):
Take downtown 1 train to 14th street. My Aveda stylist had scoped some out before we went shopping and settled on Wigs and Plus at 49 W. 14th Street (wigs are in the back). If you keep walking east, you will run into Ricky's and a couple other places.
They sell you a wig cap for $2 that lets you try on 3 wigs. (I'm going to buy more wig caps; I kind of like the look & feel!) But if you mention that you are undergoing chemo (and heck, mention that you 'know' someone undergoing chemo who recommended them, i.e., me), then they might let you try on 4 or 5.
I had help and wound up buying the first one I tried on. You might ask their advice; I bet they have a decent sense of what works/doesn't on various faces.
Good luck! For what it's worth, I also had long hair. I got it cut really short a few weeks ago, and you know, I look a lot better than I expected and have definitely enjoyed the ridiculously easy maintenance! So if you've been curious about having short hair or trying something different, pre-chemo can be an opportunity to do that.
And if you decide to go real short. . . I can recommend someone wonderful here in NYC.
As for your second re-excision -- boy. That is tough. (My cancer is pretty aggressive; they fear it started growing back pretty swiftly right after surgery. Bizarrely I kind of like it that my cancer is described as "aggressive." I'm not sure how I'd feel about my cancer being "timid" or lacking in self confidence...)
Welcome, Joia. You're in really excellent company.
May 18, 2008 11:47AM lewing wrote:
Joia, those websites are great - thanks for posting the links. Funny, but I was just thinking how orthodox I look in some of my clumsily- tied head wraps. Now I can at least do it right. Nice, too, to have various looks to choose from. (Right now my "look" is "please, let this thing hold together!")
I wish I'd had rockthebald's wig shop recommendation the last time I was in NYC (right before I started chemo). I knew there had to be wig shops catering to hipsters, but I didn't see any. (And I was right in that general area, too.) Ah, well - next trip. I'll be into the "T" portion of AC+T by then, and probably ready for a change.
Another NYC suggestion for fun "ethnic" looks would be to go to an Indian/Pakistani neighborhood and get some beautiful scarves. The area just off the Roosevelt Av. stop in Jackson Hts, Queens, would be one good bet. (Lots of good, cheap food options in the neighborhood, too.) I'm sure there are also places on Coney Island Ave in Brooklyn and in Manhattan as well.