Tips for getting through chemotherapy
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Hi, everyone:
I have a friend who recently found out she has breast cancer. She has started chemo and has had two treatments so far. I have two questions that I'm hoping you all can help with.
My friend has lost all her hair, which she knew would happen, but no one told her that she would have "hair pain" from the hair that is trying to grow back already and is causing small blisters all over her head. Has anyone experienced this? If so, what did you do.
Also, she was told she might get mouth sores. That has not happened but she does have sores on her bottom. Again, has anyone else experienced this?
She is going to call her doctor but I thought maybe some of you might have experienced some of these things.
Thanks,
Marcia
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For the bottom area, she might try to use Tucks medicated wipes. They are for hemorrhoids but help with swelling. Also, tell her to get some of those flushable wipes and use them either instead of or along with T.P. All tissues are sensitive right now.
I don't know about the hair thing. I think I heard about it from others, but can't remember right now what they did. Hopefully someone else will check in! Good luck to your friend!
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Marcia
I had those sores on my bottom as well. My onc. gave me a script for some kind of medicated Anusol. That really helped. Also taking sitz baths in warm water 3 -4 x/day helped. Definitely get the flushable wipes, and get a bottle of pure witch hazel (not the medicated kind), pour the bottle directly on the opened box of wipes to thoroughly soak them. Use these soaked wipes - very soothing.
Sorry I can't help with the hair issue - maybe someone else will chime in.
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bump
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HI, JUST HAD MY SECOND TREATMENT OF A/C. WAS ALSO GIVEN ZOFRAN,ATIVAN AND DECADRON. DID ANYONE GET A SEVERE HEADACHE? I CAN'T EVEN DEAL WITH LIGHTS. IT DOES COME AND GO BUT WHEN IT COMES IT'S BRUTAL. I TAKE 800 MG MOTRIN EVERY 8 HOURS WITH 500 TYLENOL IN BETWEEN. THE HEARTBURN IS SECOND WORST BUT PRILOSEC OTC TWICE A DAY SEEMS TO KEEP IT MINIMAL. ANY THOUGHTS ON THE HEADACHE ANYONE. ALSO NOT SLEEPING AT NIGHT AT ALL EVEN WITH 1 MG ATIVAN. THANKS FOR ANY HELP. I NEED IT.
LOVE LOVE
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IS ANYONE GAINING ANY WEIGHT OUT THERE DURING AC CHEMO. 10 LBS IN 3 WEEKS AND I DIDN'T THINK I WAS FEELING GREAT. ANY OTHERS?
KAREN
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Hi:
I am not on AC but it is common to gain weight during chemo, both from excess fluid and the foods that you may be eating. Since food doesn't taste very well, we may gravitate toward different foods. I know with me, after 7 days of metal mouth, sometimes I feel entitled to eat anything that actually doesn't taste like tin or paste.
I sent your a private message as you are in the same town as me.
Peeps
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I am going for my 3rd AC on Thurs., I have been extrememy emotional since my last tx. I don't know whats wrong with me?? I was handeling it all so well, and now I seem to be falling apart! I can not turn off the tears...
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Dear Patti, My heart goes out to you. I bet anything you HAVE been handling it all really well, but it is also completely understandable that you're feeling pretty emotional, too. Heck, if we can't come unglued when we have cancer and are undergoing chemo, when CAN a woman come unglued? Although it sounds strange, I try to see my tears and my sad times as part of what makes me strong. I see them as evidence that I am paying attention to my feelings, all of my feelings.** I know I must sound like a broken record, but I would urge you to be kind to yourself. Wrap yourself in some flannel, have that wonderful hubby of yours bring you a cup of tea, and go ahead and have a good cry.
And give yourself a pat on the back, too. Because you found your way to these boards. (You might want to find a chemo group that started in teh same month as you, e.g., "October 2008" -- I don't know where I'd be without my May '08 sisters!)
Take good care, Rock.
**Having said that, I do think there is a difference between the "good tears" that are natural part of life, and the bleakness of being depressed.
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I just read this entire thread and just wanted to thank everyone who contributed to it.
I will start chemo in either dec '08 or jan '09 and I'm going to start collecting all the products that you mention.
thanks so much!
Lisa
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I will have my first treatment on December 29th and I still have so much fear about the whole damn thing! I appreciate all the posts. Thank you.
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I had my first treatment two days ago and I wanted to share something that was really helpful. I decided on a regimen that supposedly has less nausea than a second type my oncologist and I had discussed, so she was going to skip the post-chemo prescription for Zofran. But I had read an article that said that listed the following as risks for CINV (chemo-induced nausea and vomiting): <50 years old, female, vomiting during previous chemo, pregnancy-induced nausea/vomiting, history of motion sickness, anxiety. Since I fit into several of those, she didn't hesitate to give me the meds. Even with the Zofran, I still had slight nausea, so I am very glad I have it. The article can be found at: http://www.communityoncology.net/journal/articles/0404s103.pdf
Had tx #2 yesterday and because of the mild nausea I still had, she added Emend along with the Zofran and so far, so good!
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I just wanted to add a little tidbit that I discovered in post surgery recovery.
If you get nauseated take a alcohol swip and swifty fan it near your nose for a few minutes. I went from vomiting to very mild nausea passing within minutes. And then no nausea. So we went to the store and stocked up on them for other times and it works most of the time! I hope that helps someone like me, I definately hate nausea/vomiting times.
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the thing that helped me most was a 'tea' i made of slivered ginger, from the advice of my neighborhood thai grocery. I would take about a 2 inch piece of ginger, slice it and then slice it into strips. I'd boil them. i would drink this 2 or 3 times a day. i was regular, and kept my appetite altho i generally ate less and lost about 10 pounds overall (in preparation for living without a boob).
i never was nauseous, never took my nausea meds except for the 1st couple days out of a sense of duty.
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Hi -
My surgery is scheduled for 1/9 -but so far my tumor measures 3.5 cm per latest ultrasound, and it seems to be inevitable that I will have to undergo a bout of chemo. Here is a silly question, but I want to be certain: can one enjoy an occasional glass of wine while undergoing this treatment?
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Also - can one still have an occasional cigarette, or shall I begin the patch posthaste?
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Britt
I'm a smoker and have smoked all thru chemo.....granted once it "hit" they made me nauseous...(one would think I would be smart enuff to quit then).........and a friend of mine is on huge doses of Taxol and does occasionally drink a glass of wine....but to be on the safe side, would ask your doc.....
Luv, hugs and prayers
Deb
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Thanks, Deb -
That sounds promising - one is under enough stress without trying to quit! I will ask my doctor about the wine, however, when the time comes. Many hugs and prayers to you,
Maria
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Britt - DH and I attended a chemo info class at our hospital today run by one of the pharmacists. We were the only two attending. DH asked about wine and she said a glass now and then should be fine so long as they would not interfer with other drugs you might be taking, like an anti-anxiety drug or sleep aid, which are not uncommon while on chemo.
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I have a glass of wine or beer now and then on chemo, but mostly on week 3 of my 3 week cycle.
Even if there are no medical issues, during weeks 1 and 2, my sense of taste is changed a bit by chemo so wine doesn't always taste good.0 -
I think I will forever remain an avid buyer of the Biotene Mouthwash. I absolutely love the after taste it leaves because the toothpaste leaves a lot to be desired. So once I brush my teeth, I use the mouthwash and viola, I love it!!!! They will have me buying that mouthwash/rinse for life!
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A tip about the green tea oil for nails. I tried it and after two treatments my nails and the tips of my fingers were were really dried out. I got some almond oil, warmed it a bit and soaked my fingertips in it for a few minutes twice that day. Voila! Dryness gone! An added advantage is that the tea tree oil stinks and the almond oil had practically no smell.
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Let me throw in my two cent's worth. I was on 4 rounds of FEC 2 years ago...Had hellacious mouth sores and problems with smells and taste aversions. Just the smell of my house made me nauseous (no jokes about my house-keeping, here! it was CLEAN)...I had a compound pharmacy custom-mix some mouth-wash that treated the thrush (get a script from your oncologist or GP) and they mixed it with a lovely peppermint flavour, instead of the nasty fake kool-aid flavour (who wants FRUIT taste in their mouth??) that they mixed at Princess Margaret Cancer Hospital Pharmacy. You'd think they'd know better....Check your yellow-pages for compound pharmacies or ask your pharmacist. After that, I reasoned that the thrush was caused by chemo killing off all the good bacteria in my gut. So I took Bio-K yogurt-type (actually soured milk) product which has tons more active bacteria than any of the usual yogurts like Activia, etc. It's expensive, but you don't have to take it forever...I can't recommend it highly enough. It also got rid of my smell aversion problems. I did check with the oncologist who had no problem with me using the Bio-K, but check with your own team before embarking on ANY suggestions for supplements or food-related treatments that people make here or anywhere else.
I'd also recommend to NOT eat processed foods if you can help it. Anything processed, convenience foods etc., that I ate, tasted horrible (I thought I could taste the chemicals) and made me realize how unhealthy they are...I think. If you must, because you don't have energy, that's okay, but try to either cook simple real foods (rice, potatoes, green vegetables, fruits, eggs, all those good things) or get a loved one to cook or steam simple foods. Many people think that sugar feeds cancer, and I agree: I also think it exacerbates smell and taste aversions, and feeds the yeast that causes the thrush that causes the mouth sores.
A word of caution: someone recommended using a lint roller to remove hair. That may work for some, but for me, I blithely used it on my head, finding it mildly amusing and effective...within a few minutes, my scalp was so sore that I couldn't rest it on a pillow, couldn't sleep, for the pain it caused (I guess I was sensitive to having the bits with roots pulled out). I would recommend a simple shaver with a hair attachment, which won't risk cutting your scalp, and trims the hair to about an 1/8" or 1/4", which, when it finally falls out, won't make such a mess. It's the long bits everywhere that's such a hassle...I think we all know instinctively when it's time to shave it off, if we're going that route. I was glad when I finally did it. You can do it yourself, or your hairdresser or even a barber will do it for you, and not likely charge you for it.
Careful with your favourite foods when you know you might be nauseous. You can ruin your taste for them for a long time. Mac & Cheese used to be a rare comfort food for me. Can't even imagine eating it now after eating it right after chemo. As a joke, I thought it might be good to eat dough-nuts right after chemo, hoping to get a permanent aversion for them. No such luck!
Best thoughts to everyone out there going through a difficult time with it. It's not nice, but it doesn't last long, the time sort of drags and flies all at the same time, and with the passage of time, you heal from the memories....and you get better, and you get your energy back, and your hair grows back, sometimes a tad wonky, but it does come back. Focus on the other side of your treatment.
One more thing: this is the time to really take advantage of your GP...I'm in Canada and it's free to go as often as we need to, but my GP was worth her weight in gold by coordinating my treatment, dealing with side-effects my oncologists or surgeons didn't really help with...she was a rock, and a source of comfort and drugs...what more can you ask for? Even if I would have had to pay for her services, I would have gladly paid for her advice and support.
Good luck!
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NEULASTA OR NEUPOGEN PAIN?
What are the manufacturers thinking, "take some Tylenol." Yeah, right! They also say only 5% experience significant pain, but everyone I talk to says they have significant pain, and are very unhappy with Vicadin and its little cousins--Vicadaze, Vicasleep-all-day, Vica-toxic, Vica-nausea Vica-constipation. And by the way, I still had pain for 2-3 days, worse on the Neupogen than the Neulasta. I tried alternating with 3 Ibuprofen a couple cycles, and just wound up more toxic with the Vica-paralysis of my elimination system!
So here is my brief history and my big discovery: Lumpectomy in July '08. 4/6 nodes active. Just finished 4 AC and 4 Taxol, all dose dense. 8 shots of Neupogen after the first 3 treatments, then switched to single shot of Neulasta to see if it was easier on me, which it was, as I only had 2-3 pain days instead of 5 (3 at the beginning and 2 more on day 7 and 8.) Neupogen hurt my bones a lot (level 10, and I am not a wimp), and Neulasta hurt my skin, tissues, capillaries--even puling on underwear hurt, (level 7 and fatiguing).
Well, with the Taxol, I took 20 mg Dexameth (steroids) the night before, 20 mg the morning of, and then there was some in the "juice" as well to prevent allergic reaction and nausea, which perfectly covered any of this that I might have had. Once home, I took 2 Benadryl to help me sleep through the steroid "wide awake" effect. The next day, I would get my Neulasta shot midday, and by midafternoon I would feel the steroids wearing off, and by 7 or 8 pm I would feel the pain coming and take my first Vicadin which continued for 2-3 days around the clock, but as minimally as I could bear.
I started noticing a connection between the steroids wearing off and the onset of Neulasta pain. I began wondering if the antiinflamatory benefits of the steroids could help the pain, I asked my otherwise fairly unhelpful Onc for a refill of the Dexameth. He said it would not effect the Taxol effectiveness, and allowed me to try.
I took 12 mg of the steroids on the morning of the Neulasta shot, and the next 2 days. I DID NOT HAVE ANY PAIN, AND TOOK NO VICADIN AT ALL! Hence, I had MUCH LESS constipation troubles, no toxic feeling, and of course the mixed temptation of great energy, which I used all up at my New Year's Eve tango party. I did taper off the steroids (8mg, 4 mg, 0), and had some very tired days after that, but this was on my 8th and final chemo, which wipes us all out, no?
I realize steroids are serious business, but so is Vicadin!! My family was amazed, and upset that the Dr.s and nurses didn't think of this. I am writing them the account, and hope this helps someone else--before their final treatment!
Indefense of the Neulasta, I must say that my "white blood numbers" stayed very high, and I never got sick. Except when I looked at the cost. There is no generic, and my out of pocket was $700 per shot. Ugh. It's only money, and a good investment at that.
I pray this gets to the people who need it most. I am new here, and so far unfamiliar with how to navigate and post and bump and all that. Thanks for everyone's great tips and encouragement.
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Hi will probably be starting chemo shortly - I live in the UK so these bands and site are unknown to me, can anyone suggest UK brands??
Thanks - any adive much apprciated
xxx
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re: neulasta shot - my med onc told me to take claritin (not claritin D) three hours before the neulasta shot and one more the evening of. then two/day for one week after the shot. i have felt absolutely no side effects at all from the shot.
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I will be having chemo assigned and just curious, as I just completed a bilateral mx and recon, so healing is first... not sure what protocol I am having so will the side affects always be the same for all? All i know is, i wil have 4 treatments in 9 weeks. Once I am healed from the surgery, i will have a taping of what i will be doin at the Medical Center etc.
Of course, i was not expecting chemo after deciding the surgery, but I do understand why and need to do all I can NOW. Just curious if protocols vary and symptoms? AM new so this may be a stupiid question. I am already on Ambien CR as am having a hard time sleeping still. I plan to put together a good bag of remedies for chemo as the posts here are so helpful!
Thanks in advance. It is the fear of the unknown and what to expect that is the hardest for me. I automatically went to the worse scenario as I am just a type of person who really is into wellness and holistic care and cannot imagine how the body takes all of that poison in!!
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The chemo protocols aren't all the same as far as side effects, but there is a lot of overlap. Chemo drugs tend to affect cells that reproduce quickly which covers blood cell production and mucous membrane tissues as well as cancer cells.
But also people getting the same drugs don't necessarily get the same side effects. Many side effects only affect a small percentage of the people getting a drug. That is why it is helpful to lay in supplies for what you might need but you probably won't need everything.
I found the http://chemocare.com/ website helpful on finding out about the common side effects of each chemo drug. In the US, it seems that the most common chemos for HER2- early stage are TC (Taxotere and Cytoxan) or AC-T (Adriamycin and Cytoxan followed by Taxol). Taxotere and Taxol are similar drugs, both are Taxanes and so sometimes one or the other will be used. Sometimes Carboplatin is used instead of Cytoxan.
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Thanks Bluedasher. I appreciate this and will once I get my protocol assigned it may make more sense. I will look up the webiste also and thank you! Like your saying at the end... it is soothing and true!!!!Hope all is goin well for you.0
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Thanks to all who have contributed here. I have my shopping list now!
Does anyone know of a website that provides more TIMING related info regarding when dif side effects tend to occur - based upon the specific drug? I have read that some drugs are more likely to cause nausea quickly, others after some delay.
I know everyone is different, but I would think there is some most likely scenario that could be painted as to what to expect for each drug. I'm trying to nail down my chemo schedule and continue working, so this info would be most helpful.
Thanks again all!
E
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