Side Effects "Help"

[Brenda S]

I had my first chemo, Taxotere, carboplatin, herceptin, 8 days ago and had a neulasta shot 7 days ago. I was very sick-vomiting, chills, nausea, aches, and fatigue from day 3 to day 5. I still feel "achy", have developed mouth sores and still feel a fatigued and nauseous. Is this normal?
Thanks,
Brenda

[Brenda S]

I have developed motion sickness and have NEVER had this in my life.

[chrisy]

Brenda,

I'm not the best person to help, as I was very fortunate and tolerated chemo (T/C/H) very well.

What anti-nausea meds have you been given? There are a number of different ones, some of which work differently from each other and therefore can be taken together. In all cases, it is recommended to take them BEFORE you get really sick as it is easier to gain control. Work with your doctor/nurse to help you with this.

On the complementary side, acupuncture, acupressure and meditation there is evidence that these can help with nausea and possibly energy level. I had regular acupressure and "energy work" during chemo and I think this did help me. At worst, it falls into the "might help, can't hurt" category.

I did have very sensitive gum/mouth. Use a very mild toothpaste (I used Tom's of Maine) and if you use a mouthwash, make sure there is no alcohol in it. Biotene is a mild one that is recommended for use during chemo.

As you are learning, chemo is not fun but I think there still may be some things you can do that will make it easier. Just keeping yourself focused on the goal of completely defeating the cancer is also important. It's a pretty powerful "YES" that will stand up well!

Hang in there,
Chris

[mts]

Brenda-

So sorry you are feeling so poorly- and yes- totally normal. You can however, be a bit more prepared for the next infusion by premedicating with anti-nausea meds.
For me, the nausea triggered everything else. I took zofran the day of and after chemo -even when I had no symptoms and then had no symptoms at all !
Motion sickness is also part of it. Don't forget the chemo is also ransacking your hormone factory and this can cause side effects like motion sickness and pretty much anything else. Hot flashes, joint aches and even dry cracked heels are pretty common. You are getting the side effects of what chemo does to your body. Just think of it as working !!!
I did not get mouth sores, but my mother did- she had a recipe that was concocted by the pharmacist that included a base of pepto-bismol (it "sticks" to labial/lingual tissues) plus lidocaine and some kind of hemmorhoidal liquid--all mouth friendly stuff... it tasted fine and really soothed her mouth sores. Pretty much any pharmacist should be able to make something for you or at least the onc nurse will have some ideas as well. The vomiting certainly does not help mouth sores- so keep it fresh with water and lightly diluted salt. I know it sounds like it would hurt, but it really doesn't. Also, you can use cold, wet tea bags that have been chilled in the fridge. The tannic acid in the tea minimizes blood flow and keeps tissues from inflaming. Wrap the tea bag in something that wont let the teabag explode if you bite it, or just soak some soft gauze in pure, undiluted tea.

I never was one to thake even aspirin and was quite hesitant to premed with the zofran when I had no symptoms. But now I just sea it as a huge leap in the right direction. I am now a firm believer in the benefits of drugs.
Stay hydrated- eat ice chips if you can't swallow- you will find your rhythm- and you will get through it all.
I have said this before- watch out for constipation. If that has not hit you yet- it likely will. THAT was the most uncomfortable part of chemo for me.

Hang in there woman !!!!

maria

[BethC]

Brenda, yes totally normal. Tell your oncologist/nurse and they will adjust your meds for next time. That's the only way they know what works for you - trial and error and tweaking the dosages - so let them know. They don't want you to feel badly and they will give you more or different drugs to help. For me they added Emend, tripled the dexamethazone and added Ativan. It made a world of difference. They also had me take prilosec starting the day of chemo for a few days. And Tagamet right before the chemo.

The mouth sores are a bummer and they mean that your white blood cell count is low. If you start to run a fever of 100.4 go to the er right away and call your oncologist. The neulasta helps build white cells but does make you feel sore/tired.

I used a mouthwash and toothpaste called Biotene, which was mild and helped with the mouth sores.

For me, I felt like I had the flu for about 10 days after each treatment session. On day 11 I started to feel better and felt pretty good by the next infusion.

Hang in there, you'll feel better soon. The first time is the hardest.

Love,
Beth

[kcherub]

Oh, I am so sorry you are having a rough time! I agree in asking what kind of AN meds you were given! I took Emend and was never, ever had nausea. Well, I did feel "loopy", but that was the Ativan I determined.

I usually felt better by Day 10 when I went back for BW. I actually felt completely normal by then, so take heart--just two more days! My mouth would get funky around day 5, get worse, and then get better...

Keep your eye on the prize!

Take care,

[Patty F]

I found drinking ice water during chemo kept me from getting mouth sores.

[Patb]

Yes to the ice cubes and the neulasta shot was the
worst for me, like a train wreck.
patb

[Jean]

Taging onto Krista, the Emend was wonderful.
But you MUST take your meds on time and do not
stop taking them even if you feel great. I also had
Kytil. The pre-med should help avoid the severe nausea- check with your onc. becasue there are
many meds to help avoid /or at least minimize nausea.

All good wishes,
Jean

[harrie]

Toothpaste: Biotene or Rembrandt for Canker Sore Sufferers. These products do not contain the ingredient Sodium Laurel Sulfate which can promote sores.
You might try another type of antinausea med. There are so many out.
When I was feeling lousy, I would just keep trying to remind myself....temporary, temporary, temporary....gonna get through this! Worth the pain and suffering for the added assurance that it is exterminating those cancer cells!!

[madubois63]

Many good ideas above. I highly recommend drinking frozen drinks during infusion. This helps keep from getting mouth sore. Biotene is great. There is mouth wash and toothpaste. In addition, ask your doc about a prescription for "magic mouth wash." It will numb your mouth so that you can eat a little easier. Stay away form spicy foods for now. And eat you foods less than hot. Emend is suppose to be one of the best anti nausea meds around. I take zofran. You should start taking it the meds before you get sick and continue until after day 5. I had the same thing day 3 to 5. Ask everyone Not to cook highly smelly foods, especially during your day 3 - 5. I mean like garlic, fish...Keep cans of light veggie or chicken soups around. Pickled ginger helps with neasea, as does licorice (tea of the real old fashioned black string). Lemon drops are REALLY important. Carry and use them everywhere and all the time. That's all for now. I am sure I'll think of more when I wake up...Good luck!

[goops]

My oncolgist told me to rinse my mouth out with salt water to avoid the mouth sores. I did not do that as often as I should have, but when I started to get them I kept salt water in the bathroom and kitchen and rinsed my mouth every time I went into those rooms - the mouth sores cleared right up.

[Believe51]

Morning, sorry you are having these side effects. Get your doctor prescribe something for nausea and EMEND, Emend is a nausea drug you take for three days. Take these meds for nausea before the nausea and vomiting start. Be careful and ask what can be mixed, some drugs are great alone but not good together in the same day. Ask for whatever premends before chemo your doctor seems fit. The first chemo is usually the hardest, especially because you do not know what to expect.

As for the mouth sores, try eating popsicles DURING the infusions, something cold, ice chips. BIOTENE mouth products are great for the health of your mouth. Ed never had any problems, he also used to rinse with salt.

Basically my answers seem to be the same as our other friends here, just reassuring you. Now you know a bit a what to expect you can be more prepared.

I will be following your journey, please keep us informed. And I hope you are feeling better soon.>>Believe51

[Diane H]

Hi Brenda, excuse the big type font, I can't get it to turn off! You've gotten great advice on the nausea issue already. For me taxotere and neulasta made me feel so beat up with aches and pain. When I finally asked for some decent pain treatment it was such a relief. Allowed me to work and function so much better. Hugs, Diane

[Diane H]

Ok I see the large font does not show when posted.... yay!

[chris76]

I developed an alergic reaction to carboplatin. Make sure your fever does not continue. After they get the ani-nausea drugs correct you should feel better. They have come a long way with those drugs.

[dreen]

I will have my 2nd treatment of the same drugs this week. Personally, they were harder on me than the FEC. I am hoping this week will be vastly different.

My doctor also prescribed Emend and Kytril. Be aware they are really expensive dependent upon your prescription coverage. They work extremely well for me. I also tend to suck on hard candies to help keep the nausea at bay.

A friend asked a local pharmacist for suggestions and he led her Jolly Rancher Sours. They are so sour they make you smile while you suck on them, and they work remarkably well. They are pastel colored - not the transparent ones you typically see. If you can't find them in the store, they are a Hershey product you might find on line.

Remember,"This too shall pass"

Doreen

[harrie]

Doreen, please keep in mind, esp if you are experiencing reduced saliva from the meds, that sucking on hard candies may make you very susceptible to cavities. So if you still need to suck on the candies, be as careful as you can to have meticulous oral hygiene with brushing, flossing and possibly adding on an oral irrigator. Also, a fluorided mouthrinse would help.

[ElaineM]

Hi,
Great suggestions. Where can I get that toothpaste Harrie?
By the way, ginger is supposed to help nausea. I cook with it everyday. I think there also might be hard ginger candy to suck on. Somebody gave me a package. They were pretty good. Of course we should brush our teeth often, especially after eating something with sugar. Salt might have something that helps to clear up infections. I remember my grandfather using it on the wounds of his animals. It probably stung them, but the cut cleared up fast. My first oncolgist suggested rinsing with salt or baking soda ans water. Gargling with warm salt water helps me when I have throat congestion and colds.

[doh2pa]

I am on a very similar combo - carbo, herceptin and abraxane (a taxane like drug). My first treatment was horrible, but the second one was better, so I hope that will be the same for you.

You got some very good advice about the nausea and mouth sores, which should help. The only other thing I do is rinse with warm water and baking soda 4 times a day for the first 3 days after a treatment. It seems to help. Also, when you have the sores that pink stuff that the pharmacist concocts is great - it numbs them up and is very soothing.

One last thing I have to add is that marijuana does help with the nausea for me. I use it very infrequently but it works immediately for me and lasts a few hours.

Good luck - you will get through this!

[harrie]

Elaine, you can get the Rembrandt intense stain tp at Longs or I have also seen it at Walmart. Amazon.com also has it.

[anne2]

Try using Sea weed mouthrinse and toothpaste from Whole Foods. It helped my mom avoid mouth sores. If you must suck on candies, try ones without sugar and preferably xylitol because it helps to prevent cavities. Equally, I would see my dentist about calcium phosphate toothpastes availible by rx or you can try Enamelcare by Arm and Hammer OTC. I hope it will subside.
Anne

[abitjaded]

Sorry about your misery. Taxol made me feel like I had the flu for months.

When I rode in the car I felt awful. I do have motion sickness and felt really whirly. Could you have a dramamine or the like? Ask your care team.

Try, try, try to eat. Food helps, I have seen reports that suggest anorexia can exacerbate the side effects of Taxol (I could not eat and ended up with peripheral neauropathy). I was on lots of oxycodone for the misery (it really worked). Don't be afraid to ask for pain medication!! But had to drink Instant Breakfast, chase it with Metamucil and down a senna and colace to counter the constipation from the oxycodone.

My Dentist gave me a gel called Oxyfresh Dental Gel. After brushing with a really soft Rembrant brand brush with the Biotene, rinse and smear the gel around your mouth. Have them check your mouth for thrush and other infections.

Hang in.

Carla

[Ruth]

Taxol made me feel like I had the flu also. I lost a lot of weight ~ all my nursing baby weight and another 15 pounds happened on A/C with the mouth sores. I didn't know frozen drinks or popsicles could help until it was too late. I did get a prescription for this magic mouthwash but it only numbed my throat enough for a little while so I could eat quickly. Sugar hurt my throat worse so I stuck with mashed potatoes, rice and french onion soup. Yeast thrives in sugar so I didn't want to put any in there to give it energy!

Carla ~ Thanks for posting about the meds. I forgot what pain medication I took but it helped me sooooo very much and I wanted to tell her. I also tried to take it 6 hours before I knew the achiness would start. Mine was very consistent that I started hurting about 18 - 24 hours after treatment.

Brenda ~ hope you feel better! I wish we could help make this go away.

Hugs ~ Ruth

[Carolyns]

I suffered for two weeks until my Dr. put me on Aloxi. I get this in an I.V. just prior to the chemo along with a small dose of some type of steroid. My infusion is on Thursday morning and then by Saturday night I start using Zofran (pills) every 8 hours. It works like a dream for me. The only thing is that I must use Senekot S right away to avoid constipation.

This combo changed everything for me. I can function and keep hydrated. It is really important to drink as much as you can.

Good luck,

Carolyn

[westswon]

Hi Brenda. You need to really and strongly talk to your docs. I stopped the whole H-C-T after three treatments when I went and got a second opinion. I had dreadful reactions--hospitalized for the first one. It is NOT normal to be in such horrid pain--or no one would DO chemo. The nausea can be controlled, the aches from Neulasta -my WBC went to 35,000! created painful migraines. Stand up for yourself. Five years ago, neither of us would have even gotten chemo. I was incapacitated for months. Now another doc says in her 25 years she has never seen anyone so "over-treated".. find an ONC who ONLY treats breast cancer... just my two cents.. westswon