Game-changers: Tips for Managing Chemo Side Effects

[Superkim]

OK, so first off, I'm not a medical professional and everything I'm going to mention has been run by my oncologist. You should always check with your doctor before making any dietary changes or adding an alternative therapy to your routine.

Please also note, these are things that have help me out over the last several years. They may not work for everyone, but maybe a few of you can find some value in them.

That said, let's go!

Hair that's going to fall out:

Drugs like Taxol and Taxotere (and others) almost always cause hair loss. I've lost my hair a couple times and I can tell you this - it can be traumatic (even if you think you're prepared). So, here's what I suggest:

1. Cut your hair short before you start. Try that edgy or adorable pixie you've been too nervous to try. What have you got to lose. It will get you used to having less hair and it's awesome in the summer.

2. Baby your hair. Don't wash it every day. Don't brush it too often or use a lot of product. When you do wash it, use a gentle shampoo that is easy on the scalp. Your scalp will be sensitive when the hair is getting ready to go. It can also get itchy.

3.The shower is where you're going to lose the most and it's easier when there is less to lose. You'll usually notice the worst around 2 to 3 weeks.

4. This is the big one - have a close friend/or hairdresser on standby for when you need them. When your hair starts to really fall out, it's scary. You're going to want to shave it off and having a trusted friend when you need them it a lifesaver.

5. Get some cute (soft) caps that you can where and have them ready before you start chemo. Amazon has some great ones. Bigger Artsy or sparkly earnings with also help your look great when your hair is not a focal point.

6. Not everyone is going to want to wear a wig. Sometimes your head can be itchy or sensitive, or it's just a pain. Wait until you have lost your hair before you spend good money on a wig. Inexpensive, colorful, cosplay wigs are always a fun option when you're feeling funky.

Mouth Sours:

1. Oil Pulling: This is something that has helped with Avastin. The first time I woke up with bleeding blisters on my tongue, I thought I would lose my mind. The magic mouthwash and salt water rinses weren't helping. Here's what I do:

3/4 tsp of coconut oil (it will melt immediately in your mouth) 1 little dab of minty toothpaste - swish around in your mouth for 15 to 30 minutes.

*Note - saliva will build up as you do this, you may have to spit a little out as you do. crumble up some paper towels in the trash and spit into them. You don't want to put oil down the drain.

*Note 2- this can make your teeth sensitive (and a little whiter). I do it the day of chemo and for a next 2.

Since I started this, I don't get mouth sores anymore. Sure, my mouth still gets sensitive, but not more sores, blisters, or bleeding.

Skin:

Breakouts: When I am on chemo, my chest, face, and jawline break out. I have found that using an exfoliating acne wash works wonders. I use Neutrogena® Pink Grapefruit Acne Wash and I swear by it. If I start before the chemo starts, I never breakout. If I wait, it takes about 1-2 weeks to clear up. There may still be some small pimples that hang around, but nothing I have to cover up or be self conscious about.

Sunburn:

My skin gets so sensitive in the sun during chemo, but I love to swim. Here's what I have found.

1. swim shirts: they have saved my summer! I use long surf shirt from Lands End that are comfortable, light, dry quickly, and are quite cute. My shoulders, arms, and back stay protected and I look darn stylish.

2. Brimmed hat/baseball cap: I always were a hat. If I wear a baseball cap, I have a thin headband that I put on to cover my ears. Sunburned ears are awful.

3. Broad spectrum light weight, 35 or better face sunscreen: Spend the money and cover your face, neck, chest, hands, feet and ears with the good stuff. Your skin is invaluable, take care of it. Ovarian cancer is bad enough, why risk any type of skin cancer as well.

Tummy trouble, constipation, and acid reflux:

1. I eat every morning, even when I don't feel like it. It makes me feel instantly better. I learned this early on. Empty stomachs feel worse than full ones. But make sure you're feeding yourself good food. Bananas, oatmeal, avocado whole grain toast, granola are all good choices. Try and stay away from anything fatty or greasy.

2. Heartburn and Acid Re flux: Zantac (Ranitidine) has become my best friend. After finding out that heartburn/re flux can land you in the hospital with chest pains mimicking a heart attack or clot, I learned that the right antacid can save you pain and lots of trouble. I take it twice a day if I'm got symptoms and once a day when symptoms are gone throughout the chemo regimen.

3. Constipation: Ok, so depending on your drug/steroid combo, you may be experiencing constipation/ diarrhea, or both. This is for constipation (as it has helped me). MiraLAX (polyethylene glycol 3350) is my go to powder. I use it once a day and add it to my smoothies, oatmeal or juice. It is not harsh on the body and keeps my bowels moving. I start the day before I start chemo and take it once a day until I feel back to normal (anywhere from 3 to 9 days) Make sure you are drinking plenty of water and eating a good amount of fiber.

And again, always check with your doctor.

Food for healing:

Eat more - Fruits, vegetables, whole grains, seeds, nuts, legumes, greens, lots of fresh water and de-caf tea. ***All of these foods are health promoting and aid in boosting your immune system. Try to add them to you meals and crowd out the junk food.

Eat less - processed meats, cheese, candy, chips, sugary treats, pasta, soft-drinks, and coffee. None of these over processed foods will help you recover faster, try to cut them back when possible.

Exercise:

If it is at all possible, move a little every day. On chemo days, I go home and take a nap and then I get up and walk. Even if it's just around the parking lot. The hard part is getting off the couch, but it's like eating breakfast, once I make the decision to do it, I feel much better.

I don't always make it to the gym, but I can usually walk at least 20 minutes every day. I'll tell you what, even when I feel crappy, I feel less crappy if I can walk. And if I can grab a friend to join me, it's even better.

Well, I hope that you found something helpful in my (long) list of recovery tips. Over the last 11 years, I've learned a lot. And just a little about me: I was diagnosed in 2007 at age 39 with low grade serous carcinoma, ovarian 3c. Longest remission 7 years. Currently on Cisplatin, Gemcitabine, and Avastin. Other than the cancer, I'm a pretty healthy chic

Hugs to all,

Superkim

[Petrolhead]

Hi Kim

Interesting post. Good job we are not all the same.

I chose not to cut hair short even though I knew I would lose it. The reason being that longer hairs were easier to clear up that very short ones all over the place. I made sure I brushed really well in the morning so that most came out on the brush so easily dealt with. No clogging up of the shower for me. Saying that the plug hole duty is allocated to my other half. 😁

I used same shampoo and stuff as normal when hairless and during regrowth with no problems. I thought that losing my hair would bother me but it didn’t. Part of what happens- deal with I thought. And also I had my wigs.

Luckily I never had any stomach problems.

I wore normal earrings for me as I felt although I had cancer I was still the same person and knew what suited me best.

I invested in my wig before I lost my hair so that the wig place knew the look I wanted. It was never itchy or hot. Maybe I was lucky or chose the right quality of wig. It was surprising how many people did not realise I was even wearing a wig. Definitely worth investing in the soft caps which I wore at night - mainly for warmth. Sometimes wore them when I had the top down on the car as I did not want to lose the wig in the wind- embarrassing and expensive 😂

For my breakouts I got Clindamycin lotion from the GP which is also used by acne sufferers. A useful alternative to know about.

I decided I wanted my life to be as normal as possible so did not change my diet at all as I rather liked things as they were.

As for the dreaded constipation there have been many posts on this. For my go to was Lactulose with a stool softener (docusate) if needed. Also loads of water whenever possible.

I did not exercise more than normal during or after chemo as I said before I wanted my life to be as normal as it could be for me. I worked all through treatment (only had 4 weeks off for the op but wanted to return after 2 weeks really as I felt ok).

As I said it is interesting in the different approaches made by different people and what works for individuals.

I hope your current regime is going well for you as you certainly have your regime for dealing with any problems well covered.

Best wishes

Fay

[Superkim in reply to Petrolhead]

Hey Fay,

You're absolutely right, we are not all the same and these are just the things that have helped me. Just options, definitely not a one size fits all recipe. But they are tools I wish I had in my arsenal on the first couple go rounds.

All the best to you!

Superkim

[gmc920]

Great tips! I think I’m going to try the oil pulling with coconut oil. My mouth and gums have been really sore for the past month, and I’m thinking it may be the cumulative effect of Avastin. If anyone has been having irritation with their regular toothpaste, I’ve found a good alternative called “Squigle”. It doesn’t contain any irritants like SLS (sodium lauryl sulfate), and is very gentle and moisturizing. Worth a try if you’re dealing with any mouth sores, and it may even help prevent them 🤞I haven’t seen it in stores, but I order it from Amazon.

Thanks again and Best Wishes!

xx Gina

[Superkim in reply to gmc920]

Yeah, give it a try, it can't hurt. The Avastin really messed up my mouth and my pallet. I can't do spicy foods at all anymore and for some reason, pineapple burns my tongue and all the way down my throat. But, the world won't end without pineapple...lol.

I will definitely check out the Squigle toothpaste!

All the best to you, Gina!

[gmc920 in reply to Superkim]

Yeah, I can’t do spicy foods at all anymore, either, and I used to enjoy them! I have had good luck with the Squigle toothpaste. I once inadvertently grabbed my old toothpaste by mistake and started brushing with it. Immediately my whole mouth started burning, and I realized the mistake. My mouth couldn’t tolerate my previous toothpaste, but I have no irritation with Squigle. Hope it helps you, too! 😊xx Gina

[Superkim in reply to gmc920]

Ah chemo drugs....what fun! Squigle here I come

[Solange in reply to gmc920]

Another tip that helped me : children's toothpaste and using my electric toothbrush. The head has a small round toothbrush, much smaller than a normal toothbrush, just goes in tiny circles automatically, so is kinder on my gums. Solange xx😊

[Superkim in reply to Solange]

Hey, Solange!

I do use an electric toothbrush, but sometimes the back gums get a little irritated. For the rest of my mouth, I love it. And there are lots of different tips that make it really customizable.

[Purple-iris]

Hi

Just to add. We don’t all have the many side effects that they mention before your chemo. It’s very individual and your team and CNS can do lots to help if you keep them informed. I was a bit out of sorts for week 1 but then ok week 2 and 3 and just achy from Avastin and mouth sensitive to hard food .

I was also advised to sort wig before chemo to match hair colour and style if that’s important to you. I didn’t actually use it as tried the cold cap and although my hair thinned I kept most of it so may be worth a try. If you can stand the first 10 minutes the next 6 hours are a doddle !

My main side effect with chemo for week 1 was constipation and I took laxidoo recommended by nurse which worked well.

Didn’t change my diet, was already eating relatively healthy and still enjoy my treats. Also important to maintain weight while having chemo so think the advice is eat small and often if you do go off food and what you fancy and speak to CNS or dietician for help to maintain weight.

Best wishes to all those having and recovering from treatment.

Hope you are all able to do something you enjoy today. Remember to protect your skin in this sun, I’m 2 years since firstline and still a sensitive flower 💜

Love Kim x

[Superkim in reply to Purple-iris]

Hey Kim!

I'm glad you were able to mitigate or avoid a lot of the chemo side effects. And like I mentioned at the beginning of the post, these are things that I found helpful. I wanted to share for anyone who may be able to relate or find value in them.

I'm glad you doing well after first line and I hope you continue to be healthly!

All the best to you,

Superkim

[Small_bump]

This is a very useful post (including all the replies) so thank you! I am awaiting surgery this week and will find out soon after if I need chemo so it is good to know that there are ways to stave off some of the side effects.

I hope you are doing well on your current regime,

Emma x

[Superkim in reply to Small_bump]

Hey there, Emma!

I know there is so much information out there it can be daunting, but hang in there and know that you are surrounded by women here who can truly empathize and support you.

Good luck with your surgery and keep that positive attitude! I'll keep you in my thoughts.

Hugs,

Superkim

[Hidden]

I love these, have found a few myself but others not especially the skin break out one. Thank you! I think this list could be classed as a must for anyone facing treatment. ❤️❤️❤️

[Superkim in reply to Hidden]

Thank you, Lias!

Glad you found the post helpful. I know everyone has a different experience, but there's a lot of crossover.

All the best to you!

[delia2]

Thanks for taking the time to write this. These types of advice are one of the things I love about this forum. I’ve only had frontline so far and found it rough but I am trying to be prepared for the future.

[Superkim]

Hey there, Delia!

My first treatment was rough too. Scary rough. I'm glad you liked the post, there's more stuff, but those were the things I see people asking about most.

I'll tell you what, the two biggest things are positive attitude and support. If you've got those, everything else is gravy. I know its sound cliche, but it's TRUE.

There's a saying....

Life is 10% what happens to us and 90% how we react to it.

All the best to you!

Superkim

[chasse10]

Thank you. Very helpful.

[Artgreen]

Thank you! Lovely to hear another low grader who has done so well for so long.

A x

[IrishMollyO]

Hi SuperKim

I'm a veteran like yourself but not for so long. I was diagnosed in 2011 with stage 3 c high grade inoperable PPC . After being treated with Carbo/TaxoI for six sessions I was declared NED and remained so until 2016 when it recurred in my peri Aortic lymph nodes . This time I was treated with Carbo only which I feel should have included TaxoI. At the moment I am being treated with the combination I wanted three years ago. There's no doubt it's a tough regime and now three years older it 74 it doesn't get easier !

At last I'm getting to the point of my reply to you. Apart from your very good advice on all aspects of care during and after chemo ! was particularly interested in your information on Reflux. I have experienced that heart attack feeling a number of times . The first time was on my way into my second infusion three years ago. I was immediately given an ECG . Nothing wrong with my heart so it was put down to an attack of anxiety.

I didnt experience it again until this year when I got that heart attack feeling in the middle of the night about three times. I just sat up and made myself calm by breathing deeply and it always went away.

Then I read your post last week and it all made sense. It really reassured me. In my pre chemo chat yesterday for my second last infusion I mentioned it and he didn't seem unduly worried about it.

However twenty minutes before finishing my second last infusion of TaxoI I got a really severe attack. My nurse was nearby and called the doctor who ordered an ECG. So the upshot of all that is they have ordered an overnight heart monitor ! Maybe there is an underlying heart problem in my case but I prefer your simpler explanation. Is there a medical journal I can quote from so my next discussion with my oncologist ? Thanks again.

X X

Molly

💚💕

[Superkim in reply to IrishMollyO]

Hey there, Molly

So, I have had acid/reflux issues before with chemo. It just always presents differently so I'm never sure. Once, as a painful lump in my throat, or, this last time as a serious pain/pressure in the center of my chest. For me, the chemo creates a this problem. And I should just start the anti-acid right away as a prevention.

That said, I always call my docs when there is any chest pain because you never know. The drugs we're on are heavy duty and you need to be vigilant.

If, however, you know you might be prone to heartburn or acid reflux, you might be able to sidestep it by taking an antacid proactively throughout the chemo and save yourself some unnecessary heartache (pun intended). Of course, always check with your doctors.

I'm sorry you're dealing with all of this, but I'm glad you're doing alright after experiencing that heart attack. Must have been really scary.

I try to always pay attention to my body and write things down. Only we know how we're feeling and we shouldn't let anyone dismiss a concern or question we have. We are our best advocates!

Hugs,

Superkim

[IrishMollyO]

Dear SuperKim

Thanks again for your very detailed reply. I have calmed down today about the whole episode. It may well be the reflux and I still hope it is. My blood pressure was normal as I take BP tablets but he did ask if I had ever been diagnosed with Angina as I know from Dr Google it is one of the symptoms. Plus my dad had Angina and died at 63. Maybe yesterday's incident was a blessing in disguise for me. If I do have it I think it can be treated with medication. At least I hope so ! It is now filed away until I get my app for the heart monitor. I will now concentrate on the neuropathy that will come crawling through my legs like a rusty chain with nails as soon as I finish my steroids. They reduced my TaxoI by. 20% which I did not object to ! Oh the joys of chemo! I just read back your original post to see if you had any magic remedy for the rusty chains ! Maybe you were lucky enough not to get it . Thanks again. X

Molly

💚💕

[Superkim in reply to IrishMollyO]

You are very welcome!

I'm very lucky, I do not generally get nephropathy. I little numbness, but that's the extent.

I will share something though. (And this is just anecdotal for what's it's worth), My first chemo was Taxol/Carb. I had some bad reactions and my oncologist switched me from Taxol to Taxotere.

Here is my understanding as my oncologist presented it: Taxol is made from the bark of the yew tree. Taxotere is a synthetic version of Taxol created to overcome the shortage of bark available from the Pacific Yew. While the Taxotere (created completely in a lab) is exactly the same every time, the Taxol (being synthesized from bark) can can be susceptible to minuscule strength variations and some people are more sensitive to those variations.

He told me that it is possible to get the same result with Taxotere as Taxol, but with less of the side effects. He said it's not a given, but it happens. When I switched over to Taxotere (3rd cycle of six) my rashes, hives, itching, and overall fatigue were lessened significantly.

Like I said, just my experience.

Here's a link.

gilmanbedigian.com/taxotere...

-Superkim

[IrishMollyO]

Thanks SuperKim

You are a mine of information and I really appreciate you taking the time to reply. I carefully read the link but a group of legal eagles kept butting in. I think I have seen Irish women on this website who are on it but I was never offered it. I did read that in that link that a small percentage of women get permanent hair loss and with my luck I would be one of those women! Thanks again . It's about time I put up a proper post and stop floating around the edges😊 best wishes to you and I will keep an eye on your story. You are inspiring. Take care. X.X Molly. 💚💕

[twiggy66]

Hi Artgreen i too am a low grader had my op in 2012 everything gone I didn’t need including omentum. Had a reoccurrence in 2016 & was lucky enough to be put on a trial called Trametinib 1st year had horrible side effects but everything has settled now 🤞my prof says nothing’s shrinking but not gettting any bigger either, so hopefully stays that way. Hugs xx