First Chemo - Any advice?

[Lind58]

I am taking my mom for her first chemo on Friday following her debulking surgery (5 weeks out). Any recommendations? How will she feel after? Any encouraging advice?

She will be receiving Carbo & Taxol.

[Lindaura]

Gosh, Lind, welcome to the beginning of an adventure nobody wants.

It’s great that you will be there to support your mom.

Carbo/Taxol is the gold standard for destroying Ovarian Cancer, but we all react to it differently.

First, you should be prepared for the length of time it takes to receive the infusion. 6 hours at a minimum, so it is an all day affair.

If things go well, she should feel pretty good for the first 3 days, but she must be sure to take all he accompanying meds to stave off nausea and she must drink a lot of liquids, water preferably.

This is where you can really be a help, making sure she has a fresh bottle or glass by her bedside.

Most of us get a weird or even nasty taste in our mouths and our tastebuds go all wonky, so nothing tastes very good and we have a hard time finding anything we can eat.

Sometimes we have to rely on a food supplement called ensure or Fortisip.

I found that creamy mashed potatoes worked one day and then cheese and tomato sandwiches worked the next.

Wrack your brain for anything edible, Cheerios, rice crispies, chocolate pudding, French fries. Absolutely anything!

If nausea gets too bad, ask the doctor to prescribe Emend (Aprepitant). Take anti nausea medication prophylacticly.

Ondansetron and Omeprazole 30 minutes before eating, and Docusate sodium (against constipation) after. Cyclazine is also a good benign anti nausea med that you can take almost any time.

She may get other side effects that are pretty distressing, like bone pain in her legs, fatigue and breathlessness. Icy feet and ankles and general listlessness.

If breathlessness gets bad, she should call the Chemo emergency line.

The Chemo will depress her bone marrow, which will affect her oxygen carrying hemaglobin.

Some ladies sail right through Chemo.

I was not one of them.

It’s good to have a TV subscription to Netflix and have a TV in her bedroom, and to be situated near a toilet.

It’s good to have supportive family members to pitch in for cooking and housekeeping.

She will lose her hair, probably beginning the end of the third week. It’s a bonus , because she will know that the Chemo is reaching her entire body all the way to her hair follicles. Wigs are cheaper nowadays and can look amazing.

If you are in the UK, the MacMillan Cancer Charity will help you find and fit a great wig. Also they can help you with financial Benefits and getting a blue Badge for your car.

So, that’s enough from me. I wish you all an easy ride on this rollercoaster.

Kind regards,

Laura

[Lind58 in reply to Lindaura]

Laura, thank you so much for your reply! Super informative. We are actually located in NYC. We hope she doesn’t loose her hair as I got her fitted for the cold cap. Fingers crossed it will be effective. Not that it’s so important to me, I just want the best results from her treatment. But for her it is very important.

Your advice is super useful and definitely will come in handy.

[Katmal-UK in reply to Lindaura]

Brilliant reply Linda, covered all the right info!

[Cropcrop in reply to Lindaura]

Nailed it Laura!

Hi Linda, welcometo our lovely gang, the advice here is superb and there’s always somebody who will have the answers you need. Feel free to ask anything at anytime, no question is too small or too big. We’re all here to support both you and your Mom through this whole experience.

I would just add to all the fabulous advice Laura has given that your Mom needs to be really well hydrated on the day the chemo is administered, it makes access to the veins much easier for cannulation access. Thank you for being there for your Mom, I’m sure she really appreciates your support, it’s so important we have reliable support during this whole process.

I hope the chemo goes well for your Mom and that her side effects are minimal but it’s so important to have as much knowledge as possible. Best wishes and love from across the pond ❤️Xx Jane

[Maus123]

Laura has it covered.

I would maybe add that I took 1 to 2 Movicol (stool softener sachets), usually from the day before chemo and through the first few days after, to counter the constipating effects of Ondansetron/ Granisetron. No longer because

from day 4 onward, the problem turned around and I got to enjoy diarrhea instead, which lasted until day 7 or so. Pantyliners/nappies and an unobstructed & well lit route to the loo, plus a travel bidet... that was the way for me to cope.

Emend was a great help for me too, keeping nausea in check. I never threw up during chemo.

If she wants, she could consider scalp cooling (via cold cap from the hospital) to try and reduce hair loss. I didn't bother. Maybe buy her a few soft hats and scarves, also to wear at night.

Similarly, she could apply cold gel packs for cooling her feet/hands to try and avoid/minimize peripheral neuropathy damage from Taxol. I did that on my own initiative (starting 15 mins prior to the Taxol infusion and keeping them in until 15 mins after, changing every 30-45 mins or so). Success was mixed. My hands are fine. My feet got hit by nerve pain.

I also applied silicium based nail base, polish and top coat to try and prevent nail damage. My nails are fine.

Expect her to be tired, and wanting to stay put in bed some days.

All in all, it wasn't as bad as I'd feared, for me.

But everbody is different. Just be prepared to ask for help and act quickly, should she experience any unusual pain, symptoms or any fever. The one time I contacted the onc hotline was when I ran into an annoying skin problem on my scalp and couldn't sleep anymore because of it. Got help & went back to the routine.

Best of luck with the chemo. Maus

[ssjmichael]

Hi Lind, two things that I believe really helped my mom out during chemo are:

1.) L-glutamine powder - This stuff supposedly helps to reduce or keep away taxol-induced neuropathy. It can be bought online, or probably at a vitamin store. I gave my mom 30 grams a day divided in 3 doses, mixed with water. I had her swish her mouth with it too as oral side effects are common too.

2.) Protein shakes - I gave my mom 2 shakes a day, totaling between 45-60 grams of protein depending on the brand. I think protein is a good way to get nutrition, and keep your body in better shape to deal with the harsh drugs. I still give her two shakes a day because she's gotten so accustomed to it. I use whey protein powder, but premade shakes should work too. One a day shoud be fine too. I just tend to go overkill.

I wish you and your mom all the best in getting through this, and if you have any questions please don't hesitate to ask.

-Michael

[jmackmom]

I have no experience with taxol. I chose to go single agent Carboplatin after reading three studies that said that single agent Carboplatin was just as effective as the combo with taxol I did not lose one hair or nails either. there are still side effects but taxol is the most toxic of course everyone is different , my cancer was 1A but high grade 3 cells

I wholeheartedly agree about the lL-Glutamine. Most wont tell you about it. It is a preventative and does NOT work if you wait until after you develop the neuropathy.

Hydrate hydrate hydrate. If you have a pet be very conscious of keeping the toilet lid closed in case they drink from the toilet and ingest the drugs.

Do not wait until you feel nauseous to take the meds.

My Oncologist insisted that Miralax was much better than a stool softener.

Walking is important when you are able.

One last good tip if you need a shot of Neuogen for prevention of infection and beefing up your white cells, take a 10 mg Claritin you won’t get any bone pain as a side effect works every time

Of course when I say ‘you’ I mean your mom.

This will pass. Best

Susan

[Maus123 in reply to jmackmom]

Easier than applying and changing cold gel packs, that's for sure. Xx. Maus

[LoyalVet]

Take some snacks with you when she is infused. I packed a backpack. In it, I put a travel pillow, some light snacks ( for her and you) in a small lunch cooler with an ice block (applesauce, Jolly Rancher no-sugar hard candies to keep her mouth moist, a small sandwich (I took 1/2), bottled water, ginger ale, ginger candies, etc.), some puzzle books and the like to keep her and you occupied. You'll adapt it once you know what she'll eat. She needs to wear something comfortable. Should have a v-neck so they can access her port if she has one. Once the first week passes, she will start to feel better. Take her to the mall so she can walk some.

[kat98116]

It's all been said and very well! My daughter was there for me during frontline and I couldn't have done it without her. How wonderful that you can be there for yours. The only thing I would add is that it takes time to see how your mom will react. It may take a few cycles to figure out how to manage the side effects. Keep trying things until something works! My biggest problem was constipation, especially from the carbo. My ultimate solution was Magnesium Oxide (a supplement, make sure to do the oxide form) because I could not stand the chemical laxatives. Take care and no question is too small!

[Nstober]

Hi as soon as she can, she needs to move around. My sister felt lousy first thing waking up but walking and moving around made her feel so much better. She needs to drink lots of liquids to flush things through her body. She may feel a little dizzy or breathless for a little while. If her counts are down, then they will give her a neulasta shot. We are just over the bridge in Jersey. Wishing you and your mom all the best. Nancy

[Artgreen]

One nurse told me to wear dark nail varnish as there was some evidence that it helped preserve the nails. I take a crossword book and write in a journal on my combined carbo/taxol days . The first one took 8 hours with a picc line but now only 5.5 hours. My weekly taxol takes about 4 hours (today)!

Definitely try to walk a mile or so a day if possible it seems to strengthen me. I’m usually tired on the day itself and I’m paranoid about picking up infections so I carry a mask in case anyone coughs near me if I’m in the hospital, or a scarf over my face. I wear gloves too. But managed to catch cellulitis off my own body ( I think my onc was trying to relax me when she said you can’t protect yourself from everything!).

I dong let the cat too close anymore as she licks everything and everyone. I wash my hands a lot . At the chemo I moisturise them too. I’m on 5 of 18 today and the hair is really thinning now. I had it cut short and my husband will shave it when looks scruffy. Scarves bandanas and soft warm hats are a must.

Good luck today to you both

Love

Alex xx