I’ve read about some but want to get some information from real life experiences.
I searched that cool gloves and slippers will help with neuropathy, any comments?
my protocol is BRAJTTW, anyone with the same ?
Hello and welcome. Congrats on starting treatment next week.
Yes to having cool gloves on hands/feet, it will help prevent peripheral neuropathy.
I was diagnosed with IDC, ER+ and HER2+ in 2018. My chemo treatment was Herceptin (Trastuzumab) and Docetaxal, with 2 rounds of Carboplatin and 1 round of Cyclophosphamide. Both “C” drugs were discontinued due to serious side effects. I requested bags of ice from my chemo nurse for my hands/feet during the docetaxal infusion as it can cause nerve damage. I also sipped on cool water to avoid mouth sores. When the sores showed up in my nose I used diaper rash cream (as recommended on a UK chat site), dabbed on with a Q-tip to ease and heal my sore nose.
Get some head coverings because your head will be cold once your hair is gone. I had a rainbow of colors and wore them proudly with a set of long, dangly earrings.
Bring a book or some sort of reading material, dress in layers (I found the chemo cold and the room cold as well), bring a blanket to cover your lap, bring snacks and a water bottle of cool/cold water.
i did 4 rounds of taxotere, cyclophosphamide and am currently on round 16 of Herceptin.
Hopefully you were given info on the chemo drugs and the drugs taken the day before, during and one day after. I suggest getting a binder for all your paperwork.
my biggest issues were neuropathy, mouth sores, constipation and terrible chemo brain. My neuropathy which was mostly in my hands was bad enough that 2 rounds of taxotere were decreased by 15%.
I suggest writing a list of side effects you experience and dates. The clinic teams really do care and can make drug changes or additions based on side effects. Be very honest with them and don’t try to be stoic.
Drink lots of water and small frequent meals will help.
I hope this helps
My chemo regime was Adriamycin, cyclophosphamide and Paclitaxel. I had the first two for four doses 2 weeks apart then four doses of Paclitaxel 2 weeks apart.
I found it really hard to focus on reading during chemo so I took a puzzle book and pen, and my phone was loaded with podcasts and audiobooks to while away the time. I took slippers, snacks, my favourite tea, hand cream and lip salve (hospitals are always so dry). I slept through my Paclitaxel chemo due to the Benadryl pre-med.
I didn’t ice (I didn’t know about it) and I do have mild neuropathy in my hands and feet.
Before chemo started I cleaned my house from top to bottom because I doubted I’d have energy for it for a while. I also stocked up on healthy soups, ice pops, and a few meals in the freezer. I joined our library and took out books but also used it for audiobooks to download.
I second @Runner Girl advice to think about head coverings. I had berets and caps from www.headcovers.com beanies, buffs and l learned to wrap scarves using tutorials from www.wrapunzel.com as the weather warmed up I had a henna tattoo which I loved.
The antiemetics are excellent at their job - do take them. They do mess with your system though. After each chemo the ondansetron made me tired, but the dexamethasone had me wakeful and hungry. I had constipation and diarrhea as well as headaches and indigestion for the first two. Joint pain from Paclitaxel. Talk to your team about any side effects - they need to know in case it’s important, but they can also help with the side effects by adjusting your meds.
I needed a ride to and from chemo - there is no way I could have driven home. I needed a nap when I got home too. In fact daily naps through chemo were essential.
I know the first session is anxiety causing, but you will get into the routine and it really isn’t as bad as we think it will be.
best wishes, Essjay
@Hoi do you have a port? I didn't have one for my 16 rounds of chemo. If you don't have one I suggest keeping hydrated the day before to keep your veins plump. No caffeine the day of. I brought my coffee with me and then sipped on it after they found a vein. Then hydrate the day of and after to flush the chemo out.
@Hoi watch the neuropathy as it can be permanent. Any sign of it advise your chemo nurse and they may reduce your dose to ensure it doesn't get worse. I did 4 rounds of paclitaxel every 3 weeks with cancer 1.0 and was fine. I did 25 rounds of weekly paclitaxel with cancer 2.0 (metastatic her2+) and DO have permanent neuropathy mostly in my feet. It doesn't impact my day to day but my yoga balance postures are terrible. Feels like I have a rolled up sock under the ball of me feet. Long walks make it worse but I still do them.
@Hoi Hello Hoi - Yes, after surgery last year, I completed the BRAJTTW protocol, and then went on to radiation, and now on daily AI and 2x annual zometa IV. I'm happy to share that BRAJTTW wasn't nearly as bad as I was anticipating. For me, the paclitaxel caussed minor tummy upset, headache, neuropathy and some skin agitation, but overall quite manageable. I did not ice my feet or hands during infusions (but I've heard from others that can be quite helpful). Instead, I iced my head aka cold capping which doesn't help with neuropathy, just hair conservation. On IV days, I'd bring in tea and water, and didn't have much appetite right after and felt a bit droopy, but otherwise fared out ok. If there's anything specific that you'd like to know, just let me know. Take good care.
I shaved my head for round one and two. The thought of finding clumps of hair on my pillow or in the shower was something I wanted to deal with. The oncology department has the cold caps, gloves etc for you. I didn’t use the cold cap, just the ones for my hands and feet.
still have neuropathy in my toes and slightly on my my fingertips but can manage just fine day to day.
I personally encourage prayer time before during and after. God bless!
Hello Hoi - I completed BRAJTTW protocol last year. I opted to use Penguin Cold Caps during chemo. Not sure where you are getting treatment, but I've heard some hospitals also have the I thinned out for sure, but maintained 75-80% of the hair on my head. Meanwhile, I lost all hair everywhere else! We all react differently to chemo, but I think the cold caps are the reason that I preserved most of the hair on my head. By the way, I also opted for port, after unhappy vein experience - the port made things sooooo much easier. Let me know if you have any Qs. Take good care.