July 2020 chemo club

Shar2020

Iamloved, oh, a banana and a caramel roll from your husband. Nice!

I hear you about the keto. I did vegetarian keto previously, but now I plan to consume whatever is going to get me through chemo with the least amount of g.i. problems. I bought high carb foods, such as bananas, oatmeal, yogurt, Gatorade, and Ensure, in addition to my usual nuts, fish, chia, eggs, etc.

Dubhain

My treatment starts July 31st. Haven't gotten the port yet. My oncologist mentioned immunotherapy combined with chemo for my triple negative breast cancer. It's a phase 3 trial with mature data published in the New England Journal of Medicine and resulted in a 65 percent pathological complete response. With this I would only need infusions once every 3 weeks for 12 weeks followed by surgery. I'm having the double mastectomy due to family history, being triple negative, and my BRCA2 result. Turns out though my insurance won't cover it. He believes it's because the FDA hasn't yet proven this combo prolongs life any more than traditional chemo. Now I will be getting 12 weekly infusions of Paraplatin and Taxol. Then a total of 4 infusions every other week of Doxorubicin and Cyclophosphamide. Does anyone have experience with these chemo regimens?

BlusteryDay

Dubhain, I'm TN and I just had my first AC (Doxorubicin/Cyclo) aka: Adriamycin/Cytoxan infusion on Friday. It was my first dose dense AC of 4 (every other week) and then I'll be doing 4 dose dense Taxol, due to the fact that I'm a 5 hour round trip from my infusion center. I don't have my genetic testing back yet, but had a lumpectomy back in May, so will be doing rads after chemo.

For me, the first AC infusion wasn't terrible - but I ate ice like my life depended on it, to hopefully ward off mouth sores. I was also on a round-the-clock anti-nausea med routine for 4 days to keep the nausea and vomiting at bay. Now, I'm dealing with the other side of the spectrum...constipation. Ugh.

I also had neulasta the day after my infusion, and started Claritin two days prior and continued for 4 days after and had Tramadol for breakthrough bone pain, which was effective.

Today is day 6 for me and I haven't taken any meds today. But I'm not holding my breath...it seems each day is different LOL!

Dubhain

Blusteryday, I am so not looking forward to this. Since I haven't started treatment yet, this cancer still doesn't seem real. It's like I'm just playing a part. That is SO going to change next week. I chose Fridays so I can recover as much as possible on the weekend, and hopefully go back to work that following week until the next treatment, and so on. Am I kidding myself? I'm sure everyone has different extremes of the side effects?

mtspacekace

Day 16 and I did the shave. I pulled a chihuahua out of the drain after my shower this morning. My hairdresser is amazing and came over after work today to do the dirty deed. I feel like Britney Spears circa 2007. I also had my blood work done and met with my MO today. Everything looked great he said! I’m good for round 2 on Tuesday! Also, I feel great. Even my taste buds are coming back a bit. Other than a little headache, which is probably from dehydration...I feel like normal! So glad I get a few good days before I go back to chemo hangover hell!

Shar2020

Dubhain best wishes as you go through your treatments.

Mtspacekace, glad to read you feel like normal.

BlusteryDay, that's a long round trip on infusion days!

Wishing everyone a pleasant day. My first infusion is today at 8 am.

Smichaels11

mtspacekace, I laughed when you mentioned Britney, lol, I did the same thing when I shaved mine! How do you feel? Although I'm not thrilled about a shaved head, I have to admit that showering is pretty damn easy now! I picked up a tip I read on another thread about using a sticky lint roller. It has really helped with the little hairs coming out after the buzz cut. I'm about 1/3 bald right now and looking a little silly, but I don't want to shave it clean because I heard that can cause ingrown hairs.

Sharon, good luck today! I hope it is blissfully uneventful and restful for you.

Dubhain, I don't think it's unreasonable to return to work depending on what you do. If your job is more physical it may be more challenging. I work an office job I am lucky enough to do from home right now, so its a little easier for me. I have the bathroom close and can take a quick rest when I need it. My first infusion I didn't know what to expect so I took a few days off on week 2 when the side effects started to hit, but I probably could have worked through them. Most of it for me was mental/emotional so I'm hoping this time I will handle it better. Good luck, you will be just fine! You have us all in your pocket if you need it.

BlusteryDay

Dubhain, I think doing infusions on Friday made it easier to recover over the weekend and working would be "do-able". With AC, the typical pattern is: Day 1 is infusion, Days 2-3 (Saturday and Sunday) are round the clock anti-nausea meds and fatigue, Day 4-5 improving energy, Day 7-10 is nadir and lowest neutrophils/immunity, possible fatigue - just take it easy (should fall on the weekend with our Friday infusions) then improvement to Day 13. It will be cyclical. I did experience some crazy brain fog on Monday after my infusion, but that could've been attributed to the Tramadol I took for bone pain. I wish I could've taken Tylenol or ibuprofen, but was told explicitly not to because it could mask a fever.

I totally understand what you mean about not feeling like it's real, or even that it's "that big of a deal", until I got my port. I even mentioned several times, to my husband, "What if I don't go through with it!? I feel FINE"....knowing full well, that my recurrence percentage was >39% within 5 years without chemo. I'm pretty sure my husband thinks I have lost my mind, by this point LOL!

The one thing I'm glad I did before everything got crazy, was to take time and enjoy my "healthy" body and life. I even managed to forget I had cancer for a whole weekend...it was a lovely break. Walk when you can, if you have a place to stroll...just enjoy life. It isn't terrible after you start infusions, by any means, but just make it a point to enjoy life.

BlusteryDay

Sharon2020 - Good Luck today! I hope all goes well with your first infusion!

kukalona

Hi Everyone,

Today is day 14 (out of 21 day cycle). I feel very lucky because for the past 4 days I'm feeling pretty normal. Was even able to do 45 minutes of a dance lesson (via youtube) and felt great about it.

Yesterday I started to shed some hair. Surprisingly not from my head (wink wink). I am cold-capping during my infusion but I still expect to shed 30-70% of my hair, and I assume it will start any day now. I don't want to shave my head, because the whole point of cold capping is to try and keep the hair. I really hope I don't end up looking like the Gollum from Lord of the rings. I'm dreading the shed, and there's no way of knowing how well the cold capping works until the shedding slows down.

Iamloved - So sorry to head about how bad your GI issues were. I hope it's mostly all behind you now. Definitely talk to your MO about stronger anti-diarrhea meds. My MO explained that Taxotere makes the bowels hyper-active and that's what causes cramps and diarrhea, and she mentioned that there are prescription meds for those who need them.

Smicheals11 - You look great, your wig suits you and looks like real hair. If I get to a point where I need a head cover, I think I'm going to opt for scarves. I've been looking at youtube and pinterest tutorials and practicing turban wraps and other styles.

Dubhain - welcome to the best club you never wanted to be a part of Can you share what immunotherapy you were offered? I'm a scientist working in the field of immuno-oncology. Also, any clinical trial treatment should be free. To the best of my knowledge, companies are not allowed to charge patients for any pre-approval drugs or treatments. If there is a cost associated with the treatment there are also many patient advocacy groups who can try to help as well as programs for "compassion use" which provide the treatment for patients out of the trial, at no cost.
Regarding Friday schedule - it really depends on your drug cocktail. I'm on TC and get my infusion on Fridays. I feel ok after the infusion, until Sunday night, Then I felt crappy the entire week and only did 1-2 hours of work a day. Then got better during the weekend and was able to work normally starting on the second week. So for me, Friday doesn't help much with work...

Good luck to all who are having their 2nd round these days. Hang in there!

Shar2020

Thank you, BlusteryDay and Smichaels11. The infusion went well and everything was perfect from start to finish during my 8 hours at the hospital today.

However, I know from reading everyone's messages not to assume the upcoming days will be as easy as the infusion.

Thank you to everyone for sharing your experiences.

Dubhain

Blusterday, thanks to you and everyone for the encouragement and support. I get my port on Monday, and required to take a covid test tomorrow at the same location as a drive up. I didn't realize I would require a ride home due to the sedation. Luckily a friend of mine is off work that day. I'm in Arizona where it's friggin hot as heck. I'm trying to motivate myself to do some exercises at home, though I prefer hiking.

Kukalona, I think the drugs in the study were Taxol and Pembrolizumab. I wasn't part of the trial. My MO mentioned learning about it at a recent conference.

Also, is a patient navigator suppose to contact me regarding how to prepare for my 1st infusion, diet, recommendations on wig stores, etc? I had read that at one time the American Cancer Society offered free wigs to cancer patients, but I gave them a call the other day and they said because of the virus supply is way down so that's not an option. I also read some places will accept insurance for wigs in head coverings. I'd like to also get a hat with the hair attached for convenience and wigs that will hold up to breezes.

Shar2020

Kukalona, glad to read that you have been feeling well for four days and did a 45-minute YouTube dance class. That’s great!

mtspacekace

Smichaels11... I also read about the lint roller!! I’ve rollered a few times today, because the neck of my t-shirt was covered in hair! I can’t believe how much has come out, and how much is still there. The sides are still sticking pretty good, the top looks like a mangy dog. I can’t wait for it to be bald and shiny Mr Clean!

Shar2020

Wishing everyone the best this weekend. Will any of you spend time in your gardens? They sound lovely!

Shar2020

And for those of you talking about the lint roller, thank you for telling us about it. I will be sure to buy one.

AnnaTheBrave

Hello, all! I had my first infusion yesterday (TCHP) and it went fine. Mild cramps during Taxotere but other than that I felt fine. Slept well last night and felt a little shaky this morning but have been able to graze on healthy foods (rice cakes, peanut butter, banana) and drink a ton of water. On and off stomach cramps but nothing bad and nothing to “show” for it! Ha! Sorry, gross.

Going to pick up my wig now, then back to infusion center for Neulasta self-administration training. I haven’t felt nauseated but will pack my zofran in my purse in case it hits while I’m out.

My wonderful nurse, who was just an absolute font of competence and wisdom, said to expect a low on days four and five (Sunday and Monday), so we’ll see how that goes.

Just feeling so grateful that the infusion itself wasn’t as scary or uncomfortable as I worried it would be! And grateful for this virtual community’s wisdom and for my sister for bringing me bananas and entertaining my kids today! Wishing you all peace and sunshine (at comfortable temperatures!) for the weekend!

Smichaels11

I am on day 3 (counting infusion as day 1) of infusion #2. Feeling okay, pretty much hitting the same SEs as last time right on target. I'm hoping I can offset more of them faster now that I know what is coming... fingers crossed! I'm just ready for all of this to be o-v-e-r with. 1/3 of the way done!

My poor hair, what is left of the buzz cut, is looking mangy as well! I still rip off my wig as soon I can, though, lol!

I've been working on my garden - So many cucumbers are ready to go! Unfortunately they are aggravating my heartburn which is a bummer so they may have to pickle them so they don't go to waste. I really need to get working on exercising and walking more. Finding the energy after work is the hardest part, so I need to make time.

Shar2020

AnnaTheBrave, glad to read that your first infusion was fine. Good the cramping was mild. Will your next infusion be in three weeks? If so, we are on the same schedule.

How was the Neulasta self-administration training? I had it today for Lapelga.

Wishing you a pleasant weekend.

Shar2020

Smichaels11, you are one/third of the way done! Yay!

Your garden with the cucumbers sounds lovely. Unfortunate they aggravate your heartburn. Pickling them sounds like a great idea so you can enjoy them when this is over.

Wishing you a pleasant weekend.

Smichaels11

Anyone considering clean shaving what hair is left? I read somewhere not to shave it due to risk of ingrown hair, but my poor head looks awful! I think I could cope a bit better if it was shaved clean and looked less "sickly." Thoughts?

AnnaTheBrave

Sharon2020, I am on the every-three-weeks schedule too. Next infusion is 8/13. Are you doing TCHP or just TCH? (Looking at your signature)

Neulasta (which was actually Udenyca, the bioidentical that my insurance covers) training was fine! Had to get over a little bit of the willies but honestly couldn’t even feel the needle. Having a little pooch from baby #2 probably helped! Thanks, kid! Glad I trained to self administer, because I’m kind of leaning into being proud of myself for handling all this crap and because honestly I’d rather have myself to blame than my husband if something went wrong or if it hurt! It is very easy. Glad next time i won’t have to return for an appt and can just do it at home.

Today, legs are achy and I had some asthma this morning, but I think that’s from having to stop Zyrtec so I could take Claritin for the bone pain. Tired but can’t nap (steroids, I guess. But appetite is good. Food starting to taste a little weird, but not prohibitively. Just waiting for the crash tomorrow and Monday.

SMichaels, with regard to clean shaving, I do think you run the risk of getting some bumps and nicks and itchy spots and it might just make you more uncomfortable for longer, but I have sensitive skin so that might not apply to you. Do you have a soft cap to sleep in? My friend said it was great throughout but especially during the mangy stage bc it’ll keep the short shedding hairs contained overnight so you don’t have to wash your sheets every single day, if that might be helpful. I think of you and your kiddo often! My daughter just turned five!

Iamloved

Good evening everyone. What a wonderful weekend! I am in awe at this group's attitude towards which is without a doubt a very low point in all our lives. I am back to life after days 6 through 11 spent in 3 places, couch bed bathroom. The big D still dominates but I was fortunate to have spent the last 2 days lakeside with our granddaughters. They are great therapy!! I am patiently waiting for my hair to begin to fall out. I grab chunks and check throughout the day. I know round 2 is still 10 days away but I am planning my fast already. I let myself eat this past week whatever tasted ok. I am extremely sensitive to salt. Went from basically a keto diet to pass the bread please. That stops this week! Time to rebuild with bone broth, protein and some good garden veggies!! Wishing everyone the absolute best week of our journey. I do love reading about everyone's story. It helps me realize I am not alone!!! 🤗🙏💓

Smichaels11

Anna, thank you for thinking of me! My little guy just had his last immunizations to start school so he had to stay the weekend at his grandmas house per the oncologist but he comes home today.

It's interesting you give the neulasta shot to yourself. My center actually tapes a devise to either your stomach or arm (I choose stomach) and it automatically goes off after 24 hours and then you just peel it off and throw it away.

Iamloved, I'm glad you're feeling better and getting back on track! I'm on the downslope starting to feel the yucky mouth feel and fatigue, but I'm trying my best to stay ahead of it this time. I hope the fasting continues to go well for you. My premed steroid indicates to take with food so I'm not sure its something I would be able to do, but it sounds interesting!

Has anyone purchased their own cold gloves/socks for infusions? The nurses provide bed pans full of ice, lol, but id rather something a bit easier if possible. The ones I've seen online only appear to stay cold for 30 minutes, but taxotere infusions, at least for me, are 1 hour. I'm curious what everyone else is doing.

Oh! And I successfully wore a headscarf in public yesterday to run to the store. I tied it almost like a turban with the bun at the top of my forehead. My SO said it didn't look "cancery" which made me feel good. It was just too damn hot for my wig! To my surprise, noone cared or even gave me a second look. Turns out I'm just not that special

PS, if anyone is experiencing a dry or bloody nose, I have found that Bag Balm (or any Vaseline) put into the nostrils after a spray of saline with a qtip really helps! It also helps with the drips if your nose hair has left the building.

Shar2020

Smichaels11, glad to read your son will be home with you today after a weekend with grandma.

Regarding the ice: I did not use ice gloves/socks during the Taxotere infusion, but the nurses had a closed bag of ice inside an open bag that slid onto my feet/hands like slippers. The closed bag of ice was on top of the hands/feet and nails, and stayed in place for the full hour.

Shar2020

Iamloved, glad to read you had a lakeside visit with your granddaughters. That sounds lovely. Also, glad to read you are starting to feel better after your first infusion. Is infusion number 2 on August 11th?

Shar2020

AnnaTheBrave, that's great your Neulasta injection went well. Did the Claritin help the bone pain? I took one the night before the injection and again the next day two hours before the injection, and there was no pain. The timing was suggested by the hospital pharmacist when I asked him about taking Claritin to prevent bone pain, and he said pain medication would also be prescribed if needed.

Yes, I am receiving Taxotere, Carboplatin and Herceptin. No Perjeta.

Iamloved

Sharon2020... I go back August 6. I am meeting tomorrow with my naturopathic Dr for some therapies that help build white blood cells. I want to ask her if a colonic would be beneficial in clearing up the big D!

Smichaels11…I need to look into a better system than what my center offered. They taped ice packs to my hands and feet. I really didn't feel them get cold.😒 Going to look into a recommendation someone had for Coldest Water ice packs on Amazon.

https://www.amazon.com/Coldest-Reusable-Flexible-S...=sr_1_15?crid=2QDJLE3BNF48R&dchild=1&keywords=coldest+water&qid=1595770305&sprefix=Coldest+%2Caps%2C249&sr=8-15

And yes my nose is dry! Good tip. Thx

AnnaTheBrave

So with regard to the Neulasta on-pro, the thing they tape to you, my insurance company isn’t a big fan. I live like 15 min from the hospital so I’m very lucky that I don’t have to deal with a pain-in-the-ass commute, and I think the on-pro might only be approved in certain cases, at least with my coverage. Glad they’re letting me self administer rather than having to go back though, even though it’s not a long drive.

The Claritin probably helped bc the bone pain hasn’t been terrible. My allergy-induced asthma is acting up though bc I stopped taking Zyrtec so I could take Claritin (which doesn’t seem to help my allergies). And my inhaler (I assume) was giving me heart palpitations (this is an annoying but pre-existing side effect for me, not a new thing) last night, so I was pretty anxious, but a klonipin solved that and all seems fine now.

My MO said she isn’t a fan of icing, which worries me. She says her practice has researched it and they haven’t found strong evidence to recommend it routinely to avoid neuropathy, and she worries about vasoconstriction reducing the medicine’s reach. But I woke up in the middle of last night with my right foot asleep and middle toes totally numb, so I’m concerned. Will def ask her PA about it when I meet her Friday.

Anyone else afraid to mention side effects because they don’t want their dose reduced? I’ll have to talk to the PA about the psychology of my approach too!!

Stardewyeyed

Hello everyone,

This is my first post. I wasn't sure when I was going to start chemo but I found out I'll be starting July 28th. I have my port placement tomorrow morning. I'm 45 with four kids at home: 9, 5, 3, and almost 2. I start with four rounds of A/C and then 12 of taxol. A bit nervous about the general anesthesia in the morning but I'm sure it will be fine and I've heard mostly praise for ports. Really nervous about starting A/C. Anyyone else here on that? So glad to have found this board.