July 2020 chemo club
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kukalona...I did a full fast until Chemo was over. 48 hours total to chemo with water and some green tea only. Then after chemo today I did fasting mimicking by having the coffee with cream and tonight some bone broth. I will break the fast tomorrow at lunch so about 72 hours. I know I stayed under 500 calories which I think is required for fasting mimicking diets. I have done many 3 day fast during the last 2 years when I thought I could prevent a reoccurrence naturally. I now believe that was to prepare me for for this bump in the road. It is funny how the mind response to prolonged fasting. As a Catholic I offer up any hunger I would have for someone who is need of prayers. But hunger is really not an issue. I try to stay busy so I get lots done. I look at it as a pre-side effect..."It much better to choose not to eat than not be able to eat" quote from a gal on you tube. Here is the link. https://youtu.be/x7jxjhWeTLE I have fun planning food that I will eat when I am done fasting. If the Big D stay away a Dairy Queen cheesecake blizzard is in my very near future...like Saturday!🍦🍦🍦
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Nottoday, welcome!
Brittonkb, hi again! Glad to read you are feeling ok.
Melbo, thinking about you as you go for the port placement and first infusion today.
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Trynryan, sorry you are having a rough time. I hope today and the weekend are better for you.
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Smichaels11, a 75% reduction in your tumor! I am excited for you. That is great!
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Susan, I know oral hygiene is important, especially during chemo, but try using waxed floss or no flossing for a day or two while your gums are sensitive to see if that makes a difference. Also, I used an extra soft children's toothbrush and that was softer than the adult toothbrush.
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Iamloved, that's exciting that the oncologist could not feel your tumor. Yes, thank God!
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kukalona, the reason some of us have neoadjuvent chemo is because of HER2+. Since its an aggressive type, the current treatment standard is to treat with chemo first to prevent spread and shrink tumors before surgery.
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Kukalona, the two oncologists I saw after diagnosis said the same as Smichaels11 in her post. Also, they said they can assess the effectiveness of the treatment if the tumour is still there to measure so they know to change treatments if it's not working or, if there is a recurrence in the future, they know what worked/did not work previously.
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Mtspacekace, glad to read the hydration was helpful. Hope the taste of everything is better soon. Thank you for telling us about the cookbook. The curried chicken salad sounds great.
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Mtspacekace, the taste issue is my biggest foe at the moment. The other side effects I can deal with, but not being able to enjoy eating is unbearable for me sometimes. I didn't get any mouth sores, but my tongue felt like it was burned. For the first 2 weeks after each infusion I barely eat because nothing tastes good. Then I find myself (like right now) eating anything and everything in sight on week 3, lol! Has anyone been able to find something that works? Saltwater/baking soda rinse helps a little, but not enough to make a huge difference. I wonder if there is a medication or prescription mouth rinse out there that could help?
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Good morning. Day 8 here. MO visit today went well. I'm feeling pretty much myself.The plan is to move forward with #2 on 8/21, keeping all the premeds and dosages the same as #1. We are going to skip Neulasta on number two also, assuming I guess, that I don't have any issues that occur between now and then. Was told at this point, just watch out for fever and call for any temp in triple digits. He told me it's not likely to get worse from here on the remaining infusions, that on #2 I should do exactly what I did the first time (compazine the same number of days, etc). My only concern is an elevated ALP that has me worried. He says ALP is very non-specific but it's something we need to watch. Scares me.
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My port is placed and I have had my first round of chemo. It was a really long day, but none of it was particularly painful or icky feeling. Right this minute I actually feel pretty good -- I expect it's the Akynseo and dexamethasone. They will wear off eventually and then we'll see what happens.
The only side effects I noticed during infusions were very, very mild tingling in my fingers and hands when they gave me the Perjeta and Herceptin -- in both cases it went away after a few minutes. (I'm not doing icing at this point, I might start later, but I'm trying to practice the "less is more" philosophy for now.) I definitely had a strange flavor in my mouth for both the Taxofere and Carboplatin, but it was intermittent and bearable.
The mysterious part of my day involved my port. They told me the surgery would take 30 minutes and would only involve twilight anesthesia. When I woke up it had been 60 minutes, my hair was crusted and gross with something, and my throat hurt when I talked or swallowed. The recovery nurse couldn't tell me if they had intubated me though and had no clue what was in my hair. She did mention however that they had to "jab" me a few times before they could get the port placed. The initial post op notes I saw only listed "poor venous access" in the problem area. I suspect I will never know what actually happened.
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Melbo, I'm glad things went well with chemo. That is quite scary about your port placement. I was awake but heavily medicated for mine. How could the nurse not tell you if you were intebated or not? That seems like a very big deal!
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I know! But I was in pain and they offered me fentanyl and then it didn't seem to matter so much.... Plus I really wanted to get started with the chemo so that I could start killing the cancer.
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Melbo, glad to read your first infusion is over and they gave you fentanyl for the pain after the port placement. The next time you are there, you are allowed to ask to read your chart to know the details re: the port placement.
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Wow, hair loss... I thought it would happen as a slow shedding over several days, but it was a sudden purge this morning while I was in the shower. I knew it was going to happen, but not at that speed!
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@shar2020 @smichaels11 Thanks for explaining the Her2+ thing. It totally makes sense now and I'm happy to hear so many of us are having a great response to Chemo as neoadjuvant therapy.
@Shar2020 I hear you about the hair, I'm cold capping, but still the shedding I did have was very sudden and a ton of it. Stay strong about it. It's only temporary and your hair will grow back. Sending you good energy.
Here's a thought - since so many of us are struggling with taste and food being funky. Let's make a list of foods that taste ok or are at least well tolerated. Here are mine - Avocado toast, chicken soup, baby bell cheese, nutella, potato chips, eggs (done any way), cucumbers, and my recent craving that proved great - Oreo Mcflurry!
How about you girls?
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melbo: When I had my port placed, I was completely knocked out as well...no twilight for me, which I am happy about. It was scary enough having to lay down on the table myself and looking up and seeing the lights! They did have some sort of breathing tube in me...when I woke up, I told the nurse I had cotton mouth and my throat was sore and that is what she told me. She did not say intubated, but maybe I was.
This is the cookbook I got, and it is quite full of info. One thing I read was about seasoning things so that they taste better to us...and maple syrup was one thing suggested...so for breakfast I tried an Eggo waffle, with maple syrup and I some fresh strawberries I cut up and added sugar to last night. It was heavenly. The best meal I have ate in 10 days. Tomorrow I’m going to add some eggs.
Cheers ladies! Hope everyone has a wonderful weekend
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Thank you, Kukalona. I feel ok about the hair loss, although losing so much of it at once was unexpected and surprising. That's unfortunate you lost a lot despite the cold capping.
Regarding the list of foods that were ok or well tolerated:
The only food that did not taste like metal was yellow wax beans so I ate a lot of them!
Well tolerated, although they tasted like metal: Greek yogurt, bananas, chia pudding, mozzarella, oatmeal, cauliflower, lentils, salmon, tuna, almond milk, and soft ginger cookies.
Mtspacekace told us about a great cookbook, The Cancer Fighting Cookbook, and the author has a lot of great recipes at her website: https://www.rebeccakatz.com
Thank you, Mtspacekace, for telling us about the book.
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During my worst days, the only foods that taste somewhat like they are supposed to are pickles and olives. I ate JARS of them, lol! Hard boiled eggs with salt were pretty good too, although they didn't taste 100% right. I also had a hankering for McDonald's breakfast burritos with hot sauce 😋
In order to keep my protein intake up while I wasn't eating much, I made smoothies with almond milk, frozen fruit, and protein powder. I also bought a pack of Ensure, but I haven't needed them yet.
Shar, the hair loss is definitely jarring. When mine started it happened quickly. My scalp felt tingly and I knew it was starting. No matter how many times I ran my fingers through my hair, a chunk would come out. That is when I buzzed it. I was afraid if I took a shower I would come out with just small chunks left on my head.
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Smichaels11, that was how it happened with my hair yesterday morning. I was in the shower and so much of it suddenly fell out that I started to slip on it because it was wet. You were smart to shave your hair before it reached that point.
Regarding the Ensure: There is an orange cream flavour that is delicious partly frozen and shaken in the bottle like a milkshake. Feels soothing on the mouth, too, if there are any sores.
Wishing everyone a pleasant weekend.
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Happy Saturday ladies! Well I'm on Day 6, off any anti-nausea meds for > 24 hours and still no major SEs. I'll count my blessings even if the next go round proves much more difficult!
Regarding lumpectomy vs mastectomy: I chose lumpectomy primarily because my BS and 2nd opinion BS both indicated I was a good candidate for it and rate of survival about the same as mastectomy. I also have a good friend who had a mastectomy 10 years ago - she let me know she would have had a lumpectomy if an option (wasn't an option for her based on location of the tumor). She said that unfortunately you worry about recurrence regardless of which option you choose. I also started using a MO and BS at the Stefanie Spielman Breast Cancer center (at Ohio State University) after my initial surgery as a result of tumor being significantly larger than MRI showed and LN involvement found during surgery. Despite that team of doctors having different treatment recommendations than my local team, I have to say the one thing they ALL agreed upon was the lumpectomy vs mastectomy route. They treat me as a 'young' patient, but I also realize many on this thread are quite a bit younger than me. I can't say that I would have necessarily made the same decision if I were younger. While it is such a hard decision, you have to go with whatever makes you feel most comfortable.
My OSU doctors have recommended to me to try Glutamine Powder to prevent neuropathy when I start Taxol. Has anyone here heard of this or know anyone who has tried it? Sounds much better to me than the ice packs but haven't heard of anyone else trying it.
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Happy Saturday to all! As far as foods go for me Egg salad has to top the list. Diet cranberry juice for my drink when water tastes "thick". Cracker bread with havarti cheese melted. Wild rice and chicken soup. Am going to a restaurant tonight that has the most amazing bread pudding can't wait! And finally Dairy Queen New York cheesecake blizzard oh my yum!! Long gone are my keto days😔
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Brittonkb, day six and no major side effects after your first infusion! I am happy to read you feel well.
Regarding your question about using glutamine to prevent neuropathy: I want to avoid taxane-induced neuropathy, but I was confused about the conflicting online information regarding the safety of glutamine with regards to cancer. Some sources recommend it to prevent neuropathy during chemo while others refer to glutamine inhibitors as a potential treatment for some types of cancer. I am not a researcher or scientist so I can’t properly evaluate or interpret these sources and articles which left me confused on this topic. Here’s one online article:
https://www.mskcc.org/news/beyond-sugar-what-cancer-cells-need-grow
I would say to go with the recommendation of your oncologists over an online source or start the Taxol without glutamine and then re-assess with input from your oncology team at the first sign of neuropathy.
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smichaels11- (and everyone else having mouth rawness). I have been using Closys mouth rinse which seems to be helping.
Looks like lots of us are going through all these symptoms together
My hair loss started yesterday. I will be shaving soon but can’t get myself to do it. It’s not falling out a ton but if I give it a small tug it definitely comes out so it’s just a matter of time. I’m on day 15 post first cycle and all of a sudden the diarrhea is back
For those struggling with water taste- I found a product called water drops (made with stevia) and it’s a game changer for me. I bought a 4 pack off amazon. For some reason Hawaiian sweet rolls have been another go to when nothing else sounds good. I already go back for my 2nd treatment next Friday and it came quicker than I thought.
As far as the decisions with surgery- I will have to do a double mastectomy due to my gene mutation.Anyone else staying employed during treatment?
Hope everyone’s Saturday is going well.
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Shar - Thanks for sharing the article... I’ll definitely take a look. I wish we could just wave a magic wand and have all the answers! It was actually my oncologist at the James Cancer Center who recommended the powder. He is my lead oncologist but I also have a local MO where I receive my infusions. I still have time but will definitely let you all know how it works out.
Nottoday - I am employed but have worked remotely since Covid hit. I did a lot of my work remotely even before Covid so not too much of a change. I definitely found it hard to concentrate with fogginess last week. I spent some time yesterday checkI got some emails I sent to make sure I didn’t sound drunk and that I sent to the right people!
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brittonkb, that is too funny about the work emails! I have been working from home due to COVID. My boss is allowing me to continue working from home until after chemo and surgery recovery, which will probably take me into mid-December. During my brain fog days I also feel like I'm sending drunk emails, lol! I have a lot of staff that reports to me, and I feel so badly because I have them repeat themselves and clarify things so many times. I'm very thankful to work for a great company with excellent health insurance. I feel so badly for those who work in less than ideal situations or don't have insurance. That would be terrifying.
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Day 4 of my first chemo cycle and I believe the Perjeta-induced diarrhea has begun. Other than the fatigue, the diarrhea is the worst and is the one symptom I am the most concerned about. Everything else has kind of come and gone: heart burn, a sore on my tongue, funky tastes, and my fingers feeling clumsy. I'll notice one of the symptoms for a bit, and then 20 minutes later it will be gone. Still no nausea, even though I am trying to be hyper-aware of it starting so I can take one of my pills to stop it. Granted, based on what you guys have posted about your experiences with TCHP -- day 4 seems to be when the worst side effects kick in. I was surprised to feel pretty decent for days 1, 2, and 3.
So far I have managed to walk every day -- just 1.5 miles and nothing super fast, but at least it's something.
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Melbo, I’m sorry you aren’t feeling great. Don’t forget there are options and to reach out to your team if Imodium isn’t cutting it! Imodium was all I needed to control things in terms of dehydration but my MO also added an rx called Bentyl, to try during my next round, which is supposed to help with the painful stomach cramping. She said it can be great but it’s hit or miss in terms of effectiveness; I’m hoping it helps and am glad I have something to try!
Has anyone had the experience of taking Claritin for the Neulasta and then NOT taking Claritin? I had asthma during my first round, which is usually well controlled just with Zyrtec. Since I can’t take Zyrtec and Claritin, my MO told me to just skip the Claritin and take tramadol if needed. My legs were achy but not unbearable during my first round, but I’m worried I’ll be miserable this round
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This is my first post here ever. I have been a lurker for the last few months. But, I just started Chemo at the end of July. I will be having my 3rd round this Thursday. I have had no symptoms at all. I feel pretty good so far. I keep waiting for the bottom to fall out. Unfortunately, I do have it in my liver, too. I was not expecting that but I will fight it like everything else. I believe I am considered the triple negative because one of mine was a low postive so they are treating me as a triple negative. Please, forgive me, I am not sure of all the correct terminology for everything. You ladies, have given me such hope from your stories and your motivation to help yourself and others.
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