July 2020 chemo club
Comments
-
Is anyone having problems with sore gums? I'm on day 9 from first infusion. i'm using a prescription toothpaste my dentist recommended (prevident -- high fluoride), i'm doing the biotene dry mouth rinse, and the kefir mouth rinse. i'm flossing very gently with unwaxed floss. I don't have any sores or bleeding, but my gums look red and they ache. Maybe is because of citrus in food I am eating? Anyone having this problem? Any ideas?
-
Hey Ladies I want to create a roll call in the initial post so we can all see who is here and when you started treatment and what that treatment is. If you can pm me I will edit the original post as messages come in. If you wish you real first name to be listed please include that. My hope is we can quickly see where everyone is in their treatment and who has a treatment regime like others.
-
Okay ladies here is my experience today at my second infusion. Started off fasting Tuesday around 11 so that I would be at 48 hours when the chemo started. We left at 6:30 a.m. this morning to travel the two and a half hours to the infusion center. We met with my oncologist first and we discussed the Big D issue I've been having. She agreed to take the perjeta out of the mix for this infusion. If it helps with the Big D then we will look at lowering the dose at the next infusion. I have not wanted to jinx my results so I have been trying to avoid the tumor but when she examined me today I told her that I thought it had shrunk. So she did her exam and stopped and went and looked at her computer and came back and said I really can't feel it. Woohoo! She said that this was the most remarkable response she has seen in her practice. Just as a reminder my tumor or tumors were over 7 cm. She kept feeling and was truly amazed. She thanked me for choosing to do the chemotherapy because it appears to be working so well. You can imagine my excitement and my quick thanks to our creator. It certainly made today's treatment almost joyful! I am also following the care oncology protocol which I believe is contributing to the success that appears I may have.
As far as the treatment itself accessing my port was a piece of cake. I could not have had a nicer RN in the infusion center. I finished up with all the pre meds and the Therapies in about 4 hours. I treated myself to an iced Americano with heavy whipping cream at Starbucks. A bit of a fasting mimicking treat. Plan to not eat until tomorrow at lunch time. I want to give my body the best chance to heal itself.
I am too lazy to scroll back to see who recommended the freezing mittens and slippers with ice packs from Amazon. Whoever that was thank you, that was so much easier then my plan. I am going to order more extra ice packs. I did order four extras but because the taxotere runs for an hour, I want one more extra set
Now I wait for SEs. Going to work on hydration and get ready for whatever this round throws at me. I hope this post inspires all to be the STORM In cancer's path!🤗🙏🤗
-
So I've been away for a week and missed soo much in the group!
Welcome to all the new folks, I hope your journey is not too hard and that this group helps.
Regarding the discussion about DMX/BMX or lumpectomy, I totally understand that it is very personal. For me, it wasn't really a hard choice. If I have BRCA or other genetic predisposition, I would have gone with DMX, but with a single tumor, no family history, and being only 40yo, I didn't see a reason to have a larger surgery than needed. I felt like DMX is always an option if anything goes wrong, so I can go that route in the future (hopefully I won't need it).
I'm looking at some of your Dx and wondering why you went with chemo first (neo-antigen therapy) and not with surgery first (chemo as adjuvant therapy). I'm curious to understand the reasoning behind this (it's the cancer biologist in me). My MO and surgeon both recommended lumpectomy first, which is what we did, and I will need another surgery after chemo to remove one bit of unclear margin they found in pathology. So I'm having chemo without an actual tumor to treat, just to kill off any cells circulating in my body or left behind.
@blusteryday I'm sorry about those migraines. Sounds terrible. I don't normally suffer of migraine, but my mom and aunt do, and they told me the way I describe the chemo related headache sound totally like a migraine. Could it be the nuelasta and not the chemo? I wish I had some advice to give.
@susanweinsc I think sore gums are part of the whole dry mouth thing. I have that a little. I've been rinsing twice a day with dry mouth betene mouth wash and it's better than last time. Mostly I feel like I have a film of something all over my mouth. Yuck.
@Iamloved Are you full fasting? because I saw reseach on fasting-mimicing and was considering it, but full fasting sounds too hard.
Here's what I've been upto - Got my 2nd TC on Friday, first 2 days felt pretty normal. Day 3-4 were again the challenging ones, achy, tired, didn't sleep well, stomach getting tender, taste buds bidding me farewell... BUT, I have to say this time it's a lot easier than last time. Hardly any diarrhea, day 5 pain was already a bit better, less mouth issues. I was ready with imodium and more drugs but didn't need them. All I changed from last time was I started taking claritin the day before my fulphila in stead of the day of, and I've started rinsing with dry mouth wash earlier. Not sure if that accounts for all the difference. Now I have no idea what next time will be like, but I have 2 more weeks until then.
Oh, btw - I have one finger tip that has been feeling either numb or like it had frost bite for a week now. I'm using ice-mittens for my hands so I don't know if it's the chemo or I really did get frost bite. weird.
Stay strong!
-
susan: I had sores the first round, but I was eating a lot of tomato soup and acidic/sour fruit (like Granny Smith apples) My nurse suggested to rinse with salt water at least 3 times a day...which I did the first time. The second time, I have stayed away from tomato soups and apples...and have not had any sores. I also rinse with salt water after I eat every time.
I got fluids yesterday, and it perked me back up! I was having some constipation issues, which I’ve realized now was because I was dehydrated! Trying to force more water down now, it’s a lot easier since I’ve been adding lemon or strawberries to ice water.
The other biggest issue is taste. Food does not taste good at all. I can barely stomach anything because of the horrible taste. I’ve lost 7 pounds. I have been doing chocolate protein shakes, and yogurts...but I just want to eat a cheeseburger and have it taste like a cheeseburger. I spent some time today ready The Cancer Cookbook...and found a recipe for curry chicken salad I made for dinner. It didn’t taste exactly like it should, but had the most flavor out of anything I’ve tried all week. I really really hope the loss of taste isn’t cumulative through the next few rounds. My taste did end up coming back fairly well after the first round. But I don’t remember everything tasting this bad last time. Maybe it did.
Welcome to all the new ladies...and best of luck to everyone through the next few days
-
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!🍦🍦🍦
-
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.
-
Trynryan, sorry you are having a rough time. I hope today and the weekend are better for you.
-
Smichaels11, a 75% reduction in your tumor! I am excited for you. That is great!
-
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.
-
Iamloved, that's exciting that the oncologist could not feel your tumor. Yes, thank God!
-
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.
-
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.
-
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.
-
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?
-
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.
-
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.
-
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!
-
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.
-
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.
-
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!
-
@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?
-
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
-
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.
-
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.
-
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.
-
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.
-
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😔
-
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.
-
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.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team