Starting Chemo December 2021
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Hello,
I am on day 10 of round #3. This time I am experiencing increased fatigue since day 3, my legs feel heavy, my heart rate is 100-110. I feel better today. Hope I will have some good days before next infusion.
I have gained about 10 Ibs since the chemo started. Mistakenly I took 8 doses of Decadron instead of 5 doses in round #1, which made me had super good appetite. Now my appetite is not so good, but I still feel hungry frequently, eat 5-6 times every day.
I only had bloody "boogers" for a few days in the first round. Don't have it in round #2 and #3.
I had diarrhea in round #1 and #2. For the first time, I had constipation on day 3 - 5 in this round. I took a half pill of Senokot Extra Strength on day 5. The problem was solved after that.
I've been using Penguin cold caps. Now I have about 50% of hair on my head. But the hair keeps shedding so I don't know how much I will be able to save after the treatment.
I used cold gloves and sucks during the infusion. I have minor neuropathy issues. Occasionally I feel numbness and burning on my fingers. Don't last so long.
I sucked ice cubes during the chemo treatment. I treat my tooth cleaning tools with boiled water every morning and rinse my mouth with salt water daily. I don't have mouth issues.
I hope everybody is doing well!
Take care ladies.
Stay safe! Stay strong!
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Does anyone have advice for itchy rash? The back of my hand has bumpy hive-like rash, and one side of my back. My dr. just said put benadryl on it but that helps the itch but does not resolve. Seems to slowly be spreading. I'm afraid of it getting worse with the next 3 treatments. Definitely a chemo-rash
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Hi Inthesage,
I don't have itchy rash. I know many people have this issue during their chemo treatment. You can search on this website using key words like "chemo itchy rash", you will be able to get some information from other people's posts.
Hope you will feel better soon.
Take care.
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ugh. So I'm going to see plastic surgeon tomorrow for possible (most likely) a hernia. Anyone else have this complication?
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Hello to All.
Has anyone experienced an annoying feeling in their ribs between chemo treatments Its not pain, its just there. Sometimes one side, sometimes both. It seems to move around. Its just irritating.
Thanks and sending strength to all.
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Had AC treatment #3 yesterday. It went well. Worked 3 hours and 8 again today, but was getting tired. I know tomorrow will be a bad day so I will be off then. I feel like I'm making progress -- the breast with the large tumor feels smaller and floppier, but I can still feel the thickened skin.
My crewcut is thin and fuzzy now. I wear a wig to appointments and hats everywhere else. Starting to get dark streaks in my nails. And weirdest of all, my fingerprints have smoothed over! My phone kept timing me out and wouldn't unlock. At first I thought it was because my hands were extremely dry (from the really cold weather). After I finally got in I added my "new" prints to the phone, and it works every time now!
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Blinx - good news about your tumor shrinking
Today, day 17, buzzed my head myself. I started feeling like the dog, shedding all the time. Strange how all this is starting to feel just normal
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Hi Kayce234,
Just wanted to see how your hernia check went. Hoping whatever is going on is a minor thing...
Also, Inthesage, I agree with the new normal feeling at times. I am not as startled when I see my almost hairless head in the mirror anymore. Guess we are truly adaptable creatures!
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Hello everyone. Hope everyone is doing good.
I'm sitting in the chemo chair with my 3rd treatment. No matter how many times I'm here it still makes me a nervous wreck. Only slept about 3 hours last night, thanks a lot to the steroids. All the pre nausea medicine should be making me sleepy. I will check back in a few days to let you know how my SE are with this one.
Stay safe everyone and have a good weekend!
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Goldengirl, I hope you have a restful weekend and are able to sleep tonight!
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Goldengirl - praying for a relaxing and not to bad weekend. My 3rd is Tuesday....
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DG2021 thanks for asking. I have to go for ctscan then see another surgeon. Whatever it is they can't do anything until after chemo so most likely will be fixed during my May revision....
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Good morning! Hope everyone is doing good. I finally got up this morning feeling somewhat normal. (For whatever "normal" can be right now.)
This 3rd treatment which was on Friday seemed to hit pretty hard. By Sunday night I was feeling pretty yucky! Fatigue has been really bad this time along with the really bad headaches. Slept off and on all day Monday and Tuesday. Mouth issues seem to be a little better with this "Magic Mouthwash". My stomach doesn't seem as bad this time, but I'm still having a hard time finding something I can tolerate eating. Mostly because everything tastes and smells terrible! If it's like the last two treatments that should be getting better. Better days are ahead!
Kayce234, hope your 3rd treatment went well on Tuesday! Hoping you get through this one without too much trouble.
Sun-shine, how are you doing? I'm thinking you will be on your 4th treatment this week. You are a few weeks ahead of me. Hope all goes well!
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Good morning everyone! Hope you're all doing well!
Goldengirl - thanks for asking. I just had my last infusion (round #4) yesterday and everything went well. I am done!
Glad to hear your mouth issues are getting better. Hope your appetite will get better soon. In the past 3 treatments, my bad days were from day 3 to day 12. I felt completely normal about 10 days before the next infusion in the first two treatments.
The 3rd treatment was harder to me too. I experienced increased fatigue in my legs, felt more tired when climbing stairs this time. Other than that, I was ok. I had some new SE, such as constipation, stomach upset, watery eyes this time. But these new SE were manageable, not so serious. My doctor suggested me to use artificial tear drops to take care of the watery eyes. I haven't bought the tear drops yet. I always hesitate to go in door shopping at the moment. I may order some online later. I will see.
Have a nice weekend!
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Just had my 2nd chemo on Tuesday. The dr. reduced the dexamethasone in half. That really helped my headaches and SE's. Mostly very fatigued. But terribly constipated even with several rounds of Senekot.
Both chemos I've had a fever of 100.5 at some point for around a night. 100.4 is when they tell me to call in. But.they have no nurse on call at the cancer center so I have to call the ER and those docs aren't familiar with cancer patients. Since my only symptom is a low grade fever, they just tell me to watch, take tylenol. Plus I live an hour from the hospital so not crazy about driving to town in the middle of the night if its not warranted.
Finally after days 5,6,7 (today is day 8) got a response on this through my onco. Not a usual symptom but happens. He said its my body's reaction to the Neulasta
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Hi Inthesage,
It's good your doctor helped you figure out the reason that caused your low grade fever. Hope this SE of Neulasta will be gone and you will feel better soon!
Today is the day 7 of my last chemo treatment. I felt very bad and uncomfortable in the past few days, tired with muscle/body pain, stomach upset and high heart rate etc. I stayed most of my time in the bed. Today I feel better. Hopefully in 2-3 days I would be able to get out the worst period.
Hope everyone is doing well!
Stay strong!
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I will be starting my second round of chemo on Tuesday. I felt crummy day 3 to 7, especially after the Neulasta shot. That one caused significant bone pain for 3 days. Had to get pain meds! Not looking forward to that one again.
Sun-shine, may I ask how your hair ended up being? I know you used Penguin caps. I am using Dignicap. Started very heavy shedding on day 14. Much more than expected. Curious how you ended up with Penquin.
I am a few weeks behind some here, but trying to get an idea for treatment 3 and 4. This thread really helps.
Best wishes to everyone!
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Hi Hippmark,
So far I think I still have about 40-50% hair on my head. But the hair still keeps shedding every day. Not sure how much I could save after the treatment.
My hair is shedding evenly so it looks ok. Not so bad. I wish I could save enough hair, which allows me to live without wearing a wig while waiting for the new hair grows back.
In round #3 and #4, sometimes I felt stomach upset after eating. Taking 1 tablet of Zofran helps.
Hope all of your treatments go smoothly and successfully!
Best wishes for everybody!
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Hi Sun-Shine. Thanks for letting me know. At this rate of shedding, which is very heavy, I'm thinking I might end up with 30% remaining. That won't be enough to cover without a wig. I was hoping to be in the 50% range of hair kept, but doesn't look like it. So, looking jnto options. Not what I hoped for, but had to try.
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Hi Hippmark,
I washed my hair 3 days before and 3 days after the treatment, and washed one more time in the middle of the 21 days. I used cold water and baby shampoo without parabens, phthalates, sulfates and dyes to wash my hair. I used cold caps 50 min before the infusion, during the infusion and 5-6 hours after the infusion.
You may have a different user guide from your own cold cap company.
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Yes, thank you. My instructions are different and I am following them. Just doesn't seem to be working for me however. I already permanently lost hair due to Lupus, so I already have bald patches Ive been able to cover with my current style. I made an appointment for a wig consult tomorrow. Trying to emotionally adjust to this latest news. Seems Ive been doing that a lot lately!
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Hello, all! It’s been a minute, so get ready for a long one.
AC was no joke and just about took me out. My first dose was 12/16, and the nausea was awful. My MO had said that your experience with morning sickness was an indicator of how sick you would get with chemo and when I told her I had hyperemesis with both of my pregnancies she said “Oh, boy”. And she was right.
Each dose was worse than the last and by the end I was on phenergan, zofran, and Ativan, and was still nauseated for a good 10 days after each infusion. And yet, since eating a little bit all day helped dull the nausea a bit, I didn’t lose any weight, even though that was the one thing I was actually looking forward to with all of this. 😒
My hair started shedding like crazy just before my second treatment. I started going outside several times a day to shake all the hair out of my head that I could so it wouldn’t clog the vacuum so much. On New Year’s Day, a big clump came out in my hand, and I was tired of the mess so told my husband to get the clippers out. I used a tape lint roller to get rid of the stubble bits that continued to fall out for the rest of my AC course.Other than that, I had pretty bad constipation that nothing really helped with, but I also have IBS-C, so that probably didn’t help. My nose, mouth, and eyes got super irritated. Saline spray and putting coconut oil in my nostrils helped with the bloody noses and boogers. Not much helped my mouth and eyes.
I also had a special oncology facial on my birthday (1/21) and her advice was so helpful. She said my skin was basically severely dehydrated from the chemo so I needed to switch up my routine to use as many hydrating products as possible. She also gave me a facial oil blend that is supposed to be healing for your skin. And then to top it all off, she said to sleep with a thin layer of Vaseline all over my face. I noticed a huge difference within a week and am so happy I saw her when I did.
I’m now on my 3rd dose of Taxol. It is sooooo much easier than AC! I feel like myself again and have been able to start exercising and eating normally again. I’m not even really having any fatigue, which is probably thanks to the mega-dose of dex I’m getting every week, but I’ll take it.
My hair has already started growing back. There was still a small amount of dark stubble left that never fell out with the AC, but I feel like I can see lighter stubble mixed in with it now. I’m really hoping those hairs are light blonde and that my hair isn’t going to grow back in white since I didn’t have that many white hairs before and am not excited to have to start dyeing my hair.
As far as Taxol side effects go, I started having neuropathy with my first treatment, even with cold therapy. It started with a mild tingling in just my fingertips. After my second treatment, the tingling spread to the entire length of my fingers and had been joined by tingling in my toes and balls of my feet, extremely tight calf muscles, and changes in my sense of taste. They put my on 600 mg of Gabapentin and the tightness in my calves and the taste issues have improved. The tingling is still there, but at least it hasn’t spread with this last dos. I’m thinking of adding compression to the cold therapy this week, though I’m struggling to find gloves small enough for my weird baby hands that would still let the cold through.
My liver enzymes have also gone up bit by bit with each treatment. Between that and the neuropathy, I’m wondering if they are going to reduce my dose at some point. I guess only time will tell.
Well, that’s where I’m at. Glad to see everyone else has made it through the last few months, too!
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Hi everyone. I wanted to pop in to offer some post-chemo experiences. When I was going through chemo 09/2021-01/2022, I wanted to hear from others who made it out the other side. I did TCHP X 6.
I read several posts here about mouth sores. I had terrible mouth sores. They were so bad that I couldn't eat even yogurt because of the pain. Ultimately, they prescribed 2 mouth washes. 1st was Magic Mouth, which is mixed at the pharmacy but is made up of: Benadryl, Lidocaine and maalox+ based on the RX label. Then they prescribed Nystatin Oral Suspension, USP . Both only work for a limited amount of time, but they did provide relief. I would recommend the Nystatin over the magic mouth, personally.
I also read about fevers in this string. I was admitted to the hospital twice for chemo side effects. Both times I went to ER for fever of 101+ and diarrhea - both unresolved with Tylenol (fever) and Diphenoxylate & Imodium (diarrhea). The first time, I let it go about 3 days. The second time I only waited 24 hours. Both times I was diagnosed with Neutropenic Colitis and Typhlitis. My lower GI tract just couldn't handle the Taxotere. I share this to encourage those of you with fever and diarrhea to contact your doctor/clinic if your symptoms aren't resolved by meds and to go to ER when they tell you to go. I hate the ER. The one here is crowded, stinky and just feels like the worst place in the world to be when you feel so ill, but I am glad I went because Typhlitis is serious. The first time I was admitted for 5 days, the second time it was only 3 days. This is a VERY rare side-effect and my doc said that I had an especially hard time w/ the chemo. Ultimately they lowered the Taxotere & put me on preventative antibiotics (Levofloxacin) for 7 days after Neulasta and it worked for the last 3 chemo infusions.
Side note: In the ER and hospital, I was told and in my medical record, they listed my mouth sores as caused by HSV (mouth herpes)- I was even prescribed Valtrex to help alleviate them. The sores were on my tongue and the back of my throat. One ER doc told me that chemo weakens my immune system and the Herpes takes advantage of that - runs wild... Luckily, during a later hospital visit- the attending doc ordered a HSV test and scrape/sample of one of the sores. It was NEGATIVE! They had just presumed that HSV was the cause and they were all wrong! She stopped the Valtrex and added an antifungal (I took fluconazole) to my treatment which really helped. If your mouth sores are super severe- it could be a fungal infection or candidiasis- which mine was. Depending on how bad yours are, you could ask for testing to confirm and hopefully get on a drug that will help.
Like many of you, I also had nosebleeds. Most were just pink- or a little bloody, like many of you have said. I had a terrible one that lasted an hour and was heavy. My platelets were always very low about 7-10 days after chemo and that's what caused them. My doc specifically recommended Afrin nasal spray- not daily, but for use if a nosebleed happened. There's something specific about it that helps (not sure what?).
Last thing... Hair. I did cold-capping and lost all my hair anyway. Like some of you said, it started w/ about 50% loss and then got worse. I know that it works for some people. I just wasn't one of the lucky ones. Hard to say if it had to do with all of my neutropenic issues or all the antibiotics or what... All I can do is hope that it comes back.
I wish the VERY best to all of you. Don't push yourselves and even as bad as my experience with chemo was... I made it to the other side and I feel MUCH better now. It won't be long before you are there, too.
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Hello,
Thought to give you guys some updates. I have completed chemo treatments for 43 days. I feel good now. I am about 90% recovered.
I have about 30-35% hair left on my head after using Penguin cold caps. Right now the only side effect that I have is that I feel a bit more tired when I climb stairs or hills compare to my energy level before the chemo treatment and cancer treatment. I was a very active and energetic person before I was diagnosed with breast cancer unexpectedly during my routine mammogram check. I feel that I will be fully recovered soon.
I did a bone density test a few days ago and found out that I have osteoporosis. Instead of taking AI, I will start taking Tamoxifen tomorrow. My doctor said Zometa infusion could be used to treat osteoporosis. She also mentioned that Zometa could reduce breast cancer recurrence rate by 2% in my case. I may get Zometa treatment later. Meanwhile, I am trying to improve my bone situation by taking calcium and vitamin D3 supplements, eating prunes and other good food, and doing exercise. If my bone density gets improved, I will switch to AI later.
P.S. I updated my diagnosis information in this new website and set to public. I don't know why it doesn't show underneath my message.
I hope everyone is doing well!
Take care and have a nice weekend!
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Hi Sunshine, That is great to hear about your recovery. I had my last chemo TC on March 22. This one really kicked my ass with fatigue. I could barely walk a block. If my friend hadn't come for this week I probably wouldn't have eaten anything I was too tired. I was very active as well and hope to get back to my former self ASAP. 6 weeks doesn't sound too bad!
I also have osteoporosis and after extensive research on AI with Prolia I will not take that. Prolia, which was recommended for me, can only be taken for 5 years and then for another 2-3 years you have to take drugs like Fosamax so you don't get a rebound break. I found a specialist who is advising 10mg. of Tamoxifen. I'm going to ask him about 5mg/day which is what is taken in Europe. Also, a friend who is a PA scored my DEXA on the FRAX score which is personalized. My score went from 18% in 10 years to 4%. I recommend you have your doctor to that.Also, if you have any recommendations for supplements after chemo, lay it on me. I already took D, but am now adding B12/Folic Acid and Iron.
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To all....
I was reading your posts and wanted to comment. I got Taxol and the C chemo in the middle of August through the middle of November every Friday. I felt good the say of infusion and the day after and then Zofran and Compazine kept my nausea away. Senna, the laxative assisted with the constipation.
I thougth about the Cap, but my MO at the City of Hope says it is a 50/50 chance. I thought about it. I had long red hair for 40 years way past my shoulders. I kept trimmed and wondered at what age i would finally cut it. Well 60 was it. I went to the beautiful department at the COH and inquired with the stylist when would it be best to cut my hair. She said after the first chemo. I made an appointment. I thought i would curl my hair and love on it, but i just brushed and took pictures. I went in that day, told the stylist noone has cut my hair besides my sister in 40 years. She did not hear me say "save it" so i noticed the hair on the floor and said "SAVE IT" We got a kid size pony tail by then. This was my only complaint. Anyway, i had her cut it to above my shoulder and very thin. My hair was thick. I sent the picture to family and some friends and said "Check this out"! At the end of that week i began to have hair in the shower. I went wig shopping with my sister and came home and had her cut my hair very short. We had 2 wigs and I just remembered how i did not want clumps of hair out in the shower. No big patches. This two step process saved me from that. Within just over 2.5 weeks, months of my hair was lost in the drain catcher in the shower. I bought Caps from headcovers.com and began my journey for a few months as the wispy hair gal. Just enough to peek through my bangs and then at the back. By early December it was all gone.
By then i had moved to my 4 doses of the Red Devil A chemo, but after one it was stopped. Turns out both cancer chemo drugs caused:
Pancytopenia - a lowering of all three types of blood cells; red blood cells, platelets, and white blood cells, which may lead to low red blood cell count, low blood platelet count, and/or low white blood cell count.
I was hospitalized and a round table of chemo doctors decided the targeted pill Talzenna would be better. I had that for 27 days until it did the same thing. For me, chemo ended the 2nd week of December. Surgery was to be planned.
I also wanted to say i was a platelet donor for 25 years. Those needles prepared me for the needles i have had in medical offices. The port sticks out a bit, but it has never hurt. Sometimes i feel a bit of a throb. I asked the COH and they say it looks good and they do not see an issue. Fast forward to left mastectomy's and tumor removal Feb 9, and Bingo. Tumor says i am HER2 positive. Now i start Herceptin infusions and possibly Perjeta April 1st. 2022. What a year so far. Right breast comes off using the skin saving mastectomy likely May 31st.
I love reading your experience , strength and hope. I can hardly believe i found it June 20th and here we are March 27th.
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Katg - Thanks for sharing your experience with us. Appreciated!
Inthesage - glad to hear your chemo is completed. Congratulations!
The first 2 weeks after the last infusion were the hardest time for me. Especially the first 10 days, I spent lots of time laying on the bed. After that I started feeling better and better every day.
The main SE that bothered me, started getting bothersome during chemo round #3 and getting worse during round #4, were leg muscle pains and leg fatigue. I felt very tired when I climbed the stairs, sometimes I was not able to do squat because of that. Now I feel much much better. I went out hiking this Sunday on a trail heading to America River. It's only a 2.8 miles trail, not so long, but the elevation changes made the hiking very challenge to me. My phone showed in total I walked 53 floors (Health app on iPhone). My friend who went out with me felt the hiking was not so easy for him as well. I'm very happy I made it.
I believe you will feel better soon. Just need a bit more time, perhaps a few more days. Drinking lots of water, resting and eating some good proteins, fresh vegetables and fruits are the keys for us to get recovery sooner.
Thanks for letting me know about the FRAX score. I will do some research on it and talk to my doctor later. Currently I am taking 20mg Tamoxifen daily. Before my bone density test my doctor intended to give me AI for 5 years. She said AIs are newer medications and work better. After the test, one of the option that she gave to me is to take AI plus Zometa treatment (Zometa infusion every 6 months for 3 years). I asked her about Prolia. She said Zometa has the benefit of reducing cancer recurrence rate. So she prefers to give me Zometa.
I chose to start with Tamoxifen first and hope I could switch to AI sometime later. For Tamoxifen, I need to ask my doctor how to monitor its side effects on uterus cancer and blood clots. Too many worries!
I have purchased some organic prunes without any preservatives from different sources. I'm taking 5-6 prunes every day.
Last week I did many blood tests, in addition to the routine tests for chemo patients, I also did fasting lips panel, fasting glucose, hormone test, blood vitamin D test etc. Except my blood vitamin D showed low, all the other test numbers are in the normal range. My doctor only recommended me to take calcium and vitamin D. Right now I am taking calcium 600mg twice a day, vitamin D 1000 IU twice a day. Don't take any other supplements.
All the best,
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Sun-Shine. I love how you stay busy. I love coming on here to see progress. What is working and how to live life the best we can. I have a second profile on here, I am looking to get back into. I had just wanted to get in and see people with some of my plan. The chemo, surgery's and hormonal. This bus we all got on, that has noone getting off...as with the expertise of the doctors and scientists, we keep getting new ways to beat this cancer and its effects.
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Thank you to everyone above for the updates. It helps me in making some treatment decisions. My last T/C treatment is Tuesday and the 3rd round really kicked me. It feels like what the 4th should maybe have felt like! Yesterday, I noticed some numbness starting in my right hand, even though I am using cold gloves for treatment. Due to my continued side effects from the chemo, I am going to ask my MO on Monday to a reduced dose for the last treatment. My numbers are ok, but the side effects I am experiencing are too much for my body. Because I live alone, I can't imagine making it through the 4th round with a full dose. I'll ask for a 20% reduction. With what I have read, I don't think it will be a significant result in my outcome. It's the first few treatments that are the most important.
I've posted this on the January chemo, but for anyone reading about cold capping, I'd like to share my experience. I have been using Dignicap and as currently as it stands, I have maybe 10% of my hair left. I would like to point out that I have some alopecia from Lupus already so had I not had that, I might have 20%. But it's not over yet. I know some people have good success (30 to 50% of kept hair). It just did not work for me. I plan on using the cap for the final treatment on Tuesday so hopefully I can preserve the follicles.
My bone scan also showed Osteo in my spine and Osteopina in hips. Looks like I will be on Arimidex so thanks for the tips on shots, etc. Not sure yet what I will do. But I'll cross that new bridge after radiation.
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Hi all,
Katg - Thanks for your encouragement! I also come to this web from time to time to share my experiences, to read other people's posts and learn from them. I've learnt a lot from this website and I am very grateful for those who shared their experiences and information with us, and encouraged and supported us like you did!
Battling cancer is very hard for each of us. If we could help each other and support each other, it could definitely make our life easier.
Hippmark - I read all your posts in this group and in January group as well. I know you live alone and do care about you. Hope your the last round would not be so tough for you. I felt my left hand finger tingling from time to time during the chemo treatment, even this morning, 40 some days after the last treatment, I felt my left little finger tingling. It's gone now.
I forgot to mention in my previous post, taking 5-6 prunes is good for people who have osteoporosis (I learnt from other sisters' posts in this website).
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