Starting chemo November 2020
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Marie - Thanks so much for your encouragement. I took the plunge and shaved my head. (Well my hubby mostly finished it for me. ) No more waiting or dreading. I took control and feel so much better. Plus it is fun to wear a Santa cap this time of year. My second treatment went so much better. Knowing what to expect and hydration was the key for me!
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I had my first infusion on Nov. 21. I am HER2+. They gave me Herceptin, Perjeta, Carboplatin and Docetaxel. I have to say the side effects were pretty bad. I had diarrhea for 19 days. I am still a little nauseous all day and find I have to keep something in my stomach every 2 hours to help combat that. I got thrush within 4 days and bad mouth sores. Also muscle spasms for a few days and a urinary tract infection. I almost always have a slight headache. My hair started coming out on day 17 so I had my daughter buzz cut me. It is more comfortable than long hair and my scalp when my hair was longer got super sensitive. I joke about hair loss being my favorite symptom because it doesn't hurt. Now my hair is short and thin and some small bald patches.
I feel like somehow I handled my first round wrong and that is why I had so many symptoms. I am not sure if I handled the drugs in the right way for symptom relief.
I have my second infusion tomorrow and have a lot of questions. I read these threads where people say it wasn't bad and wonder what I can do for a better round. Fingers crossed for Round 2!
Good luck everyone! Keep us posted on how you feel and what helps!!
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Hi Lisa1958,
Sorry that you had to go through those side effects. I'm on 4 rounds of Texotere and Cytoxan and had my second infusion today. I hope you get to see your oncologist before your infusion so that you can discuss the side effects you had and how to better prepare for round 2. That was what I did this morning with my oncologist and she reminded me to be proactive as much as possible instead of reactive with the side effects. One tip I would like to share is to gargle/rinse with baking soda/salt three times a day. It has worked for me through round 1 and helped with my thrush problem too. I know some use Biotene but I figured that since I have both ingredients at home, might as well give it a shot. I wish you well for tomorrow's infusion and hope that round 2 will be a whole lot smoother for you.
Jo
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Hi there. Lisa1958, I hear you blaming yourself for your symptoms, and my hope for you is that you lean on your NP more heavily and call her with every single question you have about what you're experiencing, all of which is so, so challenging.
Like Jo, I had my second round of TC today. When I told my oncologist about my mouth pain, she prescribed two rinses for me (which I wish I had before round 1).
- Chlorhexidine oral rinse (swish and spit twice daily), meant to prevent pain
- Magic mouthwash (swish and swallow one tablespoon twice daily)
I'll probably also continue with salt/baking soda rinses just because.
I have heard that Zofran can cause headaches, and I was advised to switch to Compazine if that happened. Perhaps you can ask your NP?
I can't believe you got a UTI on top of everything! So painful.
Good luck tomorrow -- we will be wishing a better experience for you. Let us know how it goes.
Sharon
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Marie, congrats on your liberating hair decision! I am likely following in your steps soon. I am chemo 2, day 1, TC.
May I ask if you are going to request a refund from the scalp cooling company?
Also, has anyone gotten any reimbursement from health insurance companies for scalp cooling expenses? We paid Paxman $1200 out of pocket and I just submitted the bill to Cigna. If anyone has any tips on how to advocate for getting reimbursement I'd be grateful.
Thanks,
Sharon0 -
wow Lisa1958! Sounds like they really threw the book at you. I pray the next treatment is easier. I can testify the magic mouthwash is truly magical. Works great.
I had my second treatment on December 3rd. I had horrible muscle cramps in my hands and feet 10 days after my first treatment, so I used the ice mittens and booties that you-all ( I DO live in Alabama) recommended during my second treatment. I’m happy to say although I was not cramp free it was very very minimal and only a couple of times. It made a huge difference. Thank you all! I had never heard of them before. This time I felt pretty good (aside from exhaustion and sleeping a lot) until my 10th day and then all of a sudden I started feeling queasy and I lost it. I tossed my cookies and went the other way for two days. Every time I tried to take my nausea medicine I would throw it up before it had a chance to do any good. My son who works for a local pharmacy told me about Zofran that dissolves under your tongue so I called and got some of that and that’s what finally turned it around. I haven’t been nauseous at all today but I’m still taking the nausea medicine because I’m afraid it’ll come back. It was pretty bad.
Well, I feel armed and ready for the next round on December 23rd thanks to your support and suggestions. I pray you are doing well.
oh! Almost forgot! Here is a chuckle for you: My cousin sent me a really nice coffee mug that says “This is my chemo mug and when I am done I am going to smash it to smithereens!” I am really looking forward to smashing that thing. Think I will make a ceremony of it.Night all.
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Lisa1958...I am from the July chemo club and wanted to tell you diarrhea was my biggest side effects. After my 1st treatment my oncologist took the prejeta out for treatment #2. Diarrhea was still there but perhaps a bit less. She added prejeta back in round 3 and The diarrhea persisted. So she finally removed it for my last 3 treatments. What a difference! As someone else said, O hope you get to see your oncologist before your next treatment. Prayers for you to have minimal side effects. Chemo was tough but I did get a complete response so hang tough!!!
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hello Iamloved. Love the name! Thank you for your words of encouragement. It helps to hear this from a seasoned battle warrior.
Pat
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Hello!
I have been doing so well but this week (Friday will be my 3rd infusion of 4 TC taxotere cytoxan) I am struggling. I just don't feel myself. A little achy, tired, heart rate is increased even while resting, I get out of breath walking, etc. I am not looking forward to next week when the taste buds are messed up. I want to feel good Christmas Day but I know I won't from past infusions.
I am wondering if it is just cumulative or if I am feeling down.
My hair is still there - I lost about 40% or maybe more. I can wear it in a ponytail and no one except people who know me well know I lost hair. I usually wear a ball cap out since I am sensitive about such thin hair. I still have my eyebrows and eyelashes. I heard they were the last to go?? I have been using serum on them.
Hope you all are doing well and had good days!
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Hi Marie, sorry to hear you are struggling at the moment - big hug x. I have been reading about taxanes and it appears that they may have a cumulative effect. Friday will be my second infusion and for some reason i am a little more nervous about it than the first time round. I will think of you when i am having it. Mine's over 3 hours, what about you?
Re-hair, today is the second day my scalp is super tender (12 days after first chemo) so i think its a matter of time before the hair comes off. My bikini line fell off today... eyebrows and lashes are still intact, i also read that they are last to go.
Danni x
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Danni
thank you! My second infusion's first two weeks were better than my first infusion's first two weeks. My third week I felt great the first infusion and this time - the second infusion I feel just a little bit weird but still pretty good. I hope my third infusion goes well but I have heard it is cumulative
My hair started shedding on the 19th day so just before my second infusion. My scalp was tender too. I have a cold cap so it didn't all fall out My bikini line fell out then too. My legs are smooth now - there are a few stray hairs but I haven't had to shave my legs or underarms for a few weeks now.
My infusion since the cold cap is long. They take 15 minutes putting it on; 30-45 minutes of pre-infusion drugs, 1 hr of taxotere, 1 hr of cytoxan and then 2 hours of just the cold cap on and then they loosen it and I have to wait 5-10 minutes for my hair to unfreeze so they can remove it safely.
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Marie - i'm not doing the cold capping, looks like I'm saving a bit of time with cold caps lol. My pre-meds are the same about 30-45 min, then 3 hours of taxol and then 15 min of flush (or something like that). im on two weekly cycle though.
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hello everyone!
I am 8 days post my 2nd of 4 rounds of TC and wanted to thank everyone for this forum to vent, gets tips and just to get the feeling we are all in this together.
I am 37 and without family history, known as the health freak so it’s been crazy this has happened but thank the Lord for all the advances and being half way done with chemo and post mastectomy still feeling really good.
I am doing to penguin cold caps the first treatment I paid for the trainer and the facility was so kind they allowed them to train my husband who has taken over. My expire eve with cold cap has been great, I was told last hair wash day is 2 days prior to chemo and then wait 72 hrs after and now I wash 2 x per wk. pain is very minimal lasts for 2 min and I take 1000mg of Tylenol 30 min prior as advised. No hair loss noticed until day 20 for me and is like a overall thinning unnoticeable to anyone else but I see thinning in the sides near my ears but seemed to come and go. I find it’s easier to do a very lose braid or or bun because if it’s down it’s more noticeable.
My tips for chemo is not to eat fatty foods 3 days prior and at least 3 days after although I am only doing 2 cheats a month, juicing/ home made fruit veggie smoothies, exercise and hydrating. I drink at least 100 ounces of water per day and especially 2 days before and 3 days after chemo and make sure to avoid dairy and red meats if possible. I walk everyday even during the chemo days I would say try to walk for 15 min 4 times per day and stretch, it’s crazy how my weird bone and pelvic/ neck pain would go away with this. Now I walk 3 miles 3-4 x per wk with strength training 3x per wk. I use my ninja to blend few cubes of ice, unsweetened organic coconut milk(2tbsp), 1/2 cup strawberries, 1/3 of large organic cucumber, celery, 1/2 green apple and 1 cup of spinach/kale/chard mix daily which has helped keep me regular. Try to intake at least 8-9 servings of fresh fruits and veggies.
Side effects- 1st round it started 3 days after my infusion which was the day I started my period (even though I got a lupron injection) but I was told by my oncologist to rest and don’t try to do much so I felt tired, nausea and with little appetite I ate only small amount of fruits, breads, potatoes etc. also major headache and then started the bone pains from zarxio inj. Scalp irritation, weird acne rash on my chest/back, hot flashes, dizziness. They lasted for like 3 days. My second round was amazing maybe little bit of fatigue and headache the 2 days after chemo but I think the addition of forcing myself to exercise and not lay down all day, dexamethasone 24 hrs prior to chemo and 2 days after and adding way more fruits and veggies via juicing really helped.
Sorry it’s a novel but I hope to try to help anyone the way you all have helped me:)
Also for those of you doing the cold cap, do you guys use a shower cap to protect your hair the non washing days and best shampoo you all like to help with the scalp irritation (dry, flaky) that’s still ok to use while using cold caps
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hello sharon,
I hope the new regimen helps with the mouth pain I was told to brush my teeth 4 times a day everyday and then use this gargle recipe (16 oz water mixed with 1/2 tsp sat and 1/2 tbsp of baking soda). Not sure if this we’ll help just wanted to share. I haven’t had mouth pain just dryness to my tongue at night and at the top of tongue slight weirdness like I drank something too hot but no sores or pain
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Baile112...Try to get vitamin A drops from a naturopathic dr. They were one of the best things I took during chemo to help. No issues with mouth sores after I started those drops.
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Hi Everyone, today is day 3 of my 2nd infusion of TC. Like round 1, I'm starting to feel abdominal pressure. I've been taking GasX and Senna S to help. Does anyone else experience abdominal issues too?
Another question - for those with ports, do you know how long you'll have to keep it? I did ask my oncologist on Monday but with the list of questions I had and answers she gave, I can't remember what she said. I have chemo brain I guess!
Marie - I'm sorry you're struggling, I am too. Just trying to be prepared for this round, the side effects kicking in and the isolation is affecting me. I feel like I'm on a roller coaster ride with my emotions. I keep reminding myself that this is just temporary but some times even that is hard to cope with. I hope that we'll able to snap out of it soon!
Pat - I'm glad the mitts and socks worked for you. I used mine again this 2nd round but had to take my hands out of the mitts for little breaks because it felt like I was getting frost bite! When you have your smashing ceremony of that coffee mug, I'll do it with you in spirit!
DanniB - good luck for Friday! I was nervous too on Monday although it was round 2. I hope yours goes smoothly!
Baile112 - welcome! I admire your ability to stick with a work out regimen. I try to go for 20 - 30 minute walks just to get out of the house but that's the most I seem to be able to do. Your ability to down that much water is also great! I've been doing good judging from the number of times I have to use the restroom but yesterday and today have been tough. For some reason, I haven't been able to down as much water so I've been adding a little juice to make it drinkable. I do the baking soda/salt mouth rinse too but I slack on measuring the mix. I feel like I'm good if I manage to do it at least 3 times a day!
Hope everyone keeps well!
Jo
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Thanks everyone -
Met with my oncologist. She reduced Herceptin. And added pepcid to my daily medication and my Infusion nurse wrote out a whole plan to stay on top of everything. Feeling good about this round being better! Day 2 just tired and woozy. Got City of Hope special Rx for Magic mouthwash so hope that helps with mouth. Also rinse with biotin. Not used to taking o many drugs. I have timers going off all day but if it helps...
Lisa0 -
I did notice abdominal pain with my second one as well more like acid reflux I did some yoga poses, exercise and tried famatodine (over the counter med) with improvement. I found if I ate smaller portions every 2 hr and stayed away from dairy and breads it resolved. Much easier to take in fruit and veggie juice blends too. Hopefully helps!
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so happy to hear you are doing better this round Lisa it’s good to know it doesn’t always get worse the way the oncologist make it seem, hopefully it stays that way!
Question anyone getting weird rash after TC? I had a small bruise from holding heavy groceries on my forearm 2 days before chemo and 2 days after my second round have turned into red round spots that are slightly itchy. I feel like it could be normal and should go away don’t want to bug my doctor thanks al
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Hi all,
I'm just about to go for blood tests and oncologist appointment ahead of tomorrow's session. The tenderness of the scalp has gotten progressively worse, even shower water today is hurting it. Will mention to the doctor and see what they think.
JoW888 - I do the same with water, usually im good with it as is, but for the first 5-6 days after chemo, i would add a bit orange or cranberry juice in to make it easier with dry mouth etc. I use Biotine and the saliva stimulating candy drops, seems to have worked first time round. With abdominal pain, i managed with the hot water bottle - i also really dont like taking meds and would only do as a last resort. I have severe gas and bloating and the hot water bottle worked like magic, i still use it now in the evenings when i still get some discomfort. I was told to take Buscopan (for IBS) if needed, but i didn't need to yet.
Lisa1958 - so so glad you are feeling better this time round and the tweaks in medication are working. Your infusion nurse sounds magical, it really helps to have things written down.
Baile112 - i admire your determination and strength! In the second week i have managed some home bike exercise and a bit of gentle stretching only (prior to the op i did yoga an pilates for about 10 years). I live in the middle of the city and dont feel comfortable going outside at the moment, which is rubbish. You mentioned that you are eating fresh vegetables - i miss salads so much! Can i please ask if/how you prepare them? I was under the impression that the raw fruit and veg should be avoided unless the skin can be peeled (like cucumbers / oranges) or they can be thermally cleaned to avoid infections - have i got it completely wrong? Re-rash, whilst they said this can happen and is not to worry about unless it is in the site of injection, i was told to call the nurse with anything that was not there before / is unusual for me so they can keep track. Maybe worth mentioning?
Lamloved - thank you for reminding about vit A drops, i has a stash and i used them before on cracked lips in the winter. Just popping and rubbing the contents on the cracked skin. I will use them again now on dry patches
Best of today to everyone!
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I had a weird blotchy face yesterday and flushed but went away, I was reading about easy bruising but haven’t seen any. Hope yours goes away!
Don’t feel as good as yesterday. Hopefully drugs will kick in. Didn’t sleep much after 2:30.
But 2 down! That’s something to be grateful for!
Lis
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Jo
Coconut water is a nice change from regular water. I like Harmless Harvest Organic.
Lisa
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Lisa - 2 down! i can't wait for my 2nd one to be down tomorrow
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Just came back from my 2nd session. less than a minute in i had an allergic reaction and just managed to say sorry, i'm not feeling then woke up with about 10 doctors and nurses by my side. Really scary experience, but after more antihistamines and steroids, they restarted at half the speed and it was ok. after an hour, set back to the normal 3-hourly speed. Now i have to take additional meds ahead of next sessions - loads of them for 3 days. Feel so lucky, the nurses and doctors were just so amazing.
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DanniB - that would be so scary! I'm so glad the doctors and nurses are there for you.
Lisa - two down! That is great. Hope you are feeling better and side effects are minimal.
Jo - they told me that as soon as the oncologist says no more treatment they can take the port out. My last infusion is January 8 and we are talking about having it out at the end of January since I won't be getting any more chemo. I have some abdominal issues but it seems like others on here had some good ideas.
I just finished my 3rd session of taxotere cytoxan TC. One more to go. I am still here because I have to stay 2 hours for the cold capping. Everything has gone good with my three sessions - knock on wood. I have lost a good deal of hair but not all. Maybe 50%. Not sure if it is worth it - it does still shed and make a mess probably not as much as going bald but at least you can shave it and then it is over until it grows back. Some say it will grow back faster but we will see.
I saw nurse practitioner today instead of doctor. They don't think I need blood work in between since I am doing so well - they say, but I can always call if I think I need something. My blood work is good. So hopefully the side effects this time won't be worse than last session. I sucked ice most of the way through trying to get my taste buds not to shut down so long . The first session is was only about 10 days but the second session seemed more like 14 days. We will see. One more session January 8. I do see oncologist January 7.
I am planning my exchange implant surgery; right now it is scheduled for February 1 if I am recovering well from my chemo. Usually they want you to wait 4-6 weeks. It will be 3 weeks 3 days. If I have to wait it will be March 1. I just want the real implant in and the expander removed. It really hasn't been that bad but I am ready. And this port has been great but I can't wait to get it out too.
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DanniB - That is seriously scary! So glad you have a good medical team.
Marie914 - Congrats on having only more TC to go. I have two tissue expanders in and am looking forward to hearing about your implant process.
Question: Has anyone else with a history of fibroids (like me) experienced post-chemo uterine bleeding?0 -
HI Marie - glad you will get to see your oncologist ahead of the last session and can confirm if it is a good idea to skip the blood tests. I had these scheduled before the chemo begun so not sure if this is a different protocol for where you are. Re-implant, i am not having this but i think if you are ready and feel well enough with doctors happy with your recovery from chemo then i would do if i were you. It is so individual with 4-6 weeks guide and as yours is only 4 days out and no option for an earlier op than 1 mar seems like a reasonable option provided all is well. Good luck to you lovely.
Sharon - i dont have a history of fibroids, but i had a fertility preservation treatment before chemo with some overstimulation and suspected ovarian torsion. I had my period during first chemo and then started spotting on period days 9-11. I never have had any bleeding between cycles but was told by the nurse that chemo can cause this. Have you mentioned to your nurse?
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Hi Everyone,
Since I've regained some strength back, thought I would check in. The last few days have been quite rough. Seems like my down days kicked in earlier this second time around.
Lisa1958 - thanks for recommending coconut water. I've never tried it and would be open so that I can get more water down.
DanniB - so sorry to hear of your experience, it is scary but I'm glad those doctors and nurses were there for you. Hope that your next round will go a whole lot smoother!
Marie - you're almost there, yay! Are you going to ring the bell when it's done? I'm glad the cold capping is some what working. It's good that you've got a supportive team of nurses at the infusion center that's patient and willing to work with you on the cold capping. From speaking with the nurses at the center I go to, seems like they're not too keen on patients doing cold capping.
Is anyone doing radiation after chemo? I hope I get a good break before radiation starts.
Take care,
Jo
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Hi all -
Day 6 after 2nd treatment. My gut is always in a turmoil and I have Thrush again. I guess this is the new normal. Anyone ever find anything to help with your belly?
have figured out that I need activity to distract me so have been in my craft room alot.
Got some cute turbans with a crazy pattern on them that I like. Going into LA tonight with my wig on just to look at lights. Feel a little silly wearing it. I think im glad I got it though.
I started making smoothies which is nice on the mouth. Anyone have any good recipes that don’t involve banana?
Hope everyone had a good weekend!
Lis0 -
Hiya all, day 3 for me and so far so good but expecting the muscle pain to kick in fully anytime now.
Jo - i have radiation after chemo but dont know when / how long for yet. My chair neighbour had her last chemo on 18th (Yay) and she was starting radiation end of Jan, so c. 6 weeks rest for her.
Lisa - i love strawberries and milk shake with vanilla ice-cream
not really a smoothie lolFestive mood to all
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