Starting Chemo January 2022
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I had my 2nd treatment today. After the first I was worried to even continue. My doctor agreed that even though náusea and vomiting are normal side effects, the degree in which I had it was not normal. Today my infusion was reduced by 15%. So hopefully it helps, I also got a prescription for Dexamethsone to take for 3 days and they added Xanax as it has Anti náusea properties.
Other than that, the fatigue is real, brain fog too. I lost my hair earlier this week, but found some cute wigs to compensate. I also developed sores/dry patches on the corners of my mouth but I was told to put orajel on them.
I'm 1/3 of the way done 🥲
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hartnsole, happy it was not too bad for your first. I felt good day of chemo and the day after. Drinking lots of water is good! My side effects (SE's) started on the 3rd day, after the shot. Seems like most people start se's on the 3rd day. Also, you might want to consider taking the Zofran every 8 hours or 3 times a day. It might help to ward of nausea a little better. It is one side effect you hope not to get so you can eat. Best wishes over the next few days!
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Hello Everyone! So glad I've finally found you!
Started my first of 12 wk chemo on Feb. 2 - Groundhog Day. Every week feels like "groundhog day."
Thank you all for sharing. I feel less alone in this.
Just before my 3rd infusion this week, I noticed my hair starting to fall out. It freaked me out a bit because I've had long hair for so long. I decided yesterday to get my hair cut shorter. That actually felt better and hopefully will help me cope with this one of many side effects.
I have a lot of support from my husband, family, and work colleagues (though I'm on med leave). But reading your words helps keep me going.
Thank you! Sue
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Hi everyone, I'm going to start following this thread. I've been on the December thread but many are finishing up there. I started TC Jan. 18 and have gone through 2 rounds. Yes, everyone's experience is different but I've had a few weird things worth noting, both SEs from the drugs to prevent SEs.
1st round I had terrible migranes from day 2-5. I'm not a headache person. Nothing worked to calm it down. My doctor said it was from the dexamethasone and reduced my dose in half. 2nd round no headaches. I'd been taking 8mg by mouth the night before and 12 in the IV. He just cut out the oral dose and left the IV
Both rounds I had 100.4 to 100.6 fever starting day 4 or 5 through day 8 or 9. After the 2nd round I pressed the nurse on Day 8 to find out what was going on. The ER, which was the contact #, only told me to take tylenol. I just wanted to make sure nothing bad was happening. Plus the fevers exhausted me. The doctor came back with the fact that my body was reacting to the Neulasta. Not a typical reaction but not that unusual. Don't know if he'll change anything round 3. I think those are pre-filled.
Besides Big C and fatigue, those are my worst SEs. Thanks everyone for letting me enter this group thread.
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Welcome 22Lumos and inthesage! We'll be on this chemo journey together!
Sue, so happy for you that you have so much support. It means so much going through this. I live alone, so it makes it a little tougher to get everything together. Sounds like you are on weekly Taxol? I have a total of 4 rounds as I am on T/C and my second infusion will be Tuesday. I'm already getting nervous about it. I tried cold capping for my first round and I had hoped to keep 50% of my hair. But by day 14 it started to shed and now I've lost 70% already and I am devastated. I was not prepared for that so I cried most of the week. Looked at wigs yesterday and cut more hair off. Now I am trying to get used to this new thing I was hoping to partially avoid. This was almost as hard as getting the diagnosis. I imagine that may not be your experience.
inthesage, I am so sorry about your migranes. That is one thing I have not experienced. So happy they figured that out for you. I had a slight fever from Neulasta and yes, it is pre-measured. What I did get from it was terrible bone pain. Claritin did not work for me at all. Tomorrow when I see my Onc, I'm going to get pain meds as that knocked me out for 3 days. I also had some drenching night sweats, and the other "normal" side effects. But that shot took me down.
Onward we go.
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Thanks Hippmark
I am on weekly taxol. Originally, the doc said I may not lose my hair. HA! When I told him, on week 3, he said "right on schedule." Hmmm. My hair was long and I didn't want to deal with it, so I got a short cut and cried through most of it. My stylist was wonderful and very kind. I'm getting used to the constant itch and shedding. This morning, I woke up to a clump in my hand and all I could do was laugh. My husband, who has been so wonderful, said, "Don't laugh---on second thought, laugh!"
Laughter is important and I try to laugh, but I cry too. Balance.
My thoughts have centered around the idea that Nothing Lasts Forever. I've always looked at that phrase negatively. But today, I'm thinking about all of the things that I'm experiencing right now that won't last forever and I'm focusing on seeing the light at the end of the long tunnel. Sounds like a poem in there somewhere.
Question: Water has been tasting metallic to me--all kinds of water from tap to spring, etc. Any ideas for enhancers or fruit/veggies that will help? It's been hard to choke down the water.
Have a positive week everyone!
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The metallic taste is standard chemo side effects for some. I have it too. I put a little Gatorade in my water. Some people put crystal light or maybe a V-8 splash.
Hope that helps!
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Hippmark Here's hoping this second round is a lot better with the Neulasta bone pain. Let us know how it goes.
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Hi all - and welcome 22Lumos and inthesage (I think we were both in the December thread too before this one started!)
Yesterday was my 3rd of 4 treatments of Taxotere and Cytoxan. Hoping that a "cumulative" effect does not happen this time, though the doctor and some others have mentioned that it could this time. Anyone experiencing this? I actually started to feel really tired and achy last night as soon as I got home ... fingers crossed.
Fortunately, we have figured out a good workaround to avoid the red line burning tracks that developed several days after my first infusion from the Taxotere. I still have them and they might not resolve, apparently. Since there are only 4 scheduled on my treatment plan, my oncologist opted for IV delivery instead of a port - and I am happy with that as I am used to it from years of having Remicaid infusions for rheumatoid arthritis. To avoid the burning again after the second infusion, the team supplemented a bag of fluid while the Taxotere was being administered to help diffuse it as it went in. They also applied warm packs to the infusion site to further help distribute it. It worked like a charm so we did that again yesterday.
The metallic water taste is crummy and, using Gatorade or fruit juice does help a lot (cranberry works especially well in my opinion) t. I still really dislike the steroid (dexamethasone) - one of the worst parts for me with not being able to sleep and feeling super jittery.
I have been experimenting with wearing a wig more now. Have been much more comfortable with the head coverings when I work so far. Once I get past a chemo week, things feel pretty good - which I am very grateful for - but, this bald thing is going to be around for a while and I am trying to work toward that - will check into some of those wig threads, for sure!
Take care,
Donna
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Thank you DG2021!
The water suggestions help. I'm not a Gatorade drinker, but the cranberry was good and my husband picked up several flavored enhancers this week. It's much better getting the water down.
I agree about the steroids. They added some additional in my infusion yesterday (#4) and my legs were very jittery. Thankfully that went away before I fell asleep last night.
I still have some hair so I'm wearing my golf caps, which tend to cover the bald patches on top. I also purchased a few hats to try out. I haven't explored any wigs yet--I'm not really very daring. But I'd be interested in learning everyone's thought process about WIG vs. HAT. I've never really had a preference for either.
Thank you!
Sue
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Second round done on Tuesday. On day 3 here. This time, the steroids bothered me in the sleeping category. Haven't slept much for 2 days, but I'm done with them now. Does anyone else get drenching night sweats? I don't see too many others mention that, but I'll take that over some of the others SE's.
There had been discussion about dropping my Neulasta shot to 1/2 (3mg) but that didn't happen (I had really bad bone pain the first round). So yesterday, I got the dreaded full dose. Ugh! At least this time I have pain meds to deal. Last time was a shotgun ride through hades. I started calling that shot Satan. Maybe this time won't be as bad?
DG2021, I also have a red line from my first infusion of Taxotere. My nurse told me Taxotere is very hard on your veins. It's still there. The infusion Tuesday was in a different spot on my arm and seems to be ok so far. Do you know what the bag of fluid was they gave you in the IV line? Maybe just fluids?
I am still mourning the loss of most of my hair. I had really hoped to keep 50% with the Dignicap, but I think I'll be lucky to have 15% left, which is not what I had expected. It's continuing to "shed." That's the word they use instead of simply fall out all over the place. Still very hard emotionally to deal with as that is your reminder when you are trying to move on. I have been looking at wigs as I will need them when I start to work again. I have been impressed with the Raquel Welch line. I went to a wig shop on Saturday and 1/2 human hair and 1/2 synthetic was $1400! Not in my price range. Right now, I am simply wearing soft caps and the fitted silk scarves, which are nice.
Thanks everyone. This thread really helps me to process, share and get through the days!
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Hi all,
Lumos22, so glad cranberry helped! Drinking is so important to flushing the meds out. The more I pee, the better I feel a out this stuff somewhat leaving my body!
Hippmark, the fluids were just plain, IV hydration fluids. Using them along with the warm compresses really helped. They were pretty emphatic that they do not want to have those red track marks and told me to let them know at once if it starts again. So far, so good from infusions 2 & 3.
Lastly, I found a great wig ($220) along with really, really useful videos and information at Godiva's Secret Wigs, if that is of any use. I am finding that this is such a new thing for me to use that I just have to keep practicing with it and making it part of my new normal (temporarily!!). To really make it more "me," I am getting the bangs trimmed this weekend by a friend.
I am grateful to have you all to chat with from time to time.
Donna
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Just had my 3rd treatment on Tuesday. I noticed a few weeks ago a change in my eye color. My eyes used to be green but now they are blue. But today taking a walk the sun was bright with patches of snow on the ground and I had a few bouts where my eyes could not focus, and I had sunglasses on. I find my eye color change and now eye vision changes concerning. I called the cancer center and they told me to see an ophthalmologist. Another strange symptom that is not in my packet of symptoms to watch for.
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Hi Inthesage. I've never heard of an eye color change! I've read there can be some eye issues though. I can tell you my eyes are more sensitive right now. Watery mostly and light sensitivity. Hopefully this is temporary.
I agree with the symptoms you weren't expecting however. I've read about them on the "probably way down the list of getting" but I have a couple if those too. Hopefully, this will resolve for you and you are doing ok after your 3rd round. My 3rd is in a week!
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Hi everyone! I started chemo on Jan. 17, but just popping in here for the first time. I did round 4 of AC last Monday and will start the first of 4 rounds of dose dense taxol on Monday! I was fortunate to have very few side effects from AC. I had really hard stools that I took care of with Senokot, Restoralax and prunes and then I got a prescription for heartburn and that went right away! Other than that, the steroids ruin my dreams (haha) of a full night of sleep but I’ve been able to power through. Those who started with Taxol or have already starte, how’s it going?
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Welcome Akolmchen,
I just finished my 6th dose of Taxol. Sounds like you've had similar side effects to mine. Glad to hear they are manageable right now.
After my third dose, I started losing my hair. As of now, I still have some hair, but not much. Some people used cold capping early on. I didn't. Perhaps they will respond here. I've never been a hat or wig person. But I wear a lot of comfortable hats now. Others have chosen wigs. I'm not there yet.
I have good days and not so good days. But I've found that LOTS of water helps to flush out the chemicals after an infusion. Also, staying active, for me, has been key. I was active and walked a lot before all of this began in January. I lost some of my endurance, but I'm slowly pushing back.
I've also altered my diet a lot, after quite a bit of reading. I stay away from things that would irritate the acid reflux reaction. I've never been much of a medication person, so I try to solve side effects in other ways, if possible. A friend gave me some ginger chews that have worked amazingly well for upset stomachs. I've adjusted portions and eat small meals and snacks throughout the day, with my most substantial meals in the morning and at around 4 or 5 pm. I don't tend to eat after 5--it's irritated the reflux at night.
I've had the steroid effect of not sleeping well, but so far, the walking and exercise bike have solved a little of that.
Good luck! Stay positive. This doesn't last forever!
22lumos
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Hi All - hope everyone is feeling good today! I had my third T/C infusion on Monday and the follow up shot on Tuesday. Starting yesterday I had pretty intense bone pain in my legs and tightness in my stomach with some constipation. Having some lightheadedness for the first time this time too. It’s difficult to work, which is unfortunate. Hopefully tomorrow will be better. Hugs to all of you!
Debbie
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Hi Everyone. I will have my 3rd T/C infusion on Tuesday, The second round, 2 1/2 weeks ago, was a bit different than the first. A little more fatigue and my fridge (full of food) smelled like everything was spoiled. I'd rather have the metallic taste over that. And this time, the steroids kept me up
Unfortunately, my veins do not like Taxotere and I have red streaking and spill over chemo into my tissues. I am hoping those veins will recover in time. I am getting a picc line inserted on Monday for my final two infusions. I don't want it, but it is better than the alternative of continuing harm to my veins and better than a port. I only need it for 3 weeks (until final chemo day). I am disappointed my nurses did not discover this and tell me to try a picc. I had to research and insist on an additional appointment with the Onc to discuss to get the facts. I even pointed it out to the nurses and tech. They just said "put a warm compress on it." And the tech that took my blood week after chemo did a bad stick and I ended up with a hematoma at the site.
Regarding my cold capping for anyone asking questions. I am using Dignicap, but have already still lost 80% of my hair. My Doctor was surprised, but the nurses were not. I believe it works better for some people than others. This is something I have had to adjust to and it is hard as I was hoping to keep 50% of my hair. I am still going to cold cap the last 2 treatments and I am hoping it is still protecting the follicle from permanent damage. I also understand your hair can possibly grow back faster. it will be very very cold on my almost bald head, but I am going to power through.
The final piece here is that my WBC count shot up to 39 with the shot. Again, I discussed having a 1/2 dose of Neulasta (3mm instead of 6mm). So the Onc. agreed to 4mm instead of 6mm. If that will help any of the side effects of the shot, we will see come next week. But it is a battle to get them to come down off that 6mm if your count is good already. I also had intense bone pain from the first 2 rounds of the shot, but this past time, I had myself a nice bottle of Percocet. Only used 4 pills, but it was a lifesaver.
So, I had some setbacks I hoped not to have, but it could be worse.
Wishing everyone the best!
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I had my 7th Taxol infusion yesterday. While overall I suppose it's better than AC, the weekly infusions mean I never get over the side effects before I'm back for another round. I don't get the steroid beforehand, which is nice. However, the last two infusions have caused weird pain in my neck and down my arm while theyre being administered, and I wonder if something's up with my port. My current side effects include indigestion, joint pain, stuffy and bloody nose, headaches, metallic taste, fatigue, light sensitivity, and neuropathy in my hands and feet. I'm currently at 80% for a dose due to the neuropathy.
Hippmark, that's really too bad more of your hair didn't stick around! I can't even step outside without a beanie on, I can't imagine cold capping a bald head! But I hope it gives you an edge in regrowing hair - it only recently dawned on me how long it will actually take to regrow my previously long locks - I have a wedding to attend in September, and I can only hope to have some hair to style by then!
I hope everyone is doing as well as possible. Hang in there!
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It's now been 11 days since my 3rd treatment. Went to the eye doc yesterday per my oncologist. Two days after my treatment I had intermittent blurred vision during a walk on a very sunny day with patches of snow. Plus my eye color is now very blue most of the time vs. green. All was good and he agreed with me that it was probably due to the effects of the dexamethasone which really affects my head, like migraine affects.
My 3rd treatment I was more fatigued and harder recovery. On tuesday they did my blood work. I compared it with the blood work right before my 3rd chemo and all the others. Seems like I started with a below normal RBC count on this one. I don't eat red meat, but thinking that exacerbated my fatigue, I'm eating liver (which I hate) and some red meat before my next treatment.
Also, FYI, the usual constipation was pretty bad and not one of the OTC drugs worked. Finally prune juice was the answer.
Hippmark - glad you found a solution for your veins. I resisted the port but it really has been a life saver with all the blood draws along with the chemo. Glad you found relief with the Percocet. Bone pain is horrific.
Debbie - are you doing Claritin?
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Hi IntheSage - yes, I am doing Claritin too. It’s been 3 days since the shot so hopefully it will be better today.
For those who have finished, do you have to get the shot after your final chemo treatment
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Pokémon, that is a good question about receiving the shot after last chemo or not. I wondered the same thing as I too get very intense bone pain. If nothing else, I am certain I can talk my MO into a 1/2 shot.
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I did receive a Neulasta shot after my final AC.
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Hi all,
Does anyone get infusions of Keytruda? Had a really rough time today after infusion yesterday. Just wondering how others might react.
Thanks, 22Lumos
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I do not get Keytruda. Wish I could be of more help. I hope you are doing better!
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Talked to my onc - she is giving me the shot after the last chemo treatment (Monday - yay!!!). She is giving me fluids the day I get the shot and the day after just to try to keep me well hydrated and feeling better. After the last chemo, I get a day off and then 6.5 to 8 weeks of whole breast radiation and then I'm done. I think I can finally start to see the light at the end of the tunnel.
This is where the hair is Bummed I lost so much but grateful I still have some
Hoping it will grow back quickly and still glad I cold capped.
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Pokemom, good luck with that last chemo.
I got my last chemo on Tuesday. Yesterday was rough with nausea and general yuck. Today, Day 4 and 5 are usually my most fatigued. But glad I can start working on recovery and back to normal rather than hit again.
I've already done radiation in November because they forgot to do my oncotype and thought I wouldn't need chemo. So my "done" milestone will be in 2 weeks when I have this port taken out!
Anybody have recommendations for vitamins/supplements to get healthy and strong asap? I know biotin for hair and already started taking that and vitamin B12/Folic Acid. I heard collagen also for hair and nails but I think I had an allergic reaction to the powder I purchased which might be from shellfish. Also, a friend is sending some special iron that is more digestible and doesn't cause constipation. Any other recommendations are welcome.
So happy to be finally DONE.
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Congratulations inthesage for being done! Although you are working through current side effects, it must feel good! I take all the supplements you mentioned along with B-6, calcium, d-3, K-2, zinc and turmeric. I hope you will be on the mend soon!
Pokémon, I envy you were able to keep more hair than I with cold capping. I only have about 10% of my hair left, even with cold capping. So your hair looks great to me! And I know you are looking forward to that last chemo on Monday!
My final chemo is a week from Tuesday. This third round was definitely tougher. More joint pain, more stomach issues. I am very happy I got the picc line so no more painful pokes right now. It's saving my veins from the chemo spillover from the first 2 rounds. I'll be just as happy when it's out too!
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After Chemo #3 (TC) I started having breathing issues similar to asthma. I was told it had nothing to do with Chemo by the Cancer Center nurses. It was almost resolved and then Chemo #4. Just like before, around day 10 after the infusion my chest felt tight and air passages irritated so I had a dry cough. But this time symptoms were more intense. Although the Cancer Center still thought it was something else, I wanted to try an inhaler as I was really uncomfortable, coughing a lot and esp. at night. They had me call my primary care doc, which I could not understand as she isn't a cancer specialist.
Today I had a zoom with Dr. Link who I'll use for my hormone therapy. He said right away that the Taxotere had irritated my air way passage tissues.
I wanted to post this in case this happens to anyone else. If I don't feel better next week from the inhaler, a 10 day steroid might be next step Dr. Link said, although he said it will eventually resolve on its own.
Otherwise, I am feeling much better compared to my other infusions and I believe it is from the B12/Folic I am now taking. No Neulasta fevers, my legs don't feel like rubber going uphill, and few bloody noses. The fatigue will just take time to resolve.
Good luck to all.
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I finished my final chemo Tuesday. But! Not without some final complications just to give me the old heeve hoe out the door. My underarm started to swell and I thought it was the beginning of lymphedema. I saw my Onc. Monday before chemo day and he wanted to get an ultrasound stat. Turns out my picc line caused a blood clot under my arm. So I couldn't go out with a wimper. Now I'm on blood thinners for 3 months.
Onc. agreed to 20% dose reduction for final chemo as well as only 3mg of Neulasta shot. So I hope that helps with some of the current/upcoming side effects. I do have some neuropathy in both hands fingertips, although I iced. I hope it goes away.
Already had my mapping for rads and will start on the 19th.
Thank you to January (and other) chemo groups. It's at least good to be past this part!
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