Starting chemo February 2020
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Thanks for the hope morrigan25, it helps on my way in today, Meeting my new oncologist today too, since mine went on leave when the stay at home order started. No visitors, but it'll be nice to have a quiet day to myself.
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This is Day 9 of my third chemo and its really hit me like a Mack truck. Serious nausea for the first time. I'm taking Zofran every eight hours. No appetite whatsoever. I'm trying hard to hydrate but Jello and popsicles is about all I can manage. With the other infusions, I bounced back by Day 6-7. Ugh.
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I suspect #3 hits bad because it's the first time we get the fastest delivery (1 hour T, 1 hour C, 30 min H and 30 min P)
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MNSusan - I had a similar experience with #3, I lingered on a few more days with nausea and diarrhea.
mmorigan - I think mine are all the same except for the first treament in terms of delivery.
I went for #3 today and had low platelets, so they decreased my carboplatin, which was kind of disappointing, but also kind of exciting because my nurse said I might have less side effects. They said low platelets are likely due to my daily nosebleeds. I'm going to do everything I can to slow them down. Doctor did a breast exam and is pleased. My original tumor was 10 cm (I know, gigantic). He thinks I'm down to about 2com. He said I'm tolerating the most difficulty, toxic treatment really well. Of course than the blood tests results came in and they had to reduce my carbo. Oh well. I would really like the tumor gone by my surgery this summer.
And I am hoping to have a little break this round on side effects, but I came home and crashed so hard this aftenroon, despite the steroids. It could be because I woke up around 2:30am last night and never really got back to sleep. My hot flashes are starting to kick in already today too. My doctor told me to expect mood swings, and let them know if it gets bad. So much fun stuff comes along with chemo!
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"mmorigan - I think mine are all the same except for the first treament in terms of delivery."
For TCHP my place did a step down.
1st: 90 Min T, 60 Min C, 90 Min H, 60 Min P
2nd: 60 Min T, 60 Min C, 60 Min H, 60 Min P
3rd: 60 Min T, 60 Min C, 30 Min H, 30 Min P
I went from 5 hours to 3 for TCHP.
My place also cut my Benadryl down to zero with #3.
Now I only get Steroids before they start TCHP.
@Fab4Mom - How low were your platlettes? Mine were 92 and the one Dr suggested lowering my Carbo which she said was an unusually high dose but, my MO said to leave it.
She told me if it drops into the 80s they will lower the dose.
I'm so focused on just getting through Chemo that I don't want any delays but, like you I worry about lowering the Carbo dose
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Hi all. I hope you guys are feeling okay and making it through this unique situation. Just as a recap, I've had 4 AC rounds and 2 Taxol rounds. Thursday will be my #3 round of Taxol. I have to say that the first round of Taxol was rough. I was nauseous, tired, and had some really painful constipation. Round #2, I was tired on the weekend but on Monday I started to feel better. Yesterday, I was productive the entire day! That is the first time in 3 months that I have been able to do things around the house, home school my son, and work on my college homework! I feel good so far today too. This is making me hopeful that I will tolerate Taxol a lot better than I did the AC.
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dyonsphere, I’m glad you’re feeling better.
morrigan, the only time I had a longer infusion was the first Herceptin, which was 60 min. The other two infusions have been premeds-20min, Herceptin-30 min, Perjeta-30 min, 30 break to start Dignicap, Taxotere-60 min, 120 addl minutes for Dignicap. I asked if we could switch the order to dovetail bettter w the Dignicap. The answer was no. So pretty much five hours every time. If it works, it’s worth it.
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Interesting that each place does their own thing.
Dysonsphere - glad to hear you're doing better. I hope the Tackle treats you well going forward
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HI Everyone,
I'm glad to find a group of people to go through this with! Support is different in our Coronavirus world. I started dose dense AC on 2/20/2020 and have finished the four treatments. Today I start 12 weeks of Taxol. I will be icing my hands and feet during the 1-2 hour infusion to try to avoid neuropathy. A friend gave me a good method of taping 2 ziploc bags together to create a pouch in between for your hand (quart size) or foot (gallon size) and then filling with ice, preferably very small crushed ice like you can get from Sonic. She wore latex gloves covered with thin cotton gloves and athletic socks on her feet. Much better plan than offer from Chemo center for buckets of ice! I will let you know how it goes.
On hair loss: mine came out 2 weeks after first treatment. I had a "party" with some good girlfriends who surprised me by wearing scarf head wraps
(We all went out to eat dinner afterwards.) I had clippers on hand from cutting my sons hair in early years. We went through various silly haircuts until the final buzz. I went too short with that - not even 1/4 inch attachment; so I do recommend shaving but leave at least 1/2 inch so won't be stubbly!!! My wig was really uncomfortable at first, but is better now that the stubble is gone. Most of the time I just wear either soft knit cap, bandana, bandana with ball cap for walks, scarf for going out (rarely now) or nothing around house if its warm.Blessings to you all!
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Welcome Txmom3! It certainly does help to have people going through similar treatments at the same time. This corona world has certainly turned things upside down!
TCHPers- I also had the long infusion round 1, then they moved it to the standard length starting round 2. Interesting how different places do it. I’m currently awaiting the start of my round 4 at the infusion center. My anxiety was through the roof over the last week but seems to have leveled out. When my anxiety ramps up I can talk myself into a lot of things (Mets, other cancers, etc) and have a hard time staying off google. I need to work on it! Hope everyone is well. I will report back on SEs following this round, but I’m hopeful hearing from others that maybe this round won’t be too bad.
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"When my anxiety ramps up I can talk myself into a lot of things (Mets, other cancers, etc) and have a hard time staying off google."
That's me on my down days after the Chemo treatment, usually Sunday/Monday when I'm feeling my worst. Once I'm feeling better those thoughts seem to fade way, until the next round.
Just had my check up. My MO is sending me for my 3 month echo before #5. Says he doesn't expect anything but, he'd rather do it before #5 then right after since my WBC drop.
My Hemoglobin was low but, nothing to worry about still high enough that all I'm feeling is a little fatigue. Which to be honest I'm not that tired this time around, I've been exercising a lot more after #4 that I was able to do after #3.
My platelets rebounded, they are in the good range so nothing to worry about there. However, my WBC hit a new low. He told me to be OCD about washing my hands and avoiding people. I won't leave my house until I got for the echo which I'll try to schedule as close to #5 as possible.
He said I was handling the treatment very well, that by now most people are pretty worn down. I told him #3 hit me really hard but, #4 was mild. I asked what I could expect from #5. He said it's hard to tell, he hopes it goes like #4 but, it could be bad like #3, there's no standard.😥
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Hello. Joining a little late. I'm 45, three kids (8, 11, 13). Felt a lump (2+ cm) back in November, got biopsy results on Feb. 14th this year. Started chemo on February 25th. Surgery planned for June/July. No family history of breast cancer but genetic test revealed a PALB2 mutation, so I guess surgery will be a bi-lateral mastectomy.
- HER2+
- PALB2 mutation
- recovering from round 3
- TCHP and Neulasta every three weeks
Worst side effects so far were about 15 mouth sores after 1st round, despite religious mouth-washing. During 2nd and 3rd rounds I sucked on ice during the T & C and no mouth sores!!! I think it helped with taste/scalded mouth feeling too. (Now I'm also holding ice packs in my hands and putting my socked feet on ice packs as I've had sensitivity - but not neuropathy - issues on my palms and soles. I think it's helping that too.)But the worst... I mean the WORST... has been the constipation and practically impacted stools the few days after chemo. This has been horrendous and traumatic for me. Leading up to 3rd round I took stool softeners, hydrated, etc. before chemo and didn't take any Zofran pills (still had the Zofran thru port) but still... OMG. After 2nd round I was yelling and crying in the bathroom and eventually did an enema. 3rd round I tried to stay calm but difficulty passing stool lasted three days and was eventually helped by a suppository. (BTW, my Dr. says I should not do the enema or suppository because they don't want any trauma down there - but by that point there was plenty of trauma.) Once constipation has passed, I've learned to just pop an imoduim every day to head off the diarrhea, which lasts for the duration of the round. But I welcome the diarrhea over the constipation.
Anyone else dealing with this? I keep what I originally called my "cancer diary" but I joke that it's really become my "poop diary". I'm trying to figure out what to do leading up to round #4 - not eat, chug stool softners, skip the Zofran entirely (of course, the side effects for the chemo drugs all say "constipation" so who knows which is the culprit.)
I have a sense of humor - so have at it.
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TxMom3 - I also did 4 rounds of DD AC and had my third of four treatments of DD Taxol earlier this week. My doctor has had me take Glutamine powder to combat neuropathy - I mix 3 teaspoons in a cold drink twice a day - for a total of 30 grams. I have not done any icing and have no signs of neuropathy - I know that a lot of women have had success with icing - but thought I would share what is working for me.
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@micdpowers - im the exact opposite, I get constant diarrhea. The new meds help, I've cut down to 1 incident per day (so much better than 3-4) but, I've never been constipated.
I sat with ice mits (1-3) and socks (1-4). I ended up getting taxotere burn on my hands after round 3 so skipped the gloves with 4. I used ice chips with #2 and #3 but didn't find any change. I never had mouth sores just this dry/burning mouth thing. I will try chips again for round 5 to see if that helps.
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@micdpowers - I have the exact same problem. Constipated the first 5 or so days, and then switches to diarrhea that I can manage with immodium. I have some "trauma" this time around, and am already battling low platelets, so i'm doing everything possible to soothe down there. I've been taking senokot at night and drinking prune juice. THe first two rounds were worse with the constipation, but the repeated straining is taking a toll on my body.
Since I had a lower carboplatin, I was hoping for easier side effects. I think the nausea is a little better, but the fatigue is worse this time. There are moments i sit and I just fall asleep so fast. I managed 20 minutes on the treadmill today, but I definitely feel weak. I haven't seen my lab results, they usually post 24 hours after my appt, but nothing yet.
It's also snowing here in IL today, which is a major bummer. Being stuck inside with the kids, the side effects and the gray weather doesn't help with energy. But on the positive side, it's supposed to warm up to near 60 tomorrow.
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@micdpowers I’ve had some similar issues alternating between the C and the D...the C seemed to have gone away this round (4) which is good, but I know the D is going to hit about day 7-14. Imodium seems to help me. Also love your sense of humor!!
@Fab4mom I’m in MN and we had snow last weekend and earlier this week. Ugh. Finally getting some warmer weather and should get to 60 tomorrow! The sunshine definitely helps things, especially with kids at home.
So far my blood work has come back “good” every time, so my infusions have stayed the same. I’m hoping this means once I’m through these 6 rounds and only into the HP my immune system will rebound back in a decent time frame. We started planning for rads and then hormone treatment as well as I’m reaching the end of my 6 TCHP rounds. It’s overwhelming to think how long this treatment will be for me but I’m willing to do whatever I can to reduce reoccurrence
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@ajminn - has your MO talked to you about Kadcyla or the odds of pCR? Mine mentioned it in passing when I asked about Nyrlynx but hasn't really brought it up again.
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@morrigan I actually had a BMX first back on 1/6/2020 because all my biopsies could find was a large amount of DCIS. The invasive component was only found (1/3 sentinel nodes-none mixed in with my DCIS) on my post surgical pathology, which landed me the full chemo/rads/hormone tx. So unfortunately for me won’t really be a way to check that everything “worked” beyond no reoccurrence. I wish they would have been able to do chemo first to see how it responded, but I’m a strange case where nothing invasive could be found pre surgery and even post surgery only the one node was invasive. PET/CT before chemo came back all clear otherwise. I mentioned nerlynx to my MO last time but he said he doesn’t think he’d recommend it for me.
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ah, didn't realize you did surgery first. I'm hoping for a pCR I really don't want to spend a year on Chemo. I get the benefits and, that it's not as bad as TCHP but, I'm just so over feeling like crap most days I can't imagine doing this for another year.
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mmorigan - I'm also hoping for a complete response, but am worried about having to continue after surgery. I'm hoping these last three rounds knock it out all the way for both of us!
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I have been stalking this topic since I started chemo in Feb2020. I don't normally post items on the Internet. I have triple negative breast cancer. I have completed the bi-weekly AC and now on the weekly Taxol. Tomorrow will be the third session of Taxol with 10 more to go. I am having chemo first, then surgery. I am 57.
This past week I have been so depressed and scared. My husband does not seem to understand and keeps telling me to be positive. I am feeling right now that I have absolutely nothing to feel positive about. This is out of my norm, as I am usually a very optimistic woman.
My fear is that this tumour is not shrinking and chemo is not working. My husband keeps telling me that it feels like it is growing because I have lost 25 pounds since this ordeal and my breasts are a lot smaller. I come from a very small town and I have to travel 180 miles to the clinic so I am not able to just show up and talk to my doctor. With this lockdown, I have not been able to see any councilors, support groups. Etc. my only contact with humans right now is my husband. I feel so alone. I spend most my day crying
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Hi Tamijean
I know what you're going through it's hard to talk about your fears to others that aren't going through the same thing. They mean well and always try to be positive but, it is frustrating when you're explaining your fears and the answer is, "you can't think like that" or "worrying just makes it worse".
I've had my ups and downs since my DX, sometimes I'm really optimistic and others I'm planning my funeral. The added stress from COVID doesn't help at all.
Since you're going to the clinic tomorrow ask your Dr to check the tumor and, get their opinion. Also, check to see if there are any virtual support groups, the ones around me (monthly meetings) have just gone virtual due to COVID
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thank you Morrigan, it is nice knowing I am truly not alone.
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Tamijean- so sorry you’re feeling so down. As I’m sure you’ve read, many of us have had similar feelings throughout this journey. It’s so hard and isolating- especially now. I agree with Morrigan, people mean well but sometime they just don’t understand. It’s hard to put into words the fear we have and I for one can let that fear take complete control, which isn’t good. I find getting myself outside for even a little bit seems to help (when it’s nice out...). I agree with Morrigan again on getting your MO’s opinion on how you’re responding to treatment and seeing what kind of resources they can connect you to. There’s a lot of teletherapy/virtual support happening at many offices. While it’s not my favorite method it does help to connect somehow with others in a similar boat.
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tamijean - welcome, i'm glad you joined us. I think reaching out to your MO is a great idea. I often go between feeling confident that I have this, to despair that I'm 43 and battling cancer, it's still like it's not real. I hate thinking of the long term ramifications of having aggressive breast cancer at 43. I really try to take it one day at a time, because there is only so much I can control. I try not to focus on the "what ifs", but rather the right now.
Anyone else so sick of the chemo taste changes? I'm on the 4th round of TCHP, and it's been a lot easier on me due to reduced Carboplatin. But the bad tastebuds and weird feeling in my mouth is so old. I'm so looking forward to food tasting right again this summer. I never really realized how important enjoying my food is to me. I know when this chemo is over, I'd like to focus on eating a healthy diet for cancer, but I also think I'm going to spend more time eating food that brings me pleasure, and less worry about my weight, at least for awhile, because I miss food.
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"Anyone else so sick of the chemo taste changes? I'm on the 4th round of TCHP, and it's been a lot easier on me due to reduced Carboplatin. But the bad tastebuds and weird feeling in my mouth is so old. I'm so looking forward to food tasting right again this summer."
I'm so over it. I hate that all the things i love taste wrong, ketchup, peanut butter, tomato sauce, salad dressing, etc
It's also changing now, at first everything was bitter and salty, so i stopped cooking with salt. Now I'll make mashed or baked potatoes and, I'm like this needs salt but, I'm afraid to add even a little bit.
I've made changes to my diet to try and eat healthier. I've cut out red meat, I'm eating more fish (shellfish, I hate fish fish), veggies and fruit. I've switched to whole wheat/whole grain products, even started eating brown rice pasta. I tried switching to Almond Milk but it's not great. I gave up and went to Fat Free Organic milk which tastes fine to me. I wasn't much of a drinker so cutting out alcohol isn't a big deal.
That being said, I know I will at some point over the summer break down and, eat all my favorite (unhealthy) foods, I have a mental list of things I will eat once I can taste.
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Fab4mom, I thoroughly agree with you. I miss my tastebuds!!!
Tomorrow will be my fourth and last treatment of TC, thank God. I am so excited It makes the week of yucky days bearable.
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woohoo! Congrats Craftylife on hitting your final Chemo treatment
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Yay Craftylife!! Congrats on the last TC!!
I also agree with many of you. I want my taste buds back. Everything is metal tasting. My husband is a big foodie and everything just tastes blah to me. I usually love craft beers here and there, especially in the warmer months, but I don’t drink at all right now because I know it would taste bad to me and it wouldn’t feel good for my body during treatment
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How is everyone doing with chemo brain? I had taken my son to daycare and tried to check in for my follow up appointment just to realize that I was a day early. So yeah.
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