Starting Chemo December 2020

rjkissner

I did not see any threads for starting chemo in December 2020 so I started one. I begin my chemo Dec 1. I will be having 4 rounds (every 2 weeks) dose dense AC, followed by 12 weekly rounds Taxol. I was told after my mammo/ultrasound by the radiologist that he is certain it is cancer, and officially received the news after biopsy pathology report shortly afterwards. Right breast, IDC, grade 3, axilla lymph node involvement, triple negative (negative hormone receptors, negative HER2), stage 3, I am awaiting PET scan results to see if it has spread to other areas of the body, While I am trying to remain hopeful that it has not spread, my lymph node was so full of cancer it was larger than the 3cm mass on my breast...according to the ultrasound.

I am thankful to have this forum to research, my oncologist did not prepare me for what is to come with my first chemo infusion. Due to Covid I will be unable to bring someone with me and well, this is scary and a bit overwhelming at times. I am 54. I have felt fine except for the fact that I have been fatigued for what feels like months now.

I hope to see more join this thread but notice that the last few months starting chemo threads do not have many participants. Would love to meet others that are at the same stage in the process so that we can lean on each other during this journey.

Thank you to all who took the time to read this and please feel free to join in the conversation.

Melbo

good luck with your chemo! I just had my last round of TCHP last week. In my experience it was often uncomfortable and unpleasant, but it was also tolerable. Be sure to call your doctor or nurse helpline for any side effects because there is a strong chance they will know something that will help

rjkissner

Thank you Melbo! I see you have found the light at the end of the chemo tunnel...I can't wait till the day I get to say I had my last chemo treatment. I do fear the side effects and I am sure reading about what others have went through does not help the anxiety, but I would rather prepare for the worst and be pleasantly surprised that it wasn't as bad as I expected.

So now that you are finished with chemo, whats next for you if you don't mind me asking?

Poppy_90

RJ—I always feel a special connection when I see a fellow triple negative. I just want to jump and tell you what my MO shared with me when I was so scared of starting chemo. She told me two things. The first was to forget everything you’ve seen in movies. Yes, chemo, isn’t fun but remember that Hollywood isn’t known for reality. The second thing, any pain, nausea or side effects...don’t ever let yourself suffer. Call your doctor no matter the time of day. There are meds to help you through. Her philosophy was that nobody should ever suffer when there’s a medical solution. And don’t be afraid to keep trying until you find the right med for you. It took quite a few tries for me to get the right combo. But we found it and it helped immensely. ust thought I would share, because both of those things really helped me. First chemo is scary. I remember every detail of the drive there. But, the nurses are amazing and will get you through. I’m a newbie here, just finished chemo inSeptember. But there’s so much good information here. And a lot of amazing women who will support you.

rjkissner

Kristen, thank you for your reply. TNBC scared the heck out of me, mostly because each step of the way to diagnosis I was told lets hope it is hormone positive, then the result was negative, then told there is still hope that it will be Her2 positive, then results back that it was negative as well. Arghhhhh. I am still learning about it and what it all means in the long term. I see you made it through your chemo and had a lumpectomy. I was told I would need a mastectomy and lymph node removal after chemo, then radiation. So you started Rads this month, how are you handling that? I am a bit scared of that as well, but its so far away I will not worry about that till its time to cross that bridge I guess.

Thanks also for your input on the side effects. I certainly hope my team of experts feel the same as your about battling the side effects and help me deal with it along the way. I am one that would rarely take medication, even aspirin, so it sounds like I will be pumping all kinds of stuff through my system, one to kill the cancer, others to combat the effects. I am not one to suffer in silence (just ask my dear husband) so I will be sure and ask for something if the need arises, just hope I can keep up with what is what and when to take :-)

Sending warm wishes of continued healing to you.

Melbo

I will have surgery on 21 December and start radiation probably in February. I also have infusions of herceptin and Perjeta every three weeks since my cancer is HER2+.

My other big advice for chemo is make sure you hydrate really well before infusions. It can be really tough to get enough water when drinking sounds terrible and nothing tastes good, but staying hydrated makes a huge difference. I was poorly hydrated before my 4th round and it was absolutely miserable. I made sure to keep up with my water before rounds 5 and 6 and the side effects were much more manageable

hopeful2020

Hello, I will start TCHP for Triple Positive BC on Dec 2nd. First 4.5 months will be the 4 drugs followed by Herceptin upto 1 year.

There is a medication almost for all known side effects that I have been given. So will have to see how best to navigate through this after the 1st one. My care team (and some of the wonderful ladies in this community) have me prepared quite well, so hoping to get through this well!

rjkissner

Hopeful, thank you for chiming in, it's nice to meet you, though I wish it were under better circumstances. Sounds like your team has you well prepared for what is to come. I was not given anything in advance, not even a talk about what to expect...or what the possible side effects will be. I am hopeful that I get all that I need after my first infusion on 12/1. I know I meet again with my MO right before treatment to hear the news as to whether the cancer has spread anywhere else. I guess I should have asked some questions, but upon hearing all the news the mind kind of went blank after that.

Please do keep in touch during treatments to check on each other. I am hoping that all goes well with as little side effects as possible for each of us.

rjkissner

Hopeful, how did your first chemo go yesterday? My first was the day before yours and I am sorry to have not posted an update, its been hard trying to get a new routine going.

Here's my experience: The infusions went well and I even went to Walmart afterwards to get some grocery shopping in, stocking up on soups and things I hoped would be easy on the stomach. Everything was fine till about 6pm when nausea kicked in. I was not expecting to have any nausea just yet because I was told there was medicine in my premeds they gave me before the chemo that should last about 3 days. I waited till about 7 and took some nausea medication they prescribed for me and it was not till about 11:30 pm before it subsided. It was the worst, I hate throwing up but at times wish I had just to get it over with, but fought it off all them hours. Needless to say, since then, I take nausea medicine as soon as I can according to dosing instructions because I don't want that feeling again.

I am tired a lot, probably due to the nausea medication but that is ok, I am able to sleep when I want so I just nap on and off as needed. I am thankful at this time that I am not working, I am not sure I could do that right now. My husband has been a gem and is taking very good care of my every need. I have to go get my generic version of Neulasta shot today, have been taking Clariton for the possible bone pain, hoping that helps keep it at bay.

Baby steps is what I call it. I have all kinds of things my mind wants me to do, but my body is not wanting to play along. I am hoping that on my way home from the doctors office today I can go into Walmart and pick up some knitting supplies and see if I can't relearn how to knit myself some caps for my head. I am getting ready to cut my hair off, its about 5 inches past my shoulders and too tired to take care of it while waiting for it to fall out anyway... Maybe I will snap a picture and post my before photo as a momento of what used to be in my next post.

Oh, and I almost forgot, the best news of all for me before my first infusion was learning that my PET scan results showed that this cancer has not spread anywhere else, just the breast and my axilla lymph node. So I am stage 3C. I feared the worst and was pleasantly surprised and feel very blessed that even though we caught the cancer in late stages, it has not spread beyond yet! Praise God for that!

I hope things are going well for you Hopeful, please do stay in touch as you are able to.

hopeful2020

rjkissner - My chemo was a better experience than I thought it would be. They have a free meal from an outside agency on day of chemo and free acupuncture and massage service if needed while I get chemo (which I am planning on trying next time as I didn't have any reason for yesterday). They did allow my husband to stay with me in the room yesterday just because it was the first one and a long day. So he got the meals for him and me. I ended up working through the infusions except when Taxotere was administered as I had to ice my hands and feet (they gave me the mittens). So working kept me from thinking too much on what's going on and looking for any symptoms honestly. They did give me 1 anti-nausea meds and 1 dexmethasone shot and 1 anti-nausea by IV prior to administering the Taxotere and Carboplatin. She said it should take me through 5 days. I am taking 1 dose Claritin (1 day before and 5 days thereafter) and 2 doses Dexamethsone since day before, day off (except they gave me the second dose) and day after chemo. MO said if I felt nauseous at all, to take the meds and wait for 15 min and try eating as it should work almost immediately. It will be more like my pregnancy issues where empty stomach makes me nauseaus. They gave me 2 types of anti-nausea meds (Composine and Zofranx?). Told me to try whatever worked best if needed. Today didn't need it. I did continue to work today without issues.

They gave me the Neulasta shot yesterday. Another 2 more hours for it to come off. I must say it is one of the coolest things though. I had it put on my arm.

Side effects so far; Last night I just couldn't sleep past 1:30 pm but that may be due to some other work related issues that I kept ruminating on or the steroids. So today I'm going to take the melatonin and see how I fare. Other than that, my fingers did feel a bit stiff which went away with the typing but my legs are stiff and I think that might be due to me sitting all day at work. Going to try and walk and see if it relaxes out. At work I have a sit stand desk so I need to find something like that at home since I will be WFH for next 6 months. My stomach did feel bloated yesterday and today a bit full. Also doing the Biotene mouth wash since yesterday. I am trying to eat not too heavy foods that might require additional digestion capabilities :-)

Great news on the PET scan! Are you 3C because you had more than 4 nodes positive? Seems like your tumor size is small? I had surgery first and so I am not sure how they will find out the chemo effect!

Do stay in touch as well. I am told side effects start kicking in about 3 days after. Drinking lots of water and eating some little bites of food through the day is helping. MO said to try other fluids besides just water as well. Keep your mind occupied with something else besides what's happening with Chemo - it really helps.

Momscaregiver7

hi everyone,

This forum is providing so much information. I really appreciate everyone’s time and effort. My mom was diagnosed with Stage 2 Triple Negative breast cancer in November 30. I didn’t even know what that was until today and now I’m bawling reading all of these forums. All of these regrets of not being able to spend more time with her, not being able to be more compassionate with her and etc is really getting to my head.

She starts neoadjuvant therapy - she’s getting her port in on December 17th. The doctor did sa none of her lymph nodes are affected and it tumor is localized.

to the moms out here, any advice to what a daughter can do? I’m not good with expressing feelings with words and even action. We’re a pretty stoic family. All these thoughts. Never done a family pic so I was thinking of Getting a family picture in before her chemo. We haven’t done any family vacation so maybe it’s a good idea to do a small local weekend getaway. Do you think she’ll be depressed of her hair falling out? How did everyone feel about their hair falling out? Shall we go wig shopping?

How long does it take to recover from neoadjuvant therapy? Anyone has experience with scalp cooling therapy for preventing hair loss during chemo? It sounds like a lot of money but I would do anything to make her less stressed. My mom is a little frail to begin with. She’s about 107-113 pounds. Does anyone have any suggestions on how to strengthen her immunity and stamina prior to chemo?

Sorry my post is just random rants - I’m just feeling a little alone because my mom does not know the extent of this particular cancer (English is her 2nd language so ended up all the information first) she just knows that she has breast cancer and has to go to chemo and possible mastectomy. I am very hesitant to tell her

please do not feel pressured to answer all of my questions. I’m sure after more research on this forum I’d be able to find. To all the women out there: you guys have such wonderful and strong souls. Thank you for listening to me

hopeful2020

Momscaregiver - So sorry to hear about your mother. The one thing I would want my caregiver to be is strong and help me through the process. I just started chemo last week and folks here have been pretty helpful in navigating me through the side effects.

I did get the wigs ready as I was so paranoid about the hair loss. I haven't lost hair yet but getting prepared. I decided against the cool cap as I want to spend as minimum time in chemo as possible.

Nutrition is quite important and there are sources you could probably request on what to eat during chemo from the social worker in your oncologists office. Mine shared a lot of things that would be useful to me including meals, wigs, nutrition, yoga classes,, groups, meditations.

Until treatmemr starts there are too many uncertainties that will come by. Stay informed.

rjkissner

Momscaregiver, I am so sorry to hear about your moms diagnosis. It sounds as if you are doing just what you need to be doing for her, this forum is a great outlet for information, learning from others, and can be a great place to go to just vent if needed.

The hair thing is personal and hard to answer. Personally, I am not worried about the loss of my hair. I actually shaved it over 18 years ago while my son was sent overseas post 911. Yes, it was a kind of bizarre thing to do but know the reaction on his face when he seen the picture was worth it, besides, it is only hair to me. It always grows back. My daughter is flying here from CA in a couple weeks (haven't seen her for over a year) and we are going to make it an event with her cutting my hair off, since it should begin falling out about that time anyway. I already bought a wig, though most of the time I plan on just wearing a cap to keep my head warm. I do not know much about the cold capping thing to help save hair other than it can be quite a pain in the butt, but people who try it felt it was worth the time and effort.

Love the idea of a family picture, and bet your mom would too! Wish my kids would do that for me but they are scattered all over the place and hard to get them all at the same place at the same time...

As for how well you mom handles the chemo, that varies so much person to person and what type and how often it is administered. Do know that the doctors and cancer team work very hard to make it as comfortable as possible for everyone and keep them as healthy as possible. If there are any problems do not hesitate to tell your doctor and they will work with you to find something that works best for your mom.

Hopeful, sorry it took me a bit to respond to you. Originally my MO staged me at stage 3, once the PET scan results came in he staged me at 3C. It does appear my tumor is small (little bigger than 3cm) when you look at the dimensions, but perhaps it is because my axilla lymph node was so swollen with cancer that it was even bigger than the breast tumor. He did not see any cancer in any of the other lymph nodes from the scan.

One week update after first infusion...I am feeling better than I imagined I would. Most common problem was nausea which the medicine seems to keep under control. I am down to only taking a nausea pill in the morning and maybe one before bed, feeling pretty good most of the time though. I am dealing with some constipation which I am taking something for, hoping that eases up as time goes on. Still have a pretty good appetite, and trying my hardest to keep up with my hydration (which will also ease the constipation I KNOW!).

I hope this finds everyone well, do keep in touch.

Momscaregiver7

Hopeful2020, i will def ask the social workers regarding nutrition. I'm so new to this that i didnt even think about doing that. I really appreciate your time. Good luck on your chemo! i would love to hear about your updates. I'll be rooting you on

rjkissner, Covid-19 really doesnt make it any better with the traveling. It sounds like a very heartwarming intimate event with your daughter cutting your hair. I think that'd be a great bonding time i should consider too! I will also be rooting on your journey!

hopeful2020

Rjkissner - nausea started setting in yesterday. Taking meds but big D has been an issue. I want to eat but worried about the D and so limiting. I do have the apetite. But taste buds are shot.. water is worst tasting. hoping things will improve soon.

rjkissner

It's been a long time since I have posted here, checking in on everyone to see how their chemo is going. I am finally done with AC which really kicked my but and am now getting ready for my 6th out of 12 weekly Taxol treatments. Thankful that the Taxol has been much easier on me. Hoping and praying that everyone is doing well, please keep in touch.

MochiPie

I am done! The end was more emotional than I had expected. I baked muffins for the nurses and they all signed a card for me. I was mesmerized watching the final 20 minutes of the taxol drip. I think I wasn't allowing myself to accept how hard it all was, even though I did tolerate it well and it was "chemo lite." It was still hard. I won't really feel like I'm done-done until I pass the date when my next appointment would have been.

rjkissner

MochiPie, I am so excited for you to be done with chemo. There are times I feel I will never reach the end, but then here I sit and say only 7 more treatments to go. Here is to hoping for a brighter future for us all.