July 2020 chemo club
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I actually don't believe most people can tell if you're wearing a wig or not, so no need to feel self conscious! You are hyper aware of it because YOU know, but most people just don't pay that much attention! So wear those wigs proudly, ladies ❤
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Hi Everyone,
I just made the cutoff, my first treatment was on July 30th. I am in a clinical trial, starting with 12 weeks Taxol as well as Herceptin and Perjeta. I have had a major issue with headaches and brain fog since my first infusion. It felt very similar to how I felt after getting a concussion. I was so out of it on Saturday I couldn’t drive. I was mixing words, dizzy, slow moving, zombie like. I was prepared for the physical but I wasn’t expecting to be so mentally confused and disconnected. Has anyone else experienced this?
Thankfully it lifted last night. Nervous for it to start back up after my next treatment
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Gryffy38 - I was like you...definitely not prepared for the brain fog, mental fatigue, whatever you call it. Today (Day 4 AC) has been tough on me. Managed to work on a simple puzzle LOL! I don’t know if it is my chemo or if it’s the Dexamethasone? Or both?
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Hi all,
I started AC on the 28th and I'm on to day 5. The physical stuff hasn't been so bad, but I'm so fatigued, it's like I'm drunk. Foggy/dizzy that sort of thing. I can't concentrate on much of anything. Is this just AC chemo life? How out of it is bad? I can get up, walk around, do sort of regular things. But not much else. I can barely concentrate on a tv show i'm watching.
Thanks.
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susanweinschenk and BlusteryDay: So glad to hear I am not alone in this drunk feeling/brain fog. It is very disorienting. I meet with my onc. on Thursday before my second infusion, going to see if I can do anything to help this. May just have to embrace it and ride the waves of confusion. Bleh.
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The brain fog, dizziness, etc is real! I don’t drive...and concentrating is so hard. I thought I would read a lot, do some knitting, have some little projects to get done during this, but my mind just can’t do anything... Getting myself up and little daily chores are about all I can handle. Lots of rest and sleep seem to help me as it’s not as bad during my second round...but definitely still there!
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I received my results for genetic testing back today - totally negative! Makes me feel better knowing I'm not predisposed to any other cancers (that they know of) and don't have to worry about removing my ovaries or anything like that.
I have another appointment with the breast surgeon on Thursday. When I was first diagnosed I was positive I wanted I just wanted a double mastectomy. Now I'm not so sure. Has anyone started thinking about surgery yet? What helped you decide? If the double mastectomy saves me from radiation I would go that way, but I know it depends on my pathology and there's no way to know until its already said and done.
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smichaels...
My genetic testing came back negative for now, there’s 2 VUS in a BRCA and another (I can’t remember what it’s called) but they said at this time it shows no recommendation for further surgery. Which I’m relieved it’s negative, but still means they do not know why I have the aggressive type of cancer that I have. Because of that, after spending a lot of time thinking about it and discussing with my husband, taking my age into account, I’m going to get a double mastectomy. My surgeon said right off the bat, I probably wasn’t going to be a candidate for a lumpectomy, because of the size of 2 tumors...but he didn’t rule it out. I just don’t want to chance this stuff being able to spread at all. Also, I only want to go through this one time. If getting them both removed means I get brand new boobs, no mammograms, and no chance of breast cancer in the other boob later in life, sign me up. My oncologist also expressed that was a very smart decision based off of everything. So as long as insurance is ok with it, so am I.
I also maybe found some relief into everything you put in your mouth tastes like complete crap... I actually made an appointment for the morning to go in and get some fluids at my infusion center. I know I’m dehydrated, I’m not hardly drinking anything...water makes me nauseous and I can only handle so much Gatorade. This afternoon I was told (by my loving husband) that our ice machine in our fridge does crushed ice. So I filled a glass full of crushed ice, added water, and a big slice of lemon...drinking it with a straw, and it truly tastes like heaven. I love water so much, I get cranky when I haven’t had enough...
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mtspacekace good to know it isn’t as bad for you second round I have my second round Thursday, fingers crossed for a mentally stable weekend 😂
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This is mot meant to be medical advice as far as surgery but I was told that a mastectomy vs lumpectomy are the same as far as survival rates. Also was told that a mastectomy cannot remove all breast tissue. About 5% remains. So I am struggling with what to do also. I assumed a mastectomy took care of future breast cancers but it does not necessarily. My surgeon wants to to do a lumpectomy and breast reduction ( I have been well endowed by my creator😁) in both breasts if this neo adjuvant chemotherapy is successful. Thoughts??
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I just went through 22 hours of hell. I told my husband last night that I refuse to go further with chemo, until my neurologist is on board and can manage my migraines. I’ve been under my neurologist’s care for 14 years and when he saw me this morning he was in shock, back in a April I looked healthy... and now I just, don’t. He said my migraines are most likely being triggered by the AC, based off timing and symptoms, so he switched up my meds and offered to admit me after my next round for migraine management, if needed. I feel better already just on the new meds.
It is crazy how the tingling in my hands, feet and mouth start, then the chemical taste in my mouth... and then the searing/blinding pain in my left eye that radiates to my whole head. Last time it happened on day 8, this time it was day 5.
Anyone else have migraines?
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BlusteryDay...oh I am so sorry you have to go through those migraines. I have never experienced one so I can't be of any help but to tell you that you will be in my prayers when I have my treatment tomorrow. Glad your neurologist helped you out somewhat. Do you experience all the tingling and pain during treatment or does it happen later? A Prayer today for pain relief.
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IamLoved,
The tingling started just before the migraine hit...so I’m wondering if it’s the chemo making its way to certain “levels” in my body? I’m not doing cryotherapy (gloves and socks) for AC because my MO said it isn’t necessary until I get to Taxol. Now, I’m beginning to wonder. My skin on my head and face get so sensitive that I can’t even stand the breeze from the ceiling fan blowing ...out A/C Bill is going to be horrendous!
I literally kept waking up last night and doing neuro checks on myself (I’m an old ICU RN) because I thought I might be having a hemorrhagic stroke...it was literally the worst headache I’ve ever experienced.
Aside from the headache... the awful taste in my mouth...like I’ve been drinking pesticide! I can’t scroll up to see who to thank,who recommended iced lemon water....but thank you.
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Oh, I am SO sorry to hear about the migraines! They are the worst. I hope your docs are better able to manage them next time. I wonder if it’s worth dragging yourself back to your infusion center to request that they draw a blood chem panel during a migraine (not fun, I know) to see if maybe your magnesium or potassium or anything is out of whack? If you have to be admitted, then your neuro will probably think to order that, of course. I hope it is much better next round.
Regarding lumpectomy vs mastectomy, my surgeon told me the best surgery is no surgery and the next best surgery is the least surgery (kind of an unusual philosophy among surgeons!). My genetics came back negative too, and my lump (which I can already barely feel after one round! Amazing!) is way on the side, basically under my arm, so it should be a very simple surgery that probably won’t greatly affect my breast shape. For me, one thing that really worried me about double mastectomy was the impact it would have on sex. Not a concern everyone shares, I understand, and something I could adjust to. My other worry was the stress and difficulty of recovery with a one-year-old toddling around. I know the recovery isn’t forever and the risk reduction is, so that wasn’t a huge consideration but it was something the worried me. Honestly, I don't think there's a wrong decision, and I will talk to my surgeon again to get his thoughts on double mastectomy, and to my MO about the risk reduction aspect, before I decide.
I’m finding myself nervous about my second round next week. My SEs were cruddy but totally manageable the first round, but I guess I’m just scared that the faster infusions will cause a problem or that the effects will be cumulative or something. Ugh. Can’t wait to be done, at least with chemo, in November!!! That seems so far away! Just trying to focus on the fact that as much as they suck, I know these drugs are working
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Oh, BlusteryDay, the hellish misery of migraines AND chemo side effects...I am sorry to read you are going through that.
The AC chemo treatment you are receiving can cause severe headaches and sometimes reducing the speed of the infusion helps prevent this. I know migraines are worse than regular headaches, but I wonder if that would help with the migraines, too.
Regarding the face sensitivity: I used cheap Dollarama jade rollers chilled in the refrigerator. The first one was miserable because the slightest touch to the skin was painful, but after a few seconds I noticed relief.
I hope your neurologist can help you!
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Iamloved, wishing you all the best tomorrow with your second infusion.
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AnnaTheBrave, a reduction in your tumor after only one infusion. That’s awesome!
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Hello everyone- glad I found this thread. I started my first chemo cycle on 7/24. Hope I can join in on here
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Hello, NotToday, and welcome! There happen to be a number of us 30-somethings with similar diagnoses in this group. I hope you are feeling well. I am also doing TCHP You and I are one day apart for our treatment cycles.
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Hi ladies! I hope you don't mind if I hop back over to this thread. I started an August thread but I'm the only one so far. Some of you reached out to me on that thread wishing me well on my first infusion this past Monday - thank you so much! I am on Day 4 and honestly have felt pretty good. I was super sleepy on Day 1 but also had my port installed early that morning which meant I was up at 4 am. Day 2 had great energy and appetite, and was able to get in a full day's work. Yesterday and today I've had some achiness both from my port and probably from the Neulasta but nothing unmanageable. Knock on wood but no nausea yet. I'm taking Zyprexa for nausea prevention and Claritin for SEs of Neulasta.
I hope everyone here is doing well. I'm so sorry to hear about some of the debilitating SEs especially with migraines. I hope the doctors can figure things out for you.
Anyone else not having any significant SEs at Day 4 (and hopefully beyond)? I almost feel guilty about it.
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Hello everyone! I am day eight from my second TCHP infusion. I am feeling bummed out about my symptoms this round. I felt like they resolved faster last time. I am having fatigue, diarrhea and a continued mild nausea. It is just enough to make me feel bleh and not want to eat, but I am hesitant to take medication as it makes me feel foggy and I am continuing to work full time from home. I am really hoping the next few days I turn the corner. I am noticing the fatigue more, I really have to pace my activities. I am a morning person and before this would roll out of bed at 5 and run 3 miles. Now I am learning I have to start my day very slowly, especially with the low grade nausea. ugh. Some days it seems like this will be such a long haul.. this is one of them!
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For whatever it’s worth, my first round of TCHP I felt my worst on days 7-8 and felt much better on day 9 and felt really great after that. Britton, I hope your SEs stay at bay, and TrynRyan, I hope you recover quickly!
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Welcome Nottoday and Britton! This is a very active and supportive group
I had my second appointment with the breast surgeon today. I have to say, her bedside manner is SO much better than my oncologist. I like my onco as well, don't get me wrong, but my BS just puts me at ease. My tumor has shrunk SO much - Almost 75%! She thinks I will have a complete response to chemo. Fingers crossed!
We talked about lumpectomy vs. BMX. Ugh, I am really on the fence about this. With lumpectomy and radiation, the risk of local reoccurence is about 5%, where it's about 1-2% with the BMX. There is also no guarantee that I won't have radiation with BMX, which would mean I could risk having to have tissue expanders under the muscle instead of direct to implant over the muscle that I would rather have. And the scary part is they won't know until I'm already under and it's too late. Reading the boards on this site, it seems that the majority of people opt for BMX. This decision is so tough!!
I have felt back to "normal" for the past few days. My 3rd infusion is next Wednesday and I am dreading it but know it'll be one step closer to completing this step in the process.
I am so sorry about this migraines, Blustery. I hope that gets sorted out soon and does not delay your treatment.
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I finally start my chemo tomorrow -- I go in at 0530 to get my port put in and they will wheel me over to the chemo suite after that. I've been reading your posts to help give me a better idea of what to expect, but of course each reaction is different so I really won't know until I go through it myself. Tonight is going to be really stressful. But at least I had sushi today since I won't be having that again for a while.
SMichaels -- I hear you about the surgery decision. I go back and forth constantly about which is the better option. Today I'm leaning towards lumpectomy because of the "less surgery is better" philosophy. Who knows how I will feel tomorrow, much less in the next few months.
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Thought I’d post a little more about my SEs since I know some folks are reading to get more of a sense of what’s ahead, at least with TCHP. If you’re already in the thick of it, my apologies as this will be long and boring!
I felt basically fine days 1-3. The steroids really help, I think, although I recommend taking your PM doses around 4 rather than at dinner or bed so you have less trouble sleeping. Started to have cramps and diarrhea on day 4, but it was only once a day and managed well by Imodium, and otherwise I felt tired but pretty normal. Took zofran a few times days 4-8 and it helped with just feeling blah. Felt like I had something stuck in my throat as well, which made even water uncomfortable to drink, but switching heartburn meds helped a lot. I was a nut about staying hydrated, and I think that helped everything. Felt pretty lousy days 7-8, like I was getting a sinus infection. Tired, achy, congested, low appetite. Not in bed all day by any means, just cranky and crummy. Started to feel better day 9. Diarrhea stopped day 10. Felt so good on day 13 that I had a margarita with dinner and am pretty sure that’s what sent me racing back to the bathroom all through that night. Bummer.
My mouth felt scaly and my tastebuds changed around day 4 as well, and the scaliness peaked around day 8 and then gradually faded until I noticed it was totally gone on day 13, but the taste changes have continued (and my MO said they will likely last through treatment).
My scalp got really itchy and oily and sore around days 5-7, but then everything felt back to normal. I’m on day 16 and my hair has not begun to thin yet. (I’m not cold capping.)
My hands and feet felt a little numb days 10-11 but I’m not entirely sure I wasn’t imagining it...so I’ll take better notes next round.
I got hydration via my port on days 9 and 13. Had bloodwork on day 9 and it was all within normal ranges (except WBC, which was high, as expected, due to neulasta). I didn’t need hydration but it seems to be my MO’s practice to hydrate the hell out of everyone! I’ll take it!
Good luck to all who are starting! The best reassurance I read before I started was from a woman on another board who said it isn’t a picnic but that it wasn’t nearly as bad as she’d imagined. That has absolutely been my experience. There are sooooo many things that your doctors and nurses can offer or suggest to help manage your SEs, so my other advice is to speak up early and often if you are having a hard time staying hydrated, feeling hopeless, have a weird or annoying SE that isn’t already being treated (or isn’t treated to your satisfaction), or are unable to carry on most days with a fairly reasonable approximation of your normal life! Oh, and I have found the infusion nurses to be pretty brilliant. They are real fonts of wisdom and I love talking with them. They have great ideas and advice. And the last thing is to take anti-anxiety medications as needed. They help with sleep, which helps with everything.
We’ve got you! You‘ave got this!
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Is anyone having problems with sore gums? I'm on day 9 from first infusion. i'm using a prescription toothpaste my dentist recommended (prevident -- high fluoride), i'm doing the biotene dry mouth rinse, and the kefir mouth rinse. i'm flossing very gently with unwaxed floss. I don't have any sores or bleeding, but my gums look red and they ache. Maybe is because of citrus in food I am eating? Anyone having this problem? Any ideas?
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Hey Ladies I want to create a roll call in the initial post so we can all see who is here and when you started treatment and what that treatment is. If you can pm me I will edit the original post as messages come in. If you wish you real first name to be listed please include that. My hope is we can quickly see where everyone is in their treatment and who has a treatment regime like others.
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Okay ladies here is my experience today at my second infusion. Started off fasting Tuesday around 11 so that I would be at 48 hours when the chemo started. We left at 6:30 a.m. this morning to travel the two and a half hours to the infusion center. We met with my oncologist first and we discussed the Big D issue I've been having. She agreed to take the perjeta out of the mix for this infusion. If it helps with the Big D then we will look at lowering the dose at the next infusion. I have not wanted to jinx my results so I have been trying to avoid the tumor but when she examined me today I told her that I thought it had shrunk. So she did her exam and stopped and went and looked at her computer and came back and said I really can't feel it. Woohoo! She said that this was the most remarkable response she has seen in her practice. Just as a reminder my tumor or tumors were over 7 cm. She kept feeling and was truly amazed. She thanked me for choosing to do the chemotherapy because it appears to be working so well. You can imagine my excitement and my quick thanks to our creator. It certainly made today's treatment almost joyful! I am also following the care oncology protocol which I believe is contributing to the success that appears I may have.
As far as the treatment itself accessing my port was a piece of cake. I could not have had a nicer RN in the infusion center. I finished up with all the pre meds and the Therapies in about 4 hours. I treated myself to an iced Americano with heavy whipping cream at Starbucks. A bit of a fasting mimicking treat. Plan to not eat until tomorrow at lunch time. I want to give my body the best chance to heal itself.
I am too lazy to scroll back to see who recommended the freezing mittens and slippers with ice packs from Amazon. Whoever that was thank you, that was so much easier then my plan. I am going to order more extra ice packs. I did order four extras but because the taxotere runs for an hour, I want one more extra set
Now I wait for SEs. Going to work on hydration and get ready for whatever this round throws at me. I hope this post inspires all to be the STORM In cancer's path!🤗🙏🤗
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So I've been away for a week and missed soo much in the group!
Welcome to all the new folks, I hope your journey is not too hard and that this group helps.
Regarding the discussion about DMX/BMX or lumpectomy, I totally understand that it is very personal. For me, it wasn't really a hard choice. If I have BRCA or other genetic predisposition, I would have gone with DMX, but with a single tumor, no family history, and being only 40yo, I didn't see a reason to have a larger surgery than needed. I felt like DMX is always an option if anything goes wrong, so I can go that route in the future (hopefully I won't need it).
I'm looking at some of your Dx and wondering why you went with chemo first (neo-antigen therapy) and not with surgery first (chemo as adjuvant therapy). I'm curious to understand the reasoning behind this (it's the cancer biologist in me). My MO and surgeon both recommended lumpectomy first, which is what we did, and I will need another surgery after chemo to remove one bit of unclear margin they found in pathology. So I'm having chemo without an actual tumor to treat, just to kill off any cells circulating in my body or left behind.
@blusteryday I'm sorry about those migraines. Sounds terrible. I don't normally suffer of migraine, but my mom and aunt do, and they told me the way I describe the chemo related headache sound totally like a migraine. Could it be the nuelasta and not the chemo? I wish I had some advice to give.
@susanweinsc I think sore gums are part of the whole dry mouth thing. I have that a little. I've been rinsing twice a day with dry mouth betene mouth wash and it's better than last time. Mostly I feel like I have a film of something all over my mouth. Yuck.
@Iamloved Are you full fasting? because I saw reseach on fasting-mimicing and was considering it, but full fasting sounds too hard.
Here's what I've been upto - Got my 2nd TC on Friday, first 2 days felt pretty normal. Day 3-4 were again the challenging ones, achy, tired, didn't sleep well, stomach getting tender, taste buds bidding me farewell... BUT, I have to say this time it's a lot easier than last time. Hardly any diarrhea, day 5 pain was already a bit better, less mouth issues. I was ready with imodium and more drugs but didn't need them. All I changed from last time was I started taking claritin the day before my fulphila in stead of the day of, and I've started rinsing with dry mouth wash earlier. Not sure if that accounts for all the difference. Now I have no idea what next time will be like, but I have 2 more weeks until then.
Oh, btw - I have one finger tip that has been feeling either numb or like it had frost bite for a week now. I'm using ice-mittens for my hands so I don't know if it's the chemo or I really did get frost bite. weird.
Stay strong!
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susan: I had sores the first round, but I was eating a lot of tomato soup and acidic/sour fruit (like Granny Smith apples) My nurse suggested to rinse with salt water at least 3 times a day...which I did the first time. The second time, I have stayed away from tomato soups and apples...and have not had any sores. I also rinse with salt water after I eat every time.
I got fluids yesterday, and it perked me back up! I was having some constipation issues, which I’ve realized now was because I was dehydrated! Trying to force more water down now, it’s a lot easier since I’ve been adding lemon or strawberries to ice water.
The other biggest issue is taste. Food does not taste good at all. I can barely stomach anything because of the horrible taste. I’ve lost 7 pounds. I have been doing chocolate protein shakes, and yogurts...but I just want to eat a cheeseburger and have it taste like a cheeseburger. I spent some time today ready The Cancer Cookbook...and found a recipe for curry chicken salad I made for dinner. It didn’t taste exactly like it should, but had the most flavor out of anything I’ve tried all week. I really really hope the loss of taste isn’t cumulative through the next few rounds. My taste did end up coming back fairly well after the first round. But I don’t remember everything tasting this bad last time. Maybe it did.
Welcome to all the new ladies...and best of luck to everyone through the next few days
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