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Waiting of the other shoe to drop?

alicia2020
Posts: 64
Joined: Sep 2020

Hi, Ladies!

So, that's my question! I've had 2 rounds of Paclitaxel & Carboplatin and I feel pretty darn good! I asked my GO,"So, should I be waiting for the other shoe to drop!" He said, "No!"

Round 1:

That one hit me like a ton of bricks. I really felt like my body had been ASSAULTED. Partly my fault...even though I was doing all the recommended things, I let constipation get the better of me. Infusion day was fine. No allergic reaction & low dose steroid doing it's job. Day 2: fine up until about 2:00pm when steroid started wearing off & my face was very flushed and hot. Day 3: OK. Day 4-6 felt beyond horrible. Nausea mostly under control with meds, but very weak and exhausted, my whole body hurt. Day 7: decided that I might live. Took another week to feel anything close to my regular self.

Round 2: Days 1 & 2 I was dandy..then the hot face. Day 3: OK. Day 4: By end of day cried because I felt so badly, but no vomiting. Day 5: Still don't feel well. Day 6 & beyond, I feel pretty much normal!

So, of the myriad of possible side-effects, I only have 3:

1) Hair loss. I did cold capping. I have thinned a lot, but on day 33 I still have a full head of hair with no bald spots. Doctor convinced that by the end of this week I will have a second wave of shedding and need to shave my head. We'll see. I hope not. I still have hair in other places.

2) Nausea. This is very well controlled with my medication.

3) Constipation. I have figured out how to control this.

Back to my question! I've iced my hands & feet to prevent neuropathy & avoid nail problems. Seems to be working, as I have no sign of any of either. I know neuropathy can be cumulative and come on much later. I am not having any skin issues...no rashes or even dryness. I'm having no weight gain, in fact have lost 5 pounds, No chemo brain. No chemo belly. No extreme fatigue (I know this can/will be cumulative). No mouth issues. No joint or muscle pain. Bloodwork very good.

Doctor & nurses think I pretty much saw the worst of it after that first round & that I'll be pretty fine throughout the rest. They told me originally that because I have no co-morbidities that I would/could have an easier time of it than some people.

What is your experience, Ladies? Did y'all do alright & then crash & burn after round 3? I'm very optimisti, but want to know if you think I should wait for the other shoe to drop?

Merry Christmas to All! Happy New Year!

 

 

 

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

Other women's experience may differ, but my oncology nurse told me that the side effects I had after the first infusion would generally be what I had each time. This was true for both phases of chemo that I had.

I did feel really awful after the first infusion of the second phase drugs (Ifosfamide/Mensa/ Doxorubicin), but my oncologist changed up my supportive care drugs like steroids and a stronger antiemetic on the last day as an inpatient for the remaining three cycles. I also went into the infusion center a couple of times the week after my infusions during this phase to get extra fluids and antiemetics. With these changes, I never felt as bad as I had after the first infusion, although overall I never felt as good as I had on Paclitaxel/Carboplatin.

The one difference is that I did develop neuropathy in my feet after my last chemo cycle. The oncologist was a bit surprised that it occurred so late in treatment and after drugs that aren't typically the culprit like Paclitaxel/Carboplatin.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

alicia, I think the worst was the first treatment for me.  It seemed my body said, "what the heck is this?" and then time the second time came around it said, "oh, we've seen this before" and it wasn't as bad.  However, we are all different.

As you see, chemo isn't a cake walk, but you can understand what so many mean when they have said "it is doable".  It is long enough to figure out the correct miralax cocktail to avoid the constipation and the good anti-nausea drugs to help.  Things may change for you some over the course of treatment, but you will surprise yourself on how you do.

Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

I'll follow this thread for other updates. I went through 4 treatments of Doxorubicin and it was all fine until I started getting out of breath after the third treatment. And I lost my hair, too. I didn't do anything to try to avoid that. I had no other side effects, except for the fact that it damaged my heart. My (new) cardiologist said the damage is irreversible, but it wasn't too bad. On two medications now for that.

I tried to do icing for neuropathy and I have none from Doxorubicin, but not sure if I was supposed to get that from it. Probably not. I didn't have a port for the first two infusions, so I didn't ice my hands and my nails on the right hand are half way up purplish/black. The left hand are a lighter purplish. No pain, though.

The symptoms I'm most afraid of from Taxol are diarrhea (because I never get it from anything) and the rash.

Alicia, what do you do about the hot face? I'm afraid because I'm an hour away from the cancer center/hospital now. My oncologist said I will have a slow infusion the first time and that if anything happens, it will happen there. Then I might have faster infusions every week for 11 more weeks.

 

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

I know that many women struggle with constipation after surgery and during chemo and/or radiation. I never had constipation. Instead, I had drastic diarrhea. I used to call them "purge days" since it could get so bad. It wasn't triggered by anything that I ate, as far as I could tell. It would just happen unexpectantly. My doctor did prescribe higher than normal doses of Loperamide (Imodium) for me to take when these episodes occurred. However, it never happened when I was getting infusions, only afterwards.

During radiation, I initially tried the recommended Metamucil, but that made the diarrhea even worse. I controlled it better during radiation when I followed a low fiber, bland diet. But I didn't eat that differently when I was on chemo, so I think the diarrhea was just my body's reaction to the treatments. I also scheduled radiation for early morning and just never ate before treatment.

All I can suggest that you be prepared for either constipation or diarrhea, depending upon how your body reacts and stock up on Imodium and MiraLAX in advance so that you're ready for either reaction.

LisaPizza's picture
LisaPizza
Posts: 331
Joined: Feb 2018

I didn't find that things got massively worse cumulatively. My white count nadir did get progressively worse each time, and was below 500 that last couple. My grace period after infusion until symptoms hit got shorter with each cycle. And I got a few tongue ulcers the last couple cycles that I didn't get at first. And the off taste (not metallic, more like sweet but in an unpleasant way) got worse over time. But nothing major. I actually felt quite well in the last week of each cycle.

alicia2020
Posts: 64
Joined: Sep 2020

Thx so much for your replies! I feel encouraged! And I do now understand "the doable" thing! I thought the exact same thing, NTFC! After that first round, I felt like my otherwise very healthy body was screaming at me, "What Was That???" Round 2: "Oh, yeah... that." And the fear that you don't know what the final result will be makes it harder. 

Primavera, I've been paying attention to all your posts and my heart and prayers are with you. I know you're afraid of the taxol. So was I, but my first infusion was 3hrs of it, then 2 of the Carboplatin. And It Was Fine! They are right there with you and I think you'll do fine! From everything I've read if a reaction is going to occur it happens pretty quickly. So, I don't think you have to worry about getting all the way home and then have a problem. My second infusion they were able to speed up a bit since 1st was OK. The hot face: it did look flush/red, and was uncomfortable, but no after effects. It lasted for 4-6 hrs? I just used a cold & wet washcloth and gently laid it on my face or patted my face. I had purchased a silly full, gel face mask that you can freeze, but it seemed too cold.

Y'all are always in my prayer,

Alicia

Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

I wish they would just give me Taxol the first time, but it looks that I can't escape having Taxol + Herceptin + Perjeta. All that after having a bit of heart damage from Adriamicyn.

I'm getting healthier for it, though. My family got the coronavirus and I had to run back to my boyfriend's house (far away from the hospital) and I've been here ever since in quarantine (got negative results), but I was in a really bad shape a month ago. I couldn't walk a block without having to sit down and actually had an episode of almost fainting when I went to take the test. Good thing there were doctors there; I was sitting on a wheelchair before I fainted.

I'm on two medications for the heart thing now, a "proceed with Hercepting/Perjeta with caution and careful follow-up". But also I got two units of blood last Friday and now I can breathe and feel a lot better. My red cells kept on going down and there was nothing that would bring them back up. So I guess that's why I could hardly breathe. I was supposed to have this Taxol+ treatment on 11/17 when this craziness started happening.

zsazsa1
Posts: 539
Joined: Oct 2018

You sound like you're doing very well, and I agree, seems as if you will sail through this.  I, too, had the hardest time with the first round.  No round after that was as bad.  They weren't all the same, but never as bad as the first.

Keep icing diligently!  I am about two years out from chemo, and all I have is a little numbness in the ball of my left foot (where it escaped the cold by resting on the bottom of the ice-water plastic shoebox, hence being against the warmer carpet).  Otherwise, hands and feet are fine.

IF you lose your hair, it grows back fast.  I kind of liked that butch perfect haircut look I had when it started growing back in.

So glad you're managing so well.  Cheering you on!

zsazsa1
Posts: 539
Joined: Oct 2018

Oh, one more thing.  The steroid dose is in case you have an allergic reaction to Taxol.  I hated the steroid mania, so after I didn't react the first couple of times, I asked my oncologist (really browbeat her) to reduce the steroid dose significantly.

zsazsa1
Posts: 539
Joined: Oct 2018

Prima, I never had any rash while on Carboplatin and Taxol.  And the diarrhea was not memorable (not like the horrible diarrhea I had from the whole pelvic radiation).

I tried to look back at why you got Doxorubicin first, but your profile hasn't been updated since July, so I couldn't tell why.

Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

I forgot all about my profile. I got diagnosed with breast cancer at the end of August this year. It was a shock. I had a 3.2cm tumor (that I didn't have back in February) on the left breast, aggressive, growing on top of a "bed" of more cancer. This time, I haven't even read all the small details. I only know I'm HER-. My right breast had been the one doctors were following for calcifications and that one turned out to be OK.

It was crazy. I was sent from a regular mammogram, to more views, to ultrasounds, to stereotactic biopsies and then to a surgeon, who sent me to an oncologist because he thought I should have chemo right away. So I started with the four treatments of Adriamycin first that will be followed by 12 weekly Taxol doses, with Herceptin and Perjeta (for a year, included with Taxol every third week).

I just like coming over here, instead of going to the breast cancer forum.

I think CMB got Adriamycin, too. I had no problems at all with the first and second treatment, but then got out ot breath after the third one, and I noticed my heart racing sometimes. 

EZLiving66's picture
EZLiving66
Posts: 1452
Joined: Oct 2015

Alicia2020, I'm glad you're doing so well. There have been women on here who worked right through the chemotherapy which amazed me. I had Carboplatin and Taxotere. I don't see them using Taxotere much anymore.

I hope you escape any long-term effects!!

Love,

Eldri

alicia2020
Posts: 64
Joined: Sep 2020

Hi, Ladies!

i have actually been pretty sick since Round #3, but I'm not blaming it on the chemo! I got a terrible migraine, which I've suffered from my entire adult life, at the end of day 4, and that's just about undone me. I've never had prescription medications for migraines because it wasn't necessary, but my normal remedies weren't working. I should have let my chemo nurse know because by 4am on day 8, my husband declared, "That's it, I'm taking you to the ER." So, they did a CT to rule out anything else, gave me a "migraine cocktail," and some fluids. Hours later I was still very sick and finally texted chemo nurse. She called in a more heavy duty anti nausea med & that finally helped!! So, bottom line I was kind of OK from infusion, but migraine got me! And LisaPizza was right! My little post-infusion "grace period" was shorter! I was so grateful to have been warned about that! Thank you, LP!

As to anyone curious about my cold-capping progress....and I always know this can change at any moment!...I still have my full head of hair, with no bald spots! It's thin, and under normal  circumstances I would be very unhappy with it, but I can still put it up and most people would not notice that anything was different! The experience for Round 3 was borderline excruciating. Because my hair is thin, there was less insulation and the caps felt VERY cold. It was doable and I keep telling myself that it's only 6 days, as opposed to 2+years to get my regular shoulder-length hair back. You know GO had said even with cap it would be gone after Round 2! I saw him the morning of Round 3 and told him how glad I was to still have hair! He grinned and said, "I see! I'm impressed!" Fingers crossed! 

Oh....I did want to mention my CA125! After Round 2 it was reduced by half! It was only 66 to start with, but it had dropped to 32. I considered that there were 3 possible impediments to me receiving frontline treatment...1) allergic reactions, 2) bloodwork collapsing, and 3) drugs NOT working! I feel like I've gotten past all three and now it's Onward and Upward!! 😃 

Thanks again for all your support! And it helps so much to know what to be prepared for!

Have a great day! 😘, Alicia

Molly110
Posts: 182
Joined: Oct 2019

Congratulations, Alicia, on being half way through with no dropped shoes! Your migraine sounds awful; I'm glad they seemed to know what to do for it.

I wish now I'd done the cold capping, which is free at my center. I think it's actually good that your head feels so cold. One of the reasons I decided against it was that my hair was long and very thick and cold capping works best when the cold can really get down into your scalp, and thick hair can sometimes prevent the super cold getting all the way into the scalp (a very lay explanation, but I'm no expert). Even if you've lost (or lose) a lot of your hair, the way I've come to look at it is that every hair follicle you save from the chemo drugs is a hair follicle that you keep active. 

Those of us who don't cold cap and lose all our hair have to start from scratch. As far as I'm aware, there is no way of predicting whose hair will grow back well and whose will not. Losing my hair was one of my first thoughts after diagnosis and one of the hardest parts of the experience. The main reasons I didn't cold cap are that it only works for about half of the people who do it, it's said to be super painful for the first few minutes each time, and I thought I should just concentrate on getting through the chemo. I was heavily influenced by what I'd been told and read over and over on supposedly reliable websites -- "don't worry about your hair, it will grow back fast." That simply is not true. It may well be true for most women, but it wasn't true for me. This month marks a year since my last chemo, and my hair is barely 3 inches long. I hate it, and for months I worried that something was wrong because it was growing so slowly and it was supposed to be coming back fast. I wish I had known then what I know now -- some women's hair will grow back really fast and some women's hair will grow back very, very slowly. There is a popular breast cancer website whose optimistic statement on hair regrowth was widely quoted on many other otherwise reputable sites. I wrote them later about it and maybe they also heard from others, because they changed the statement to be more accurate.

At the rate my hair is growing, I don't expect it to grow to its former length for at least 5 years, and perhaps never. For anyone still in chemo who reads this -- there is no reason for you to think you will be one of the people whose hair comes back really slowly. So, concentrate on getting through chemo. When you're done, try not to panic if your hair doesn't come back as quickly as you've been told it will or are hoping it will. A Japanese study published in 2019 looked at the typical chronology of hair loss and regrowth after chemo and found that the majority of women are still wearing a wig a year after their last chemo. That tells me that a lot of other women are also dealing with slow growing hair.

I hope the rest of your chemo lands gently on you,

Molly

 

 

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

So happy for your alicia!  

SF73
Posts: 299
Joined: Oct 2017

How wonderful! So good to see the drop in your CA125 level! 

alicia2020
Posts: 64
Joined: Sep 2020

Good morning! I appreciate y'al's support more than you know!! This is such a difficult road we are all on and it means everything to have cheerleaders!

Molly, I'm glad you wanted to write about the cold-capping issue! I think it definitely deserves discussion and yet, it's a difficult topic. I've seen only a few posts on this board about it and I have hesitated to bring it up. The LAST thing I want to do is upset any of my friends here. I have done considerable research about it and have hoped that I might encourage new patients who join us to conspider it. It's a VERY personal decision. And a decision I have to continue to make for each treatment....Is it still worth the aggravation and agony? So far, the answer is yes. So, this is what I've questioned and what I've learned:

1) My GO poo-pooed it. I don't really think that's fair to his patients. As devastating as hair loss is, I think women deserve to have options. Like Molly said, it only works for about 50% of women. That means for 50% it DOES work! I was willing to try. I have lost hair. All cold-cappers are going to have shedding and lose some amount of hair. During that first shedding there was LOTS of crying here. Sobbing. Seeing it go is still heartbreaking....and then for me it never stopped completely, but thank goodness dialed back to what would be more like regular daily hair loss.

2) It doesn't have the same side-effects for all (just like everything else!). A lot of people get excruciating headaches. That would have been a deal-breaker for me. I take a pain pill, a little Xanax for anxiety, and use a heating pad to avoid the rest of me freezing to death. The first few minutes with each new cap causes me to be nauseated. I power thru it.

3) Not all cold caps are created equal. The machines would be best-case scenario as far as ease of use goes. That was not available to me. The Penguin caps are heavy and require an assistant to work ridiculousply hard to do it for you for hours. During the pandemic this was not an option because I can't have anyone with me in the treatment room. I'm using "Wishcaps," which is a simple beanie and my wonderful, fabulous chemo nurse is happy to do for me! If I had to get up every 30 minutes for hours and dig around with gloves in the dry ice for a fresh cap and replace the used cap, I could NOT do this!

4) From everything I've learned, regardless of how much hair one loses during the process, hair will grow back faster and better when it's over. Molly's right about preserving the hair follicles. I guess I've learned that I'm more vain than I might have known, but when this is over I don't just want hair back. I want MY hair back!! I had open heart surgery in 2014 to replace my mitral valve. I did the research and discovered it could be done via a right thoracotomy...my incision was under my right armpit and breast.  I couldn't stand the idea of them cracking open my sternum, but the most important reason was that I didn't want to look at a big scar in the middle of my chest the rest of my life. I could care less about others seeing it. I didn't want to see it every day for the rest of my life!! I didn't want to be reminded of the year of agony! And so most days it never enters my mind! Yay! So, the last thing I want in my future is to be mad about my hair and relieve this chemo road!

5) That's wonderful that Molly's center offers it at no cost! It's about $500 per treatment, so matter how you slice it, and I've never heard of it being free! I know that cost is prohibitive for many. I am very lucky that it was not a factor in my decision.

6) My hope is that I can get and use extensions as soon as possible when this is over. Since I live where the temperatures and heat index hover between 95-105 for 5-6 months of the year, a wig is not really feasible for me. I hate things on my head. I'm a head-sweater. And I wear my hair up most days to get it off my neck! You can't really wear a wig "up!" 

I hope I haven't bored y'all. I just wanted to let you know some of the things I've learned. I welcome questions. I think it's important to be optimistic about cold-capping if you choose to try, but remain ready to change your mind as you go along. Just like everything else in the cancer journey, it's best to try to get through one day at a time and not look too far ahead!

❌⭕️, Alicia

 

Molly110
Posts: 182
Joined: Oct 2019

Alicia, I love that my center had cold cap therapy available free for anyone treated there. The funding for it came from a foundation associated with the hospital where I got care, which is part of a comprehensive cancer center within a big academic medical center/health care system. I read that the larger system was looking for ways to expand the free  therapy to other hospitals within the system. Although I chose not to cold cap, I'm grateful I had the choice. I would have felt worse had the expense made the decision for me. I believe they use the cooling system where the cap stays cold rather than the caps that need to be replaced like mitts, and I think that costs even more. I know the center defines cold cap success as someone who keeps 50 percent of her hair, and that seemed not worth it to me. I just didn't understand the ordeal of regrowth and the benefits of keeping even 50 percent. My doctor was neutral on it, most likely because of the mixed success and the extra time it adds to an already long chemo day, but he made sure that I knew it was available at no cost and that many of his patients were glad they did it.

If at any time you want to wear a wig for any reason, you might be as shocked as I was at how comfortable the right wig can be. I still wear mine to work, and I've worn it now for well over a year,  in hot and cold weather. I expected it to feel hot in the summer, but it wasn't. Summers here are not as long or hot as yours, though. I'd also read that wigs were scratchy and uncomfortable; mine isn't at all. I expect it depends on the wig. I've been fortunate in being able to buy very high quality wigs, and they never bothered my scalp, even during chemo when my scalp was sensitive. My doctor told me something before I lost my hair, and it was the only time I didn't believe him. He said the only people who would know I was wearing a wig were my close women friends. He was correct. I found a wig exactly like my own hair, and I replace it every 3 months or so (they wear out pretty fast if you wear them all day). A couple of weeks ago, thinking I was alone in the building at work, I took my wig off. Turns out the woman in the next office was still in the building and popped in to say goodbye. She said something to the effect of "Oh my God, you've cut your hair!" It turned out she knew nothing about the cancer and chemo because I started wearing the wig a few days before I lost my hair and the transition was seamless. So often, losing one's hair means losing the ability to decide who you want to tell about what's happening in your life. 

It sounds like you won't need to wear a wig, but I wanted to share this to reassure you that, if you have to, you'll be able to make it work. There didn't seem to be much discussion of hair loss when I was going through it, and I would have liked to know then what I know now about wigs and also about hair regrowth.

Fingers crossed for you,

Molly

Dak82's picture
Dak82
Posts: 14
Joined: Dec 2020

I too have been waiting for other shoe to drop in terms of side effects. I had my first round two weeks after abdominal radical hysterectomy, BSO, omenectomy, 13 lymph nodes removed. I think a lot of the discomfort I had after r1 was due to being pretty beat up from surgery still. I was having tremendous back aches which disappeared in r2. But I did have 36 hours of incredible shooting pains in joints, bones, muscles below the waist. Only Dilaudid allowed me to sleep. And that is the only significant side effect I've experienced although I have developed some numbness in my fingers. So I count myself lucky and hope this continues!

 

Deb

Dak82's picture
Dak82
Posts: 14
Joined: Dec 2020

I did make the decision to shave my head when hair first started coming out in clumps. I had very short, thick hair and I was literally eating it at night. No hair anywhere else on my body either. I never knew how cold you could get with a bald head. My sisters have created bald avatars and we have a riot playing with those. My kids--ages 31, 29 and 27 aren't sure although my oldest, male, said he didn't want to see me bald and prefers to remember my hair. I will protect him from that experience. My middle child is special needs and lives with us. Herr reaction was priceless "you are twinsy, baldie head like Daddy!" We died laughing.

alicia2020
Posts: 64
Joined: Sep 2020

Hi, Ladies!

Thanks for the information and your wig experience, Molly! Dak82, thanks for the laugh about looking like Daddy! I really appreciate y'all sharing.

I really do hope I can avoid a wig, but I try to be prepared each time I comb my hair that it will all fall out. But....Now....this is an amazing new development! My "Wishcaps Guy" had told me weeks ago that since cold capping keeps the follicles from being damaged that I might have new hair coming in soon. I did NOT believe him! And then three days ago I felt some razor stubble near my hairline in the front! I indeed have new hair coming in! It's not everywhere yet, but I can feel other little spots here and there. It couldn't have come at a better time either....what with facing tomorrow as another frozen head day!

And I want to throw this out there.....Even after I got through the horrible migraine and that vomiting, I was still having nausea issues and then sometimes I would think I was fine and very suddenly think, "OMG, I'm going to vomit again!" And I started noticing that food (what tiny amounts I might be lucky enough to consume!), eaten 4-6 hours earlier, were still in my stomach. I did some research and found that just like other fast-dividing cells in our bodies, the lining of the stomach has fast-dividing cells. So....it was greatly slowing down my stomach's ability to send food out in a timely fashion. With all that I've really only had 2 decent days during the past 21.

Just my luck, right? There's a list of 15 "common" side-effects for the drugs most of us are receiving. There's a second list of 15 "less common" ones. Ironically, I've avoided most of those, but have a pretty serious problem with one that's not even on those lists! So far I think the only solution is more/stronger anti-nausea meds. I'll discuss again with chemo nurse tomorrow. Have any of you experienced these kinds of stomach problems? What helped you?

Believe it or not, I'm still optimistic that Round 4 won't be too bad! I learn something each time that helps me avoid ugly consequences! I'm hoping I just don't need to learn any more new things....at least for a little while!

Happy Monday to All! 
Alicia

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