Waiting of the other shoe to drop?

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.

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.

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.

alicia2020 said:

Thank you!

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

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.

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

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

alicia2020 said:

Update:No shoes dropped!

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

So happy for your alicia!  

alicia2020 said:

Thank you for your happy replies!

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

 

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

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.