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Waiting of the other shoe to drop?

alicia2020
Posts: 114
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: 645
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: 2878
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: 225
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: 645
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: 340
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: 114
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: 225
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: 553
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: 553
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: 553
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: 225
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: 1469
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: 114
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: 186
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: 2057
Joined: Nov 2009

So happy for your alicia!  

SF73
Posts: 307
Joined: Oct 2017

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

alicia2020
Posts: 114
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: 186
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: 34
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: 34
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: 114
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

alicia2020
Posts: 114
Joined: Sep 2020

Good morning!

Round 4 turned out to be just about as rough as Round 3. Nott quite as bad, but not great! I still had the stomach lining issues, but could control a little better.

Round 5 was pretty easy to take! Thank goodness! And now I've finished Round 6! Seems like it's true what they say about the problems with fatigue being cumulative, but I can handle that rather than the gastric stuff. Feeling a lot better after that one! Now, just have to wait for CT on Thursday, and hope for good results on the 30th! Gosh, I hope that's the end of it!

I'm still waiting for genetic testing results and then will have to make a decision about whether or not to take "maintenance " drug (Zejula) to prevent reoccurrence. I know there can be pretty serious side-effects, but feel like I should probably try it and see. I just want this to be "over," and try to get to back to my pre-cancer life. We've had our first dose of the Moderna and will have second dose first week of April. Between cancer treatment & the pandemic, it's been a pretty long, miserable, winter, but hopefully we can resume some bit of normalcy around here by the end of April! I'm so sick of feeling sick, looking horrible, bad hair, and dressing in sweats! We're approaching the finish line and I keep telling myself to be patient just a little while longer!

I hope all of you are doing OK. i pray every day for all of you here, the country, and the world to get well and get our regular lives back. 

Hugs to all, A

EZLiving66's picture
EZLiving66
Posts: 1469
Joined: Oct 2015

I wondered how you were doing, Alicia. I sure hope you get good news on that CT scan. It's always a balance on side effects vs treatment plans. I only had three chemos because the side effects were making my life unliveable. In hindsight, I'm glad I did but everyone has to make that decision for themselves.

My husband and I were both able to get our vaccines when our county brought it to our 55+ community. I too am hoping this pandemic will be over soon. Florida doesn't have a mask mandate - it's on a county-by-county basis so it hasn't been too bad here this winter.

Love,

Eldri

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

Alicia, I'm glad to hear that you're done with chemo and that you're halfway through the vaccination process. I'm hoping you get good news after your scan. Let us know about the scan and genetic tests results once you hear.

I got my second shot on Friday but am still taking precautions since my siblings and other friends are still waiting for their shots. Plus wearing the mask has had some benefits for me – I haven't bothered with makeup more than a few times this past year and I never had any of the usual colds or my seasonal allergies. But it will be nice to eat in a restaurant again instead of takeout.

alicia2020
Posts: 114
Joined: Sep 2020

For your kind replies! The support is very much appreciated! I will let you know about my results! I was full of "scanicety" for a few days, but thankfully reverted to my normal "It is what it is" and there's nothing I can do about it attitude pretty quickly!

We were so lucky with the timing of our first shot because being a current chemo patient I could only get it 2 weeks post-infusion, so our window of opportunity was very small! And I need to fly the end of April to tend to my duties as Executrix of my uncle's estate & I couldn't get on that plane without being fully vaccinated!! (It's a 3 day drive, so driving it was NOT going to happen!)

Funny what you said about the makeup, cmb!! I've only put on any makeup maybe 3 times in the last 6 months and I thought to myself,"Do I even remember how to do this??" ;)) And "What's the point with this mask on?" My eyebrows are pretty much gone now.....haven't lost my eyelashes yet, but fear a mascara wand would drag them right out! I complained about my "bad hair" in previous post, but it's mostly because it's so thin and my regular blond highlights aren't much anymore. I'm trying to wait as long as possible to do anything about it!  I'm very thankful I have what I do & glad I did the cold-capping routine, but it WAS pretty torturous by the last infusion. My hair was so thin by then that it was colder and made me very nauseous. 

i really appreciate all of you ladies. Thank you, again. I keep asking God to heal all of us. I wish no one ever had to fight any cancer. 

Love, Alicia 

alicia2020
Posts: 114
Joined: Sep 2020

I wish I had great news, but we're still waiting. I had my CT and 5 days later finally got to see doctor for results. There were two "fluid collections" in my lower right pelvis, which radiologist clearly stated were most likely "seromas or cysts." So now doctor saying I need PET scan to be sure they're not cancerous. What??? I was horrified, heartbroken, and confused! First of all, all my original problems were on/in the left pelvis. Secondly, they were tiny tumors, not fluid collections! How could fluid sacs be tumors?? He said he needed to be 100% sure that there weren't cancer cells forming ascites. WHAT??? I've never had ascites, and any accumulation of ascites I've ever read about are free fluids and in the upper abdomen! Not contained in sacs!

I cried incessantly for two days. Seriously, he's got me scared to death that this means I've had a recurrence during first-line treatment. Face more chemo? OMG. We all know second-line treatmeants mean you're on the downhill slope. So...I had my PET yesterday morning. I complained to the technician that I was going to have to wait until Tuesday for results...which is ridiculous seeing that those will be in his office by this morning. I begged he and then his office staff not to make me wait over Easter weekend....Nope, you have to wait. 
Well...they sent me home with a CD. I've "read" it myself, and it appears that those spots are indeed just seromas. Nothing in the pelvis is "lit up," No nodules or tumors, or anything "lit up!" Thank goodness. We are withholding any celebration until we actually get a report from him, but I have been able to stop crying so much. I'm just so tired and feel like my mind and body have been beaten up. 

I'm really tired of being my own darn doctor. If he had any heart he would call me today to ease my mind. I know it's Good Friday, but his office is open. Of course if he calls me he can't charge my insurance that $500 he gets for office visits. Like this cancer business isn't tough enough? Why do they seem to delight in making it harder?

I wanted to alert others about the seroma or cyst possibity. My second surgery was long & arduous, so seromas could easily occur. Mine are small and not causing me issues at all. Eventually my body should reabsorb them.

I'll let y'all know when/if  I finally get my "All Clear!"

I hope you all can enjoy a nice Easter!

Hugs, Alicia

 

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

Alicia,

I looked back at my CT-scans. It took about 1.5 years after surgery for the small lymphocele or seroma I had to disappear. The ascites I had after surgery also disappeared in that time frame. So be patient if the seromas take a while to reabsorb into the body.

But your comment about getting the CD is very important. I've always asked for copies of the disk at the time I've had any procedure – mammogram, CT-scan, MRI, DVT scan, etc. I then make sure I get copies of the written reports later. I don't usually look at the disks myself, although I always read the reports. But should I ever need to get treatment at another hospital, having copies of the disks and reports would be a great help to the new doctor.

And you can't count on your health system to make the written reports available long-term. My health system changed to a new medical records system a couple of years ago. While some data remained – like the blood work I've had in recent years – all of my older imaging test reports were no longer available online. So I was glad that I had my own copies.

Alicia, I know that it's stressful to wait until you talk with the doctor, but the initial indications from the PET scan look good. Try to have a relaxing Easter.

 

alicia2020
Posts: 114
Joined: Sep 2020

You're always so kind with your replies!

I'm glad to know your report about how long it took your seroma to reabsorb. Most of what I've read said sooner, so I won't be alarmed if it's longer! 

I'm supposed to give that CD to my ONC, but I wa thinking it would be smart to get a copy for myself. Funny....when they said CD I said, "Really, like a disc?" Like it seemed so antiquated to me!! Technology moves so fast! Remember when we all had stacks of "floppy discs?" 😂 Seems like a million years ago!

Thanis again for your support!

Happy Easter to all! 🐣 Alicia

Dak82's picture
Dak82
Posts: 34
Joined: Dec 2020

Alicia you and I were on roughly the same calendar schedule for chemo--taxol/carboplatinx6. I also had 3 sessions of brachytherapy between rounds 2 and 3. My doctors have made it clear that I must also undergo 25 sessions of radiation after I recover from chemo. My last chemo round was 30 March. I was stage 3C2 and surgery got the visible cancer. So now I'm waiting for the radiation schedule. I have no scans or other tests scheduled. I feel quite lucky that I got through this much of the treatment with no dramatic side effects so far. Some CIPN in my fingers and toes, persistent anemia and some bone pain from the Neulasta. No nausea, extreme fatigue or other negative side effects. I have been able to walk daily and even mix in some light jogging. The most noticeable chemo side effect for me has been the breathlessness after relatively little exertion. I have learned how to manage that over the last 3 months but every once in a while I overdo it. Today I rode my bike outside for 32 miles and spent the rest of the day feeling pretty wasted. I have managed to keep up a 40 hour work week as well--thank heavens for telework! i got my first Pfizer shot a week ago.

I mention all this because I feel very blessed and lucky for both my residual health and the wonderful doctors and nurses here at Huntsman. We all have different paths we follow on our journeys. My CA125 is in the teens so I accept that the treatment has been successful so far. Everything we are doing now is to prevent recurrence. I am also blessed, that like you Alicia, I have a non-aggressive uterine cancer.

I have not had another shoe drop and I pray it stays that way. All of you on this forum have stories of strength and persistence and I thank you for them.

Deb

zsazsa1
Posts: 553
Joined: Oct 2018

Deb, make sure you go on a probiotic a week before beginning the external beam radiation.  I didn't find out about this until after I developed HORRIBLE intractable acute radiation enteritis.  Others on here then told me about probiotic, and it helped greatly.  Someone said that they had begun the probioltic a week before they began external beam radiation, and had NO diarrhea!

alicia2020
Posts: 114
Joined: Sep 2020

Thanks, Deb! I'm trying! I'm never good with the waiting!

I don't know how you do it! Seriously, bike 32 miles! I thought about my bike the other day and made myself laugh at the idea of wobbling down the street for 50 ft. and falling over in a heap! My fatigue has been so awful that most days I have felt like my legs were just two sticks holding me up! I'm so proud and happy for you that you have faired so well!

I guess I have been a little more concerned than I might be about this recent "we're going to need a PET," because my CA125 has never gone below 22. He says "it's not a good marker for you," but it's still not what I hoped for!

I hope everything goes well for you with the radiation. You're a trooper!

I'll let y'all know what I hear late Tuesday. My appointment is for 5:00pm.....(.Never heard of an appointment so late!)

Hugs, Alicia

zsazsa1
Posts: 553
Joined: Oct 2018

Alicia, it took a long time for my Ca-125 (36 at diagnosis, soared to 72 after surgery) to come down.  Finally, I think maybe a year after surgery, it seemed to settle in the low teens.  There was a slow creep in there up to the high mid teens, and I freaked, but then it came back down to the low teens, and has stayed there.  

alicia2020
Posts: 114
Joined: Sep 2020

I really appreciate you sharing that information about your CA! Mine was 20 at diagnosis, and went to 66 after my second surgery. I know inflammation and other things can cause it to be elevated, but it's still disconcerting, right? Especially since there are only a few things to indicate a possible recurrence....none of which is too scientific or definitive, it would be nice if the CA was dependable! How are you feeling? And a pelvic exam can't possibly detect a whole lot in my case! When I had cancer in two different places in my pelvis I was feeling fine! And what got me to the GYN office was very minor spotting that 1) was coming from a benign polyp, and 2) contained within an organ I no longer possess!

It's going to seem like an eternity waiting for that 5:00pm appointment today for my PET results :((

I always am so appreciative of y'all's support & concern!

❌⭕️, Alicia

 

alicia2020
Posts: 114
Joined: Sep 2020

Finally got my PET results! It's not perfect, but pretty darn good!

Those two "fluid collections" were fine! Indeed, report stated they were "seromas or lymphoceles." YAY! My doctor said at least three times he was "...happy with the report!" The only concern, which was recommended to be followed up, was about some inflammation in the left "iniligual (sp?) canal," and a small, non-enhancing, possible "necrotic lymph node." Doctor didn't speak to that lymph node at all, I only learned of it by reading the report after I got home. Regardless, doctor wants to do follow-up CT in 3 months to watch it. That inflammation had also been visible with just the CT, so keeping an eye on it won't require another PET.

All in all, we are very happy and tremendously relieved! It appears that first-line treatment WAS successfu! I can live with the "watching," cuz isn't that what we all have to do anyway?!?

Thank you to all of you who have supported me through this treatment process! I appreciate you very much!

❌⭕️, Alicia

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

And necrotic means dead tissue so maybe that is why your doctor didn't mention it.  I would think it was not something to worry about.   

els19
Posts: 91
Joined: Jun 2014

Alicia, congratulations on the great report! I'm sure you're very relieved. Thanks for sharing the good news.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

Congrats Alicia! So happy to see your great news this morning!

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

Alicia,

Happy to hear that the doctor confirmed what you had thought was the case. While I know your trip later this month won't be for a happy occasion, after a year of shutdown, the ability to travel freely again is one that most of us are looking forward to.

alicia2020
Posts: 114
Joined: Sep 2020

You are all so sweet to share our happiness! Your support means so much to me. You have helped me through a very tough time!

I have an appointment to see about taking a PARP...I know y'all see I started a new thread about it. I learned that my fabulous chemo nurse will be by my side as I see how that goes. I haven't completely signed on yet, so we'll see what she says.

My doctor said, "Now go have fun in New York!" I laughed! You're right, cmb, it's not a fun trip, but stuff I have to do. I will take five days though, while the estate sale prep and event is in progress, to make a trip to PA. My mother and uncle grew up in this beautiful little town on the Susquehanna River. As I grew up, I spent a month there every summer and I have very fond memories of it. So I will spend five days smiling, taking walks along the river, shopping, eating, and napping! Heaven! About the best "change of scenery " I can imagine!

Thank you again for being with me, friends!

Love and hugs, Alicia 

 

oldbeauty
Posts: 303
Joined: May 2012

Alicia, it sounds like your plan is the perfect way to celebrate.  Enjoy our lovely spring weather.  Best wishes, Oldbeauty

ConnieSW
Posts: 1546
Joined: Jun 2012

fingers crossed for you yesterday evening.  So glad to hear the good news.

alicia2020
Posts: 114
Joined: Sep 2020

Thank you again for the kind words and love you have shown me, Ladies!

Forherself, when I read that "necrotic lymph node," I said to my husband, "Necrotic??? That means dead?!? I have a dead lymph node??? Well... then OK! Good!!" I googled it immediately and found that it actually can be OK (nothing) or bad! In some cancers it can mean metastasis. I decided not to worry about it..,1) My doctor didn't think it was worth mentioning at all, 2) It would make sense that since he removed all the lymph nodes he found for staging purposes and that could mean that some lymph nodes might have died off because their supply lines were derailed?, and 3) nothing was misshapen or "lit up!" Man....that "lit up" thing was what we desperately wanted to avoid!

Oh....so, this is so stupid, but expected...I asked about having my port flushed. Can I get on a schedule where I get my port flushed AND have my 3-month checkup at the same visit? Oh, no, they siaid! If you do that, insurance won't pay for it! It has to be two separate appointments on different days! I said, "That sounds about right." Oh.., but you can pay cash for the port flush. It's $25. Seriously.....it's an 1 1/2 hour round trip down there (and putting your life on the line in crazy Houston traffic!) and over 2 hours if you include parking and the flush!. Good. Grief. I said, "I think I can afford the $25." The medical and insurance system is completely messed up! 

Hope y'all have a great week!

❤️, Alicia

 

MAbound
Posts: 1104
Joined: Jun 2016

I never had to have a separate appointment to have my port flushed, but I probably had different insurance than you had. The only way to be sure is to call your insurance company about that to verify that your doctor is correct. He may be thinking of requirments of insurance different from yours and just does it that way as a blanket policy so that he doesn't screw anything up. $25 isn't a lot by itself, but it's on top of everything else. 

Tamlen's picture
Tamlen
Posts: 294
Joined: Jan 2018

So glad to hear your good news!

The port flush thing just sounds weird to me. I had my own port and saw many others get their ports flushed as part of other routine visits. I agree with MAbound -- check with your insurance.

Also: You're very smart to go through your scan results yourself. Every now and then, the onc misses something worth getting their attention. Last year I had a scan, met with my onc, she was happy with the results, we drove the hours home. Then I received the scan report and it mentioned "mildly avid FDG uptake" in an axillary lymph node (sort of under my arm). I'd had mets to my lungs when first diagnosed, so this seemed worth asking about. I used the patient portal to ask and the nurse came back immediately and said my onc wanted it ultrasounded. All came back negative and nothing more has shown up there, but I'm glad I read that report and drew her attention to it.

Tamlen

Fridays Child
Posts: 204
Joined: Jul 2019

So happy to read your good news!  And while it's not a happy reason for the trip, it does sound like you've found the way to bring joy into it anyway.  Good for you!

Interesting about the port flush.  I have one currently scheduled the same day as my next CT scan but one or the other will have to be changed because I have to premedicate and drink the contrast, and the port flush is scheduled right when I have to be taking pills and drinking contrast. 

alicia2020
Posts: 114
Joined: Sep 2020

Thank you again, Ladies, for your support & kind words!

I am going to call my insurance! I have noticed more than once that comments are made regarding coverage for this or that and I am reminded that we all can have very different kinds of coverage and may or may not be covered for certain things. So, I will call and see!

I'm still having a bit of a hard time emotionally and physically. I am still (a month since last infusion) having problems with fatigue. I had what I thought was a pretty good day Thursday, and then yesterday felt crummy all day...kind of weak and nauseous. it's weird...and hard to describe...but the skin of my legs feels feels kind of numb and a little painful. I think a form of neuropathy that's not effecting my feet because I iced them? And it's hard to distinguish physical causes of fatigue from emotional ones. I still feel pretty beaten up by the stress of a worrisome CT result, waiting for PET results, and then the decision about the PARP inhibitor hanging over my head. I so desperately want the old me back!! I guess I just have to be more patient.

You all help me a lot! Thank you!

❤️, Alicia

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

is normal too.   It is not a straight line of improvement.  With so many things, I think it is much more common to have good and bad days mixed up together.  Just baby yourself on the harder days. 

Sue

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

Alicia, you are right.... You are going to have to be patient. Your body has been through a lot and it will take time to level out and find your new normal. Please rest when you need to and try to walk a little every day. When I finished my treatments, I could barely walk one lap around the yard. It took a long time to build my strength back. And, it took me about 18 months to really feel about as good as I did before cancer.  I promise you it does get better both emotionally and physically. Be kind to yourself and continue to come here for support!

Love and Hugs,

Cindi

alicia2020
Posts: 114
Joined: Sep 2020

to my eyes that y'all are so kind and sweet to me. Thank you so very much! And your comments help me so much! It's important to hear such things from those who have actually gone through it. It's certainly not the kind of thing you can read just anywhere on the internet! I have been trying to walk a little every day, but it's hard.....I'm scared to get too far from the house, so I stay close. We had a nice family lunch together today and it helped to lift my spirits tremendously! A beautiful spring day on a big, open patio and lots of laughter.
❤️❤️❤️Thank you again for the encouragement❤️❤️❤️It means everythin.

Alicia

els19
Posts: 91
Joined: Jun 2014

Alicia, I totally understand what you're going through because it's the same for me. I am so fatigued and it's so frustrating! But I ve been thinking back to my first time going through treatment and it was the same. It takes time to build back strength but even though I know that, it's still not easy. I also bounce around from day to day. Some days I feel better and then the next it's back to being so tired it's hard to walk around my backyard. Emotionally this has also taken a toll and the uncertainty of the future. But I know from the past, time helps. A friend who had been through cancer told me last time to take it, not only day to day, but week to week and season to season. And right now I do know that I'm better today than a week ago, even if it's not by much. And I'm expecting to feel much better a month from now. Hang in there!

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