Starting Chemo May and June 2024 Support Thread

I hope the antibiotics work fast for you @Love4All That sounds awful. I hope it’s not lymphedema!

{{{HUGS}}} @missannabele. The first chemo was my worst for sure. I DREADED going back. I still do each time. I am tired, and I am weary. They say it compounds, but I haven’t had that because I’ve learned how to get ahead of the worse side effects. Maybe your doc can help you explore your options. There might be ways to manage the side effects better, or alternative treatments to consider. You’re not alone in this. Sending you lots of strength and support to find the path that’s right for you 💕

I met my reconstruction surgeon today. It was an ok visit, but not the amazing one I went in expecting. I did so much research on this doc, and she comes highly recommended by the community, my main oncologist (who said, if I had to have reconstruction, I’d want nobody but her to touch me), and people I know, both neighbors who don’t have breast cancer and breast cancer support group members. But she just didn’t seem excited, and she wasn’t willing to talk size, other than saying I’d have to go smaller. She said, if anything goes wrong and the expanders or implants get infected or skin splits, she doesn’t retry; I’d have to go somewhere else to handle that because implants wouldn’t be an option for me in that case, and she doesn’t do DIEP flap anymore. She doesn’t have availability until Oct 8 for my DMX, so my main oncologist scheduled my surgery for Oct 8, after previously telling me my window after chemo would be Sep 23 to Oct 1 at the latest date. Now I’m stressing and processing, and my husband is in a funk mourning my DD/DDD. (I’ve always been lopsided. He was really wanting me to go bigger, which I wouldn’t have done anyway, because that would be ridiculous!) Oh! And it’s a YEAR of expanders after radiation before I can get implants. A year! I was expecting 6-8 months. Today was just a reality check all around.

@bailey.boo Damn, sounds like a crap day for sure 😔😩Tell your hubby to get over it! Like you need to deal with his shit in the middle of yours?! Men can be so selfish and childish. You’re dealing with a life or death illness, major surgeries, scary choices and horrible side effects…. He should just say “whatever you want to do honey, I’ll support you!” 😤 Sorry if that sounds harsh, but we’re dealing with our own crap here and don’t have the energy to worry about how anyone else feels. I think I’m going through the anger stage of grieving right now 😂!

I hope your doctor was just having a bad day and that she is able to get you in sooner for your surgery. Also, it doesn’t hurt to ask around for other recommendations. Maybe there is another doctor out there who would be a better fit? Sending you support and hugs 🥰 🤗

@bailey.boo Wow, what a letdown that surgeon was. I don't like the fact that she's out if something goes wrong. Maybe refer back to the community for their thoughts on her personally? I agree with what @Love4All said, and I'm thankful I don't have a hubby to have to pet while I'm going through this. My sister might be a little pain 😂, but she always puts me first and sees that I get what I need.

@bailey.boo Yep, I agree! Cancer free is the goal. Everything else is just gravy! I guarantee when we are all on our deathbeds some day, our thoughts are not going to be “damn, I had some nice boobs!” We’re going to think about all of the experiences we had, not what our bodies looked like 😘 That’s what I keep reminding myself when I get down about my looks!

@missannabele They should definitely be able to help you for your next treatment. I look at the first one as a practice run. They find out how your body reacts to everything, then they adjust meds accordingly. I had a horrible reaction to the neulasta shot (severe bone pain), so they stopped giving me the shot. Also, they gave me 8mg of dexamethasone (steroid) to take twice a day the day before chemo and for two days after chemo. That was WAY too high for me, so now I take 2mg twice a day. That is much more manageable for my body. With the 20% lower chemo dose, I found my sweet spot. I mean, chemo still sucks, but it’s tolerable now. It took me two full weeks to bounce back from chemo the first time around. The last two treatments I was back to normal in a week.

Good luck at your doctor appointment today! FYI, I keep a little notebook by my bed to jot down my symptoms every day before going to sleep. I find that with chemo brain, I can’t remember what symptoms I had on which days and for how long. I bring it with me to every appointment so I can give the doctor accurate information. Hang in there! This will all be behind you one day 🥰🙏

@Love4All I'm so happy for you, and look forward to ringing the bell… eventually!

So ladies… side effects! I can honestly say I'm sick of this. My tummy is never right! I've had to take to a limited diet or all hell break loose. it includes bland food like potatoes, but at least I get to put butter and cheese on them lol. Two of my favorite things! But I am trying to eat things that mean I can take less Imodium or at least less often. another side effect is my hands hurt. I do get ice wrist wraps while I am getting taxol, but the neuropathy is breaking through anyway. Any suggestions how to deal with the pain? Tylenol works, but I'm hesitant to take too many in a day, mainly reserving for night so I can freaking sleep. although I did take two this morning when it started up. I'm in cycle three of eight so I have a long way to go!

hi everyone! I hope you all are doing okay. I’m having my last chemo as we speak! Then off to radiation. However, slightly worried because my calcium is suddenly elevated as well as RDW (more elevated than last time) and also my liver functions are elevated. Has anyone else had these be elevated and only caused by the meds? Of course I worry that the chemos not working and hoping my cancer isn’t spreading. Any insight from anyone who’s also experienced this is great appreciated even though I’m aware that jut case may be different from others. Thanks

thanks @bythebay !! I’m certainly happy with the milestone. Next is 4 weeks of radiation. I am also having symptoms of peripheral neuropathy as well after this one. My arms and legs are rubbery and weak is the best way to describe it. The other day I tried jumping onto my kitchen counter to reach a high shelf and I couldn’t do it! My arms kept giving out on me and my hand and arm shakes when I hold my coffee. Ugh! Sure hope it’s just temporary.

@ebfitzy Congrats on getting your last chemo!! My counts were all effed up by my last chemo as well. If they went ahead with chemo, it means they are not worried. In other words, if they were worried, they would’ve delayed your last chemo.

I get why you’re concerned. I was, too. But, when I asked my doctor if there was anything I could do at home to help get my levels back to normal, he said “yeah, stop taking chemo 😂”. Basically he was telling me it’s normal to have your levels go all out of whack from chemo, that’s why they check your blood before every treatment. Your body will heal once you’re done!

I wished I had rang the bell on my last chemo day! I guess it just didn’t cross my mind. I was just excited to get the hell out of there 🤪 @bailey.boo im sorry you are having negative feelings towards your plastic surgeon. I’m a true believer in first instincts so if it doesn’t feel right, find another!

I hope everyone is holding out okay and getting through this! I haven’t been very active lately, but I’m slowly getting caught up. It’s nice to have you all here to share experiences with and just have another set of ears because let’s face it- we don’t all have others to talk to who truly understand what we are going through. I love the common ground here!

Let’s talk hair!! So I just had my last chemo, but I’ve noticed I now have stand-up short fuzzy hair coming in! Pretty sure it’s white 🤦‍♀️ I totally wasn’t expecting my hair to start growing back until weeks following my last chemo! Anyone else experiencing this?

Hello all, just wanted to share my worse weekend with you. Days 6,7,8 after this last chemo I was feeling pretty bad, worse than the last one. Finally on day 9, I was able to get out of the house and get some fresh air to watch the grandkids surf. It felt great, so day 10 I was so happy to be heading into the best days before the next chemo. Well day 10 Friday, I had a busy day and when I sat down for the evening I noticed I had a little headache which was getting worse. I started to feel feverish but wasn't sure, pulled out the thermometer and it said 99.6. I checked my paperwork and my instructions were any fever over 100.4 go to the ER. I started getting shaking chills and my temp shot up to 101.5. It all happened within a few hours. So I changed and my husband and I drove to the ER about 10pm. It was frightening how quickly they told me I was going to be in "sepsis protocol" and I was in a room with an IV. They were running all the tests for Covid, flu etc.

The ER is the same hospital where all my treatment is done and my Oncologist is, so they have all my info. The Dr told me pretty early on that they were going to admit me. I was put on IV antibiotics and admitted to the hospital. So I get chronic UTI's for the last few years. Never had one when I was young. My Urologist has me on a prophylactic medication and doesn't keep me on antibiotics because my UTI's typically don't present with symptoms unless they get real bad or I happen to need a urine test. So my urine didn't look too suspicious considering my fever and high heart rate (2 sepsis markers). After being admitted, the Internal Med Dr. went over everything and wanted to look at my stomach/organs so he ordered at CT scan. They did blood cultures, urine cultures and kept me on IV antibiotics. After one of the first antibiotics my scalp got extremely itchy. Mind you I am "cold capping" so I have been very gentle with my hair and scalp and I needed to scratch the hell out of it! It also looked like I was getting red and swollen at my forehead so I was given Benadryl after that. Future drips of that medication were given slower which didn't cause a reaction. I was also given daily injections of Heparin for blood clots, injections in the stomach. CT scan showed some bladder markers that looked like infection, my white blood count was very high. By this morning my numbers were trending in the right direction, I was feeling much better so they released me with another antibiotic for 5 more days. I hate taking antibiotics, especially these strong ones but the chemo poison is worse so….how does a UTI survive chemo lol.

Whew what a weekend. Sepsis is a very scary thing I didn't know much about. It was so important that I got to the hospital quickly. Haven't spoken to my Oncologist yet on how we move forward from here to be sure I stay infection free for the remainder…thankfully I have one more chemo to go in a week and a half.

If you get a fever like this, get to the ER. Hope every one is managing well this weekend. I'm so happy to be back home. 😷

@ebfitzy Congrats on finishing chemo!! I get wanting to just hightail it outta there! My hubby was more excited for me to ring the bell than I was. He went through a wicked course of chemo and radiation five years ago, so I think he was having ptsd during my infusions!

As for the hair, mine never fully fell out. I had a lot of stubble and wispy white hairs throughout chemo that continued to grow after I shaved my head. Now I look like I rubbed a latex balloon on my head! The white hairs are so fine that they stick straight out from my scalp like they have static electricity 😂. I’ve read that about a month after chemo it’ll really start to grow back. I’m assuming it won’t be the healthiest or strongest hair at first, but as the chemo leaves the body it will hopefully go back to its normal texture.

I’m getting my port removed this Thursday and I can’t wait! It started aching a couple of weeks ago and makes sleeping difficult. I’ve been using a product my dermatologist recommended for the scars called Silagen. You can get it with spf and without. There is also a tape you can buy that is impregnated with silicone and cut it to fit the scar (it looks like bandaid tape). I’m going to start using that as soon as my incision site heals. I think it’ll be more effective since it keeps the silicone in place 24/7 and it blocks the sun from hitting the scar while I’m in the pool.

I had my radiation mapping CT scan last week and should start radiation in a couple of weeks. I am so ready to put this all behind me!

Omg. What a scary weekend! I’m so glad you made it to the ER in time and got the care you needed. Sepsis is no joke, and it’s good they acted quickly. I can’t imagine how frustrating it must have been to deal with reactions to the antibiotics, especially with cold capping and trying to protect your hair.

It’s amazing how a UTI could survive chemo, but hopefully, these new antibiotics will clear it up for good. I hope you have a very smooth recovery and an easy final chemo! So glad you’re home and feeling better! ❤️