Starting Chemo May and June 2024 Support Thread
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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.
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@missannabele I’m sorry you struggled so much on the first round of chemo. They can lower the dose by 20%, so don’t give up yet. That made a HUGE difference for me! How many treatments do you have to have and which chemo drugs are you on?
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@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 🥰 🤗
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@missannabele I'm sorry you had such a hard time with the first round. Prayers it gets better for you.
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@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.
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Thanks, guys! Sometimes the hardest part of this cancer business is realizing you had unrealistic expectations of others…. and trying to manage those while on steroids so you stay out of the evening news!
I’m definitely compiling a list of other surgeons in the area to look into, beyond the handful I did initially. I’m staying with this one so I don’t delay dates, and hpping there will be no complications and my expanders and eventual implants with her are non-eventful and go smoothly. But it’s clear I need contingency plans at the ready in case they do not! Maybe she was trying to help manage my expectations. I went in there like a happy puppy, all excited to meet her and be at this milestone. Maybe I radiated “yay! Free boob job!” vibes or something to her.Regardless, I’d still be thankful for C cups, and what’s a few more months of expanders in the grand scheme of things? I mean, of course I hope they look nice and not like something I need to work around and hide for the rest of my days. But the real key and hope is really to be and stay cancer-free.
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@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!
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@justsnapd8 thank you. I need the meds for side effects AND evil spirits i think. I see my doctor tmrw and we will see what she says. I know there is only so much available for treatments and drugs, but holy smokes i need to be locked in a padded room next round!
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@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 🥰🙏
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@bailey.boo That is a let down, sorry you had to deal with that. My situation is different but I hoped to go straight from mastectomy to implant and was told because of previous radiation (26 years ago) they couldn't be sure my skin could handle it either. They were worried about infection and causing more problems for me to deal with. I just wanted the quickest way to be done, even though I really didn't want implants. I wanted to come out of surgery with "something". Ultimately we all decided I should delay reconstruction until after mastectomy. Worked out for the best because I needed chemo. Now considering Diep Flap at a later date. Absolutely do what's best for your health and well-being with a surgeon who feels confident they can give you what you want. I sure understand the let down but after all you are going through, you can handle the wait to get the best for yourself.🌸
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RANG THE BELL YESTERDAY! NO MORE CHEMO FOR ME!!! 🙌🥳
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@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!
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@justsnapd8 I'm so sorry to hear that you're feeling so poorly. My diet has been the only thing that I feel like I can really control and I let it slip a bit the last two weeks and felt pretty awful as a result.
I had my treatment yesterday, 5/6. Getting there! It was the smoothest yet. In and out in 5 hours (as opposed to 7/8 normally!) Bring on 6!! No bell to ring in my hospital so I'll have to do something else. Any ideas?2 -
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
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@justsnapd8 so sorry to hear of your side effect issues getting to you….I sure get it. Is it because its cumulative, the more chemo we get, the harder to deal with the side effects? Mine have also gotten worse…just had 3rd chemo last week and this time my stomach takes longer to get back to normal, my hands and feet never felt different previously but now are not okay. Can't help with what to do because I'm not taking anything because its not really painful. I hope someone else can help with that. My worse now is the taste in my mouth, not sores, just everything tastes so terrible! Even my water is harder to drink. Try a little flavor but everything tastes BAD. For sleep, the Benadryl has really come in handy as needed, have you tried it?
@sarahjunefox awesome that you are one to go!!! I've never heard a bell ring at my treatment hospital so I don't even know if we have one. I wonder what others have done.
@ebfitzy sorry nothing to help with your questions but just want to say congratulations for getting through your chemo 👏👏. I hope someone can help with your concerns. Best to you moving forward!
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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.
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@sarahjunefox That's a great way to think about it "my diet is the only thing I can control". It really is!
@ebfitzy Congrats on getting your last treatment! My RDW is elevated as well, but they haven't said anything about it yet. My WBC and RBC are both low. I have to go for shots today and tomorrow to raise the WBC. I had them 2 weeks ago and they weren't painful. Hoping they won't be this time.
@bythebay Yes, the cumulative effect is what's getting me. I can only take it as symptoms come, but controlling my diet is the best approach. I haven't tried Benadryl for sleep. It can set off restless leg syndrome, so hesitant to go there. Nothing like being super sleepy and legs hurting so you can't sleep. I haven't had to deal with the bad tastes yet. It'll probably happen when they switch my treatment to AC in a few weeks. I heard lemon drop candy is helpful.
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@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!
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@sarahjunefox You should get a bell for your infusion center! Even an old school bell they can keep on a counter will do. Here is an article about how the tradition started in the states and other occasions for ringing it. ❤️🔔
https://www.pennmedicine.org/news/news-blog/2023/february/hope-lives-right-here-redefining-the-cancer-bell
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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?
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Hey @ebfitzy! I'm glad you checked in. I don't remember seeing a bell at my infusion center. I'll have to look for one, though I still have 3 1/2 months of chemo to go. I'm glad you're done though! Congrats!
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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. 😷
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@bythebay Thank you for sharing your experience. I'm glad you're feeling better, but what an awful weekend for you! My paperwork also says to go to the ER when my temp reaches 100.4, and I will if it happens. In the meantime, I'll remain grateful for the 97.3 +/- I see twice a day.
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@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.
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@bythebay Holy moly what a scary experience! So glad you went right to the ER!! And that the meds seem to be working 🙏❤️ I have been so terrified of picking up a normally simple infection for exactly that reason, so I’ve stayed away from people and stores throughout my treatment. Sounds like your infection was maybe another UTI, so not something you could avoid. Did they ever tell you definitively what it was?
Try to rest up and not worry about your next treatment. If they have to postpone it for another week, so be it. It sucks, but the alternative is worse! Keep us posted what the doctor says and how you’re feeling. Sending positive, healing vibes your way 🥰
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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!2 -
I’m so far behind! I hope everyone’s doing great!! 💕
I met with my plastic surgeon a couple of weeks back…. I think I’ve checked in since then. Then I met with my main oncologist for pre-op this week, and she got my surgery date moved back up to Oct 1st 🙂 I feel so much better with that date (vs. Oct 8th), as she originally said I needed to have my surgery within the window of 9/23-10/1 to avoid cancer regrowth. The re-adjusted date puts a wrench in my social events that I went ahead and planned in the meantime, but there will be plenty of time for that next year. So I will not be sending off “the girls” in a low-cut masquerade ball gown after all.
I met with a physical therapist for the first time today, just to get established with a starting baseline. She seems great too, and she’s a breast cancer survivor herself.
Also, @PeaceLoveHappinessDesigns makes the cutest scarves. She’s gifting tie dye head scarves or hats to anyone who has lost their hair due to chemo or another medical condition. She said she has several left, just message her on insta!
https://www.instagram.com/peacelovehappinessdesigns?igsh=bzIxNmppN2JyeGwy
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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! ❤️
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That’s awesome that you’re getting your port removed 🎉🎉🎉—I bet you can’t wait, especially with it causing you so much discomfort. Thanks for the tip on Silagen; I’ll have to check that out. The silicone tape sounds like a great idea, especially for keeping the scar protected while you’re in the pool.
Glad to hear your radiation mapping is done, and you’re almost ready to move on to the next step. You’re so close to putting all this behind you—hang in there! 💕
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