Starting Chemo May and June 2024 Support Thread
Comments
-
hi everyone! Has anyone had rash problems with chemo? I went to the ER one morning when I woke up to my face being all swollen, my eyes were almost swollen shut, and rash all over my face, head and body with the worst being on my face and head. I tried stopping the steroids once and it started returning. Ugh.
2 -
I've had my face flushed, but nothing like this. I'm so sorry you're having to deal with this.
0 -
I’ve only had one issue at a time— rash on scalp, folliculitis, flushed blotchy rashy face, swollen raw crusty eyes or nose, etc. Never all at once, but more so as the chemo rounds climb on. {{{Hugs}}} I hope it clears up and STAYS away for good!
Do you have thrush with it, like a fungal infection? If not, maybe your oncologist could prescribe you some steroid cream. If you haven’t yet, I’d try OTC cortisol cream and see if it responds at all.
0 -
@ebfitzy That looks really uncomfortable and seems pretty severe, too. I’m sorry you’re having that reaction and I would think it would be of concern to your oncology team. What did the oncologist say about the allergic reaction? Also, what chemo are you on?
0 -
thanks @justsnapd8 @bailey.boo and @Love4All for your response. I did reach out to my oncologist and she said if I complete my steroids and they come back still then she wants to see me. I know the last time I had a rash but only on my arms and hands. Wasn’t severe. Let’s hope it just goes away for good! I go for my planning meeting and ct scan on September 9 to prepare for my radiation. I am also getting blood work again on the 5th I believe? Or 3rd to double check those liver enzymes and the calcium levels that were all funky last time. Hopefully it was just the chemo messing things up and nothing more! The calcium being high was most worrisome for me along with the alkaline phosphatase bc those two combined can be associated with bone mets. 😫
3 -
@ebfitzy Nothing like playing the waiting game 😩! I’m sorry you have to deal with the added stress of the rash and the bloodwork. Keep us posted on everything. We’re here if you need to vent or just want some support. Praying the steroids do the trick on your rash and that your blood levels are moving in the right direction 🙏❤️
0 -
Hi everyone! My dear friend is a volunteer at a place called Amor Healing Kitchen here in Charleston, South Carolina that provides free plant based meals to local cancer patients. She just sent me a link to a docuseries called “Healing Kitchen: Let Food Be Thy Medicine” and I’m sharing it below. You can register there to watch the 9 part series for free, and when you use the link to register, Amor Healing Kitchen will receive money to help support their program. Let me know if the link doesn’t work for some reason ❤️
https://amorhealingkitchen.us16.list-manage.com/track/click?u=20de9d31c71a5c8fb239ecf90&id=0bb831208a&e=a122e0c5e93 -
@Love4All I signed up and got the 1st $67 package. Several ladies in my family will be very interested in it, and I did share on our chat. Thanks for sharing!
1 -
thank you @Love4All !
I’m sitting at my cancer center, about to get my 6th and final round of TCHP chemo 🎉
2 -
@bailey.boo im soooo excited for you! 🎉 it’s such an awesome feeling knowing it’s the last time you’ll have to feel like crap. lol it really helps you pull through the side effects.
2 -
@bailey.boo Congrats! I know you're excited to get back to feeling normal! Don't forget to ring the bell (if you choose to)!
1 -
@ebfitzy I hope you are having some relief by today, so sorry. We just don't know what to expect daily, it can be nerve-racking for sure. I'm told its cumulative so side effects may get worse as we move along, I know mine have.
@Love4All thanks for the link, I will check it out!
@bailey.boo congratulations on your last day of chemo! 🌸 it kind of feels unreal that its really over imo.
🔔 I too had my last chemo yesterday! I left there feeling relief and exhaustion. Praying my side effects don't get much worse, that last round was much worse but the infection that put me in the hospital made it awful. I realized when I got home that my Oncologist never mentioned my port removal, I sent them a message. I don't look forward to that for sure! Sending good wishes to all of you 💝
2 -
Strangely, my medical oncologist held up a hand when I asked where the bell was and said we don’t ring the bell yet, only after ongoing targeted treatment is done. That will be like a year. 🤷♀️ But ok… I didn’t feel strongly enough about it to insist!
1 -
Congrats on finishing your last chemo! 🎊I know that mix of relief and exhaustion well. I’m hoping the side effects stay manageable for us both— you’ve been through a lot, especially with that infection.
I totally get not looking forward to the port removal. Hopefully, your oncologist gets back to you quickly with some details. Mine told me at my recent pre-op appt that I’d be keeping it for 5 years! That shocked me.
Sending you all the best as you recover, and here’s to brighter days ahead for all of us! 🩷🙏🏼
2 -
How are you feeling? I hope everything is clearing up by now! 🙏🏼🩷
0 -
Congratulations to everyone who finished up chemo 🥳🥳🥳🙌🙌🙌!! Time to turn the page and put that chapter behind you!
I had my port removed two and a half weeks after my last chemo. The doctor never mentioned getting it out, so I asked at my follow-up appointment. He said I could get it out any time I wanted, so I was like how about yesterday?! It’s still pretty achy, but I’m only nine days post-op. They used betadine this time (since I had an allergic reaction to the chlorhexidine) and I developed ANOTHER itchy rash 🤬. Oh well!
The chemo also put me into menopause, so I’m having lots of hot flashes. I’m 52, so it was coming anyway, but it’s still annoying on top of all the other side effects.
@ebfitzy Speaking of rashes, how is yours doing??
0 -
@bailey.boo and @Love4All my rash is finally gone! I’m also having hot flashes all the time and I’m 36 now, but I guess I might as well get used to it because after radiation I have to start hormone treatment. 😫 I feel like that’s going to be the worst part. I hope I’m wrong. lol
3 -
BIG CONGRATS on having your port removed @Love4All! I hope all of your achiness and rash subsides very soon!
Last week, I asked my main oncologist at my pre-op appt if my port would be removed during my DMX. She said I’d need to keep it in 5 years! 🙀 Seems excessive, but the reality is that HER2+, if it recurs, usually recurs within the first 5 years. And I had such a bad allergic reaction getting my port in. It’s probably better this way. It’s a definite love-hate relationship.
The cancer is ER/PR- for me, but the women in my family go through early menopause, so I’ve been done with it for a couple of years now. I just turned 51. I hope it doesn’t last too much longer for you!
And I’m so glad your rash is better @ebfitzy! I’m with you on not looking forward to the ongoing treatment. It’s not hormones, but I hate getting my phesgo shot for HER2+. Stings even worse than a vitamin C shot!
1 -
@bailey.boo I think different infusion centers have different protocols on the bell. I've read that some don't have a bell at all because hearing the ringing has an adverse effect on patients who are still enduring chemo. I want to ring the bell when I'm done with chemo (3 more months). And I'll still have a DMX and radiation to deal with after chemo.
Ladies, I feel for you with the hot flashes! I went into menopause naturally, in my mid 40's. It was miserable! You can't plan for the hot flashes; they just attack whenever. I just knew I was going to self-combust at any moment.
Have a wonderful weekend!
2 -
FYI, the hot flashes won’t last forever. My surgeon told me they are only temporary, just like they would be when going through menopause naturally. I guess that’s something to look forward to…. No hot flashes and no periods!
0 -
@Love4All Happy to hear you were able to get your port removed! Mine is staying in until May 2025. Question: Did they say anything about it aching? Mine has been aching for about a month. I haven't mentioned it to my oncologist because I don't want to seem "wimpy". Maybe it is supposed to be uncomfortable?
0 -
Mine isn’t achy unless recently used, but sometimes it gets itchy and a little pink. I go in weekly for fluids and atropine, and I’ve mentioned it to the nurses. They seemed okay once I mentioned, “but when I take steroids for the next chemo round, it goes away.”
I’ve been wondering it maybe it’s just forming a callous and the skin is changing. My older son, when he had leukemia as a toddler, formed a scar with his. He was on a 4-yr chemo protocol and didn’t get it removed until well after ongoing treatment, so he had it in for a good 6 years. I’ve looked through my journals and cant find anything on when the tougher skin formed. This was also inserted in ‘95, and they may do it differently now.0 -
@amesisland715 Yes, my port was achy. It started around two months after it was placed. I got to the point where it was keeping me awake at night, so I was so happy to get it out. I never mentioned it to my doctors because I knew I was getting it out at the end of my four rounds of chemo.
0 -
Huge congrats to everyone finishing chemo (and sending love to those still goin!!)
I had my last treatment yesterday and it was SO emotional. We don't have a bell, but we had a bit of a celebration last night at home. Balloons, confetti, the dog in a hat, green juice in cocktail glasses and my son got me a medal! 😁 Quite the party! I broke my super strict diet for the first time in 16 weeks and was SO ill last night. A coincidence? Perhaps, but I choose not to believe it. A few more weeks of strict eating to get this mustard gas outta me!!
Is anyone doing hormone therapy? Anastrozole? or Tamoxifen? Maybe there is another chat thread for that? I find out my course in 6 weeks. Until then, no doctors appointments fingers crossed.
4 -
@sarahjunefox - Congratulations on finishing chemo! It’s wonderful that you celebrated at home. Wishing you continued strength and progress!
The Mods
0 -
BIG CONGRATS on finishing your last chemo! It sounds like you had an amazing celebration—balloons, confetti, and even the dog in a hat! Adorable! Your son getting you a medal is just the sweetest thing. 🩷
Sorry to hear you got sick! My body also revolts if I veer from my diet. I have to keep it bland and in tiny portions. I can’t wait until I can just wake up and sip coffee on the patio without regretting it, or not spend the night in the bathroom because I ate a few bites of chicken pot pie and it was too rich (i.e., last night!). 🥴 Luckily, I go in for fluids and atropine today!
Hormone therapy is not a part of my plan that I know of— the plan is ongoing phesgo shots— but it seems like the pathology is the big puzzle piece for dictating the rest of this journey. I’m scheduled for surgery on 10/1.
It’s so good to hear from you! 💕 I hope you can find out your next steps fast, and fingers crossed for no more doctor appointments for a while!
1 -
@sarahjunefox Yes, I’m going to be on hormone blockers for five to ten years, but they’re not starting me until after radiation (which will begin next Tuesday). I suggest you get a bone scan before beginning the meds because they cause potentially serious bone loss. It’s good to get a baseline scan before you start so they can monitor you through the years.
So happy for you finishing chemo! 🥳❤️
2 -
@sarahjunefox Congrats on finishing your chemo! Looks like y'all had a great celebration at home. Celebrating with those you love is the way to go.
1 -
Love4All Yes I had the bone scan. Gawd these side effects are so brutal!!
2 -
Day 10 post-last-chemo-round, and I managed to do over a week’s worth of piled-up laundry, clean up the place some, and turn out a proper Sunday dinner— yankee pot roast with all the trimmings, even Yorkshire puddings. I’m still getting out of breath and dizzy more than the other times, and my extremities still feel extra achy and heavy. I think the insomnia has been longer and worse than all of the other rounds combined! (But I had the chemo reaction this time and did get extra steroids by IV because of it.) But, overall, I think I’m starting to emerge on the other side 🤗🙏🏼
I hope everyone is having a fantastic weekend!
4
