July 2020 chemo club
Comments
-
Melbo....Happy to hear your pain is bearable. And a big virtual hug 🤗 to your husband for taking such good care of you! I have 9ne just like that who I haven't thanked enough these last 7 months or maybe I should say 40 years!!! Rest and heal!!
0 -
pathology confirmed that I had a complete response to chemo! Woohoo!
On day 4 post surgery I am sick and tired of the drains, but I am in very little pain. Mostly I’m just uncomfortable and itchy from the bandages and binder. I will be very happy to get all of it removed on Monday.
0 -
that is such great news melbo! My pathology may take 2 weeks, as they said it’s taking longer due to hospital staff out because of covid. Glad you are feeling well. My drains are a pain, otherwise I feel fairly good. I have the most pain underneath my non cancer side, right at the top of my ribs. I don’t know if this is due to a drain or the tissue expander. It gets really sore in the mornings after I’ve been sleeping. I have a call into plastics to see if I can make an appointment to have drains removed (I will be having them removed here since I’m 2 hours away from their office.) and see if I can get more pain pills. I do ok with Tylenol during the day, but need a little more in the morning and at night...
Merry Christmas Eve to you all!!!
0 -
Melbo...Congrats!!! Isn't it a great feeling to know thetreatment worked. Best Christmas gift! Merry Christmas to you!
0 -
mtspacekace...Merry Christmas to you! Prayers your Pathology comes back with good news. I was fortunate not to have drains with my surgery. Hope your come out soon!
0 -
I hope you ladies all had an amazing holiday! We stayed low key, snd celebrated just my husband and I. He made cinnamon rolls on his traeger, and then smoked a brisket and Mac n cheese. It was a really good relaxing day of healing. Today I feel so good, just 1 week post bmx. Definitely blessed and in great spirits! It’s so nice to be able to eat and drink and taste and not feel sick. My hair is coming back, it looks like I have a 5:00 shadow.
❤️❤️❤️
0 -
mtspacekace...jealous of your 5 o'clock shadow. Looks like mine is coming in quite white. I hope my hair picks up it's pace! Merry Christmas!
0 -
Hello, and question from a member of the November chemo group.
The hair that I have left is about one inch right now and there’s one longer patch in front on top that is uncomfortable.Question: if your hair/scalp started hurting, did the pain go away when you cut your hair, or did you have to shave it to get the pain to go away? Is there any chance the discomfort will just go away over time if I leave my hair alone?
Thanks
0 -
sharon0706: when my scalp started to hurt I had my hairdresser buzz it off to about 1/4” using a guard. Then I would use a sticky lint roller, and roller my head before and after I showered because the hair got everywhere...once most of the hair fell out, it felt so much better! I eventually shaved it using a razor because I had a few stragglers and it looked funny. Using a silk pillowcase also seemed to help with it feeling better.
0 -
Kmom57, I hope my oophorectomy recovery goes as well as yours. Though my doctor said no lifting over 10 pounds for 2 months.
0 -
Anyone still dealing with neuropathy? Mine seems to be getting better in my fingers but my toes...oh how they bother me! I still am holding out hope they recover! Happy New Year to all!!!🍾🥂🍷
0 -
sharon0806, my scalp was sensitive for a few weeks and eventually returned to normal. I buzzed it but never fully shaved it.
0 -
Iamloved, I hope you don’t mind me popping into your group. I finished chemo in September and had neuropathy in my hands and feet. Just like you, my hands are getting better. It’s only the fingertips that are still numb...cracking eggs has been a challenge, with many eggs lost in the attempt
. But they are getting better. Similar to you, my feet are a different story. The neuropathy was slowly creeping up my legs. We tried neurotin, which did slow the spread. I came off of it last month though, as I developed a cough and we are hoping that being off the meds will help the cough. My MO wanted to send me for a scan, just to be safe but I wanted to see if stopping the meds would help. I finished chemo in September, so I think I may be a few months ahead of you, but wanted you to know you’re not alone. My MO tells me not to give up hope and that the feet are almost always slower to come back, so I am still hopeful.
I hope you don’t mind me jumping in. My biggest regret is that I didn’t find this site sooner. I would’ve loved to have the support during the scary early days and especially through chemo. Sending you best wishes and hoping we can both feel our feet again in 2021!
0 -
welcome Poppy. I don’t think anyone minds you jumping in.
My fingertips are still numb, but luckily it’s mostly just a lossof sensation and I’m able to still do most things as long as I pay attention. I was one of the later ones in this group though, so I’m still only about 7 weeks out from my last chemo.
0 -
I'm only 2.5 weeks out from my last chemo. I had some very slight neuropathy which has gone away, but still have fatigue and nail pain. I was hoping the side effects would go away by now but suppose I need to be more patient
0 -
Poppy_90...Absolutely not...welcome! My oncologist said too to give it time. I had surgery December 1 and it has been a nice break not to have chemo side effects. Radiation starting Jan 25 so I will continue to be optimistic this neuropathy will go away. Happy New Year to you!
0 -
Dubhain, congrats (way late) on finishing up chemo! So your oncologist suggested the hysterectomy/oophorectomy? I'd like mine to consider that in lieu of estrogen blocking drugs for eternity, but I'm not even sure if that's something that's done.
0 -
Just checking in with you ladies. I had my follow up appointments today. Surgeon said that my lymph nodes were clear, I had clear margins (although it was less than 1mm..but clear) and they removed all of the 1cm cancer that was left. Sooooo...I guess I’m cancer free!
Waiting to hear from my mo to see if I should do radiation. (Surgeon said not normally since nodes were clear...but with my age, HER2 status, and it was close to the skin...that maybe it would be recommended.
Also had PT, I didn’t realize there was so much to recovery and taking care of the lymph system. Got to pick out a cool sleeve, snd got new excercises to do in 2 weeks. I got strict instructions to take it easy for another 10 days...and start working back into activities.
But feeling glad the cancer is gone! Now onto herceptin/perjeta
0 -
Congrats with the great news mtspacekace! Wooo Hooo!
0 -
Good afternoon everyone! I am finished with TCHP and recovering well from my double mastectomy (6 weeks out). I am now onto tamoxifen and herceptin and looking for the new year ahead! My big question is if any of y’all have received or are getting the covid vaccine? I am able to get it this week but am still trying to decide. Would love to hear what your oncologists are recommending and if you know anyone who has received it while receiving treatment. Thanks so much!
0 -
you know how some days just seem to slap you in the face? I had my consult with the radiation oncologist today and apparently they think I did have a positive lymph node early on. The original biopsy didn't show cancer, but it reacted to chemo like it was cancerous. Therefore they are assuming it was cancerous and will radiate my lymph nodes as well to be sure. If it was cancerous it moves me to stage 2B and almost to stage 3a since my original big tumor was 2.8 cm. (The cutoff for 3a is a 3xm tumor and 1 lymph node.) the whole thing has messed with my mind quite a bit.
Which, made the phone call I got later from my OB-GYN a complete mind f***. Apparently the Pap smear I had in August (six effing months ago!!) was abnormal and they need me to get a colposcopy to rule out HSIL and/or cervical cancer. I'm sure it's nothing. But that's also what I said about the lump in my breast.
Cdw — I haven't discussed with my oncologist yet, but I assume they will recommend it since they recommended I get the regular flu vaccine even when I was in the middle of chemo. I will see my oncologist tomorrow and it's on my list of questions for him
0 -
melbo...I’m sorry to hear about all your shitty news. I will be praying that all tests come back in the clear!
I have learned that they are recommending radiation for me...my age, HER2, didn’t have pcr, and less than 1mm from skin are the reasons. They cant give me any stats because I’m such a rare case apparently. I’m really disappointed that everything I’m doing to get rid of this cancer isn’t working. Is my oncologist doing a good job? I’m starting to get really discouraged. What if I do all of this shit and it doesn’t work, what if I’m one of those people that it ends up getting. I have been so positive throughout all of this...now I’m feeling like the doctors are just telling me stuff to keep my hopes up. Nothing ever works in my favor... I am about shit full of being positive and fighting.
I guess I’m going to do the radiation, even though it’s 2 hours away from home and I’ll be staying there most days. 5 weeks is a long time to be away from my dogs...and hubby...even though I will most likely come home once during the week, and weekends...as long as the weather is good.
0 -
it occurred to me this morning that I had started chemo right before I had that pap six months this ago. I had asked at the time if it was okay to do the pap with the chemo and was told it wouldn’t be an issue. A thirty second google search this morning showed that chemo can cause an abnormal pap. I assume that’s why my ob waited six months to reschedule me — to make sure I was off chemo — but that’s a guess since she was shit at explaining.
Mtspacekace — sometimes the only thing we can do is put one foot in front of another. We had very similar diagnosis and had the same chemo treatment. The only difference is I chose a lumpectomy + radiation instead of the more aggressive mastectomy. It truly sucks that you are throwing everything you can at your cancer and it’s still causing problems. I truly hope that radiation knocks out the last of your cancer cells and that you can manage treatment despite the awful drive
0 -
melbo...doctors said I wasn’t a candidate for lumpectomy because I had multi focal cancer, plus a vus in a brca gene was kind of a red flag... I figured if they’re taking 1, might as well make it even... I can’t believe they told you pap would be fine while on chemo...but I guess that is a lot of info to know.
I have apt with my oncologist tomorrow, I’m thinking he is going to say I need kadcyla for a year......ugh, I wanted to be done in July.
0 -
I can sympathize with your disappointment about the thought of taking kadclya. I had my regular Herceptin/Perjeta infusion yesterday and just that was enough to give me the cancer blues and make me frustrated and sad that I have cancer and still have treatment until at least August. The idea that I would have to go on another chemo drug would likely put me in a funk for a long time. I imagine it’s hugely frustrating to see so many people posting about their PCRs after chemo. There are no good words for the situation. It just plain sucks.
0 -
Sadly I don't think we are ever done. We keep running on the hamster wheel called cancer. It starts with the diagnosis. Mammograms ultrasounds ct scans MRIs biopsies just to tell us we have cancer. Next up (for me) neoadjuvant chemotherapy. 4 1/2 months of feeling like crap. Yea ring the bell...I am done! Oh uh wait...surgery the week I finally start feeling good. Ok good results yea! No lymph nodes involved!! Things are winding down. Oh hey we are going to radiate those lymph nodes just in case they have cancer cells so you have a real good chance of developing lymphedema but there treatments that can help with that. Oh and don't forget to come by every 3 weeks to get your herceptin infusion for the next 8 months. So now when I finish radiation I can start some wonderful drugs that will block estrogen and keep the cancer from coming back. 5 to 10 years of joint pain hot flashes mood swings but I can manage thoses side effects with other drugs. And just keep coming back for more mammograms ultrasounds cts MRIs and bone scans...in case the wonderful estrogen blockers are sucking your bones dry but that might be reversible. I try not to go to this unhappy place but somedays it just makes me angry that we all got a lousy hand to play! 🤗🤗🤗 to all who are running on the wheel!
0 -
...Kadcyla for 14 cycles it is. At least, hopefully I tolerate it well and will be done this year. I really don't want to have to pay my full deductible again next year.
Headed for radiation next week, hopefully I've healed enough that I can start on the 25th...
I got the call, I get my rona shot tomorrow!
Just another day running on this hamster wheel of life.
Edit to add:
Anyone else have issues with their nails? I’m afraid I’m going to lose 1 or both big toe nails, and right now...both pinky fingernails are lifting. It looks like they are growing and haven’t detached clear to the cuticle yet, but one toenail is detached along one side entirely. This is sucky. I have searched on here and it seems to be a se, I’m wondering if it ends up being painful or how long it takes to grow back..
0 -
Melbo, I had the similar situation as you. I saw my radiotherapy oncologist and she explained to me I actually had positive lymph node based on my PET. They did a fine needle lymph node biopsy before chemo started that was negative but there was lymph node in the inner chest line showing bright under PET and they didn’t biopsy it. My post op PET shows it’s gone so it reacted to chemo and proved it was involved.
I am due to start radiation tomorrow for 5 weeks and continue with Herceptin till end of the year.
Looking at the bright side, there are more and more new drugs coming out being effective so the historical stats are no longer applicable. Has anyone heard about this new HER2+ vaccine? I am keen to join the trial if it’s available.
0 -
thanks for the link evergreenman. I sent it to my mom who is a nurse — she runs the clinical trial program for her hospital so I’m curious what she thinks.
Mtspacekace—a few of my nails are also a mess, but I haven’t lost any yet. On the other hand, 8 weeks after finishing chemo my eyebrows completely fell out, so that’s fin
0 -
MTS, nice to meet you. I hope you don’t mind me jumping into your group. I’m with you on the nails. Definitely going to lose both big toe nails. It’s really tender and painful. I still try to walk every day, but it’s impacting how long I can walk for. So frustrating since I’m trying to lose the chemo bellya,
My fingernails were splitting too, but someone recommended OPI Natural nail strengthener which has helped a lot. The big toe nails are too far gone, but thought I would share in case you were having any splitting, peeling or breaking. It has helped a lot. Losing nails andNeuropathy is not fun! I was diagnosed just about a month before you. What a year, right.
Just wanted to jump in and say hello and share that you’re definitely not alone!
0
