July 2020 chemo club
Comments
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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.
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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.
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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!
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...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..
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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.
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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
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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!
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thank you Poppy! I did just happen to pick up some of the OPI stuff last week. I haven’t had a chance to put it on my nails yet, but I need to...they are very dry and cracky! I’m glad it helps!
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Checking in. How are you guys?
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I have finished 8 of 25 radiation treatments. Looking forward to being done a few weeks from now. I’ll likely be getting a hysterectomy in March or April. Need to decide between robotic or laparoscopic. Anyone have any thoughts on which would be better/less risk? I get the feeling it’s similar but I haven’t had a chance to really look into it yet.
Hair is really starting to come back. It’s getting thicker but looks a bit like an emu right now
eyebrows also making a comeback. Lashes still a bit sparse/stubby
Hope everyone is doing well!
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I had my radiation ct scans last Friday and will start my radiation treatments on 12 February. I’ve been reading through the recent radiation forums here to try to get an idea of what I can expect for side effects. I really don’t want a lot of fatigue again.
A few of my fingernails and toenails are a little gnarly looking, but I haven’t lost any of them yet. My hair is fuzzy all over now and my eyebrows are just starting to come back in. I never fully lost my eye lashes, but boy are they scruffy and sparse.
I occasionally look at the forums here for people going through chemo right now in case I can offer advice on something, but usually after reading through a couple of posts I have to stop because I hate remembering how awful chemo was. Then I feel bad for thinking it was so awful because my experience wasn’t as bad as some people had it. I know that’s ridiculous too — but sometimes you just can’t argue much with your feelings
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I just finished radiation 4 of 25. So far I feel good! Just a little extra tired, and it was recommended by my doctor to only take 30 minute naps as to not ruin my night time sleep...and prioritize things, so the most important get done in case I get too tired. The roads have been good for both of my trips, it’s looking like snow on Wednesday when I was planning on going home...typical! My skin is holding up well, so far! I got a prescription creme to put on nightly, and a whole bag of different creams and aloes from my dr. I thought that was nice of them.
I’m still waiting for my oncologist nurse to call and schedule my kadcyla infusion. I’m not going to pressure them, because I don’t want to start until the 15th. Then I will only have to get 1 treatment at the clinic here where I get radiation, and can do the rest at home. I’m quite fond of my infusion nurses at home.My hair is growing back, slowly...I can’t wait to not have to wear a beanie, right now the little hairs just stick straight up! They’re probably a little less than 1/4”. My lashes are coming back, and I didn’t completely lose my eyebrows...but what I did lose is coming back. In fact, I’ve got hair coming back everywhere, in full force! I actually made an appointment at a waxing salon tomorrow for a waxing facial. I’ve got a nice neck beard....what the heck?! Side effects are the gift that just keeps giving! Also. I’m losing one big toenail. Gah.
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mtspacekace I hear ya on the hair issue. Wish the hair on my head grew like the peach fuzz on my face! Did my own dermablading but did have a salon wax my eyebrows. My gosh they are like my hubby's... thick and coarse! I am hoping within the next month to go with out a cap or wig. But I find my head gets quite cold and I want a beanie on even in the hotel. I am having 1 herceptin treatment here at mayo and then will have one back home the week i get back. I can't imagine a life without appointments! I guess its the new norm.
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I just have to reply as well about the tiny peach fuzz facial hair! I had no idea that was a thing and I definitely have it- helps to know I am not the only one! I am getting more used to my super short hair- about 13 weeks since my last chemo and it is almost completely white.
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Trynryan...You and your hair looks great! I am about the same timeline and mine isn't that long yet.And mine is a horrible salt and pepper mix. 🤦Oh well at least is coming back.
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Hi Melbo
Our cancer and treatments seem almost identical so I wanted to connect with you. You are ahead of me in treatment, I just started chemo Jan 28, 2021. I never thought the 1st round would hit me this hard. Isn't the first couple supposed to be the easiest? My whole GI tract is so inflamed. I already had problems with GERD (heartburn) but now it's constant. Stomach feels so swollen and drinking a lot of water is so hard. I feel like my stomach is completely full most of the time. Then there's the diarrhea but Imodium seems to help with that. I've got a raw mouth with thrush. The bright side is the anti nausea have worked beautifully. Of course there's the fatigue and I'm still trying to find things to eat that don't have sugar but sit well in my stomach.
i don't tell you all this to just complain but to get some insight from you on how much worse this will get over the next 5 treatments. I so appreciate any help you can give me.God bless you and I pray your journey gets better as you near the end of your treatments.
Darlene
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AZgirl...I can offer this bit of advice for your mouth pain. Vitamin A drops. I got the from my Naturopathic dr after my first treatment and did not have any mouth issues again. I used my sonic care toothbrush thru my treatments and no issues. I am sorry you are struggling. I had GI issues but they took the prejeta out and that made all the difference.
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AZGirl -- in a lot of ways the first round was the worst because at the very least you get more familiar with the side effects and how to combat them. For instance, I only had mouth sores for the first treatment. My oncologist prescribed magic mouthwash (the official name) which at least numbed everything up and helped. After that I got really diligent about rinsing my mouth with a baking soda/salt water mix every time I ate something. I hated the rinse. I hated how it tasted and I hated that I had to do it so constantly, but I hated the mouth sores more.
I ended up drinking pedialyte mixed with water, partly because I couldn't stomach anything else and it tasted okay, and partly to make sure my electrolytes didn't get too out of whack because of the diarrhea. It was a constant struggle to make myself drink enough water, but I tried to get at least 60oz every day. I went into round three a little bit dehydrated and felt like a lot of crap that round -- it was the worst round after round one. Rounds four, five, and six weren't as bad as I expected them to be. I spent a few days feeling sick like I had the flu and I was tired and "meh" a lot, but I didn't sleep for days on end and I was somewhat functional.
The whole experience sucks, but you can get through it. Just keep putting one foot in front of the other. And make sure you call your oncologist's office when you are struggling with side effects because they almost always have some sort of prescription or recommendation that can help.
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Iamloved,
Thank you for the recommendation. Fortunately my MO prescribed some mouth rinse for me and that has helped immensely. Blessings and continued healing.
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Melbo
First of all I’ve got to say your dogs are just too cute! My husband and I have 3 mini dachshunds and they are the loves of our life.
You seem to have experienced the same struggles as I have. I brush my teeth a lot and only with baking soda, toothpaste is so not happening for me right now. And then the mouth rinse is a life saver. The GI issues were the worst but like you said I’ll know better what to do next round to minimize some of the side effects. The drinking enough water thing is a constant struggle. I’m trying to get down 42oz and that is a challenge. I also am mixing with pedialyte and that helps a bit. But from what everyone says, more water is key to feeling better, so I’ll press on.
I so appreciate your willingness to respond and that you tell it like it is and don’t try to sugar coat it. It does suck and I have so much more empathy and admiration for all the other cancer survivors out there. I worked 40 years as a CT and MRI technologist and encountered people everyday going through cancer treatment. But I had no idea what they really went through. May God’s grace surround and comfort all who walk this difficult road.Thank you for the encouragement to keep moving forward. How are you doing since you last surgery and radiation treatments?
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AZgirl — our French Bulldogs have been an immense comfort throughout this diagnosis. When I was going through chemo the bigger of the two was constantly on my lap and napping with me. Dachshunds are also adorable and great dogs.
I have been doing pretty good. I am finely mostly healed from surgery and will be starting radiation next week. I’m not looking forward to the fatigue of radiation or any other potential side effects, but I keep reminding myself that it should be way easier than chemo.
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AZGirl... hang in there! I had what sounds like similar GI issues--abdominal fullness and pain after my first chemo. It was awful and I ended up being hospitalized with febrile neutropenia. I tried to be super careful about what I ate/drank after that--my appetite was good but risk of infection was high, so I cooked my fruits and veggies and avoided foods that cause gas. I ate a lot of sauteed spinach and grilled zucchini! Hopefully you will fare better in your future chemo rounds. My second and third rounds were the easiest for me. Also, I sucked on ice chips during subsequent chemos--this seemed to help with the mouth issues but it could have been completely coincidental.
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Hi everyone
It has been quiet for a while. Guess everyone has been well and busy enjoying a fuller life post all the treatments.
I finished radiotherapy a month ago after the lumpectomy in December. Occasionally I am still feeling soreness around the surgery area. Just wondering if anyone is having the same issue? My radiotherapist thinks it’s the scar tissue and suggested I see a physiotherapist and may use laser. Has anyone done it?
All the bes
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Hi Evergreenman,
I think several women who used to post in this thread would still be receiving treatments-radiation, Herceptin/Perjeta infusions, aromatase inhibitors, etc. They may be posting in other threads related to those treatments.
That's great you finished radiation therapy a month ago. 🔔👏🏻👍🏻🎊🎉
I am sorry to read you are feeling soreness in the surgical area. Yes, I experienced it, too, but stretching exercises relieved it. I hope the laser treatments are helpful for you.
Wishing you and anyone else reading this a pleasant spring and the best possible outcomes wherever you are in this whole process.
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