Starting Chemo July 2019
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Hi ~ I hope everyone is hanging in there. I thought I’d share this quote with you, seems appropriate for all of us. Keep your heads up and be positive! Keeping everyone in my thoughts & prayers.
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hi everyone! I feel like I’ve been in training for this lock down for five months. Chemo was hard for me and I didn’t leave the house much. I just started getting my energy back, was attending two exercise programs and had two straight weeks of being busy and social again and then we hunkered down to the extreme. I’m still getting Herceptin infusions every three weeks and the hospital is extremely somber and quiet. I’m disappointed, but happy to be feeling pretty good and getting lots of stuff done around the house that I had let slide. Are any of you in Herceptin still?
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Hi all,
Shellgirl, I am taking Kadcyla now every three weeks. Kadcyla is an antibody drug that has herceptin in it. I’m tolerating it well with just a day or two of feeling a bit tired after the infusion. Otherwise, I am healing from radiation which did a number on my upper chest and collarbone area. I am feeling pretty good and just hunkering down now that I feel like going out! Yesterday was kind of sad as it was the day my hubby and I were to go to Cabo San Lucas with our oldest son and his wife and our grandsons. We had been planning this for months but obviously had to cancel. I hope everyone is tolerating staying home and working from home. I think of you all often and pray for continued healing.
Stay 💪
Julie
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melmax how are you feeling?
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Jjpope1 thanks for checking on me. My body still isn't cooperating with my wishes for recovery and I haven't felt like talking about it. Symptoms improved after stopping AI but not all so I had Covid-19 test and waiting for result. Honestly, I'm more concerned about not taking the AI than the result of that test.
Also, don't know if I told you all but my heart started this strange beating during chemo. They did EKGs several times during different stages of treatments and said everything was fine. Thought it was getting better but unfortunately, no. Oncologist and primary care appts next week. Will be getting a portable machine to track heart for a few days. Along with everything else, this is most worrisome. Hope you all are doing well. 😊💜
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melmax, I’m so sorry you’re having such a hard time 😩 it sucks I know, esp going through everything else. I hope they can figure out what’s going on with your heart. Keep us posted please!
All is good in lockdown NC 🥴🥴 the prison is killing us with the numbers, esp when they continue to move inmates. I don’t get why they continue to transport them and infect another unit. Last I saw they were up to 500 and some at the unit I used to work at in my home town. Makes no sense to me other than they are catering to the inmates. I am so glad and thankful I’m out of there and work with the highway patrol now! I’m still working and have a paycheck so I am thankful for that. They still aren’t at school and I don’t think they will go back. I feel so sorry for my son, we both work, he has to do his stuff online, no sports, no 8th grade formal or graduation, but we did register him for his freshman year 😳😳😢😢 that was a reality check for me. I can’t believe he’s going into the 9th grade. Still waiting to hear about part 2 of reconstruction surgery. I feel great, hair is growing good (curling but good) the only thing I have that bugs me is when I have a itch in my breast area I can scratch till the cows come home and don’t feel a damn thing 🤬🤬 that is so annoying.
I hope we all continue to keep in touch and post or don’t forget if you want to join our fb group send me a private message here (so I know it’s one of us). I love hearing from y’all and how you are doing. It also shows anyone that is new and reading our posts that we went through hell and are on another side of it and making it. Hopefully it helps them and gives them something to look forward to.
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update: covid test was negative 🙌🙌
jjpope1 Don’t blink - the high school years go by fast.My son is a senior - no graduation 🙁 but he’s taking it well.
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melmax I am so sorry! All the seniors will miss out on a lot, hopefully they will be able to make up some stuff during the summer.
Our 8th graders are missing out too but I’m hoping we can do the 8th grade formal and a small graduation and party for them during the summer.
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Melmax glad your covid test was negative. Hope you get good news from the heart monitoring. My son took a medication that didn't have heart palpatations as a known SE and then he had a heart palps. so he wore a monitor for a month. Nothing wrong he just had an unknown SE. So the heart issue could def. be nothing serious.
I get itching sometimes right when I am about to fall alseep and it is like inside under the scar. Can't itch it. it's common hear. School is out in IL for the summer. Major bummer for the seniors. My senior doesn't seem to care too much. I hope that he will be able to work this summer somehow. My oldest is struggling with online college --it's harder for him to focus at home than if he was able to go to classes - he has ADHD. My youngest will be 16 in June and is very bummed she won't be able to have the big sweet 16 party with all her friends like she wanted. My husband is working from home and I am not working but I get a reduced paycheck for now. It could be a lot worse for us, I'm still often depressed but do what I can to keep my brain occupied in a positive way. One of my SIL currently has covid. I am concerned for her.
It's Sunday and the sun is out so I have that going for me!
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please remember to send me a private message if you are wanting to join the fb group. Not trying to be picky, I want to ensure that it is one of us that is joining and that our privacy is protected. I can see the user name through private message and I can verify it’s you. Thanks!
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At the doctor’soffice now getting port removed. Wish me luck!
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melmax 🙌🏼🙌🏼🙌🏼 So excited for you! I know you are glad that thing is gone. I can’t tell you what to expect because they took mine out during my DIEP. Good luck 💕💕
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Three deep breaths while they were numbing the area, a lot of tugging, and 10 minutes later it was done. Dissolving stitches were used and as long as I don't have any complications, I won't see him again until next year. 🙌🙌
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Awesome Day Melmax!
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melmax, great news and I’m glad it went well!!
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I’m still on herceptin and itchiness is really bad. I have scabs from scratching at night. It’s so difficult to explain to others bc it’s not a rash. Three more of these tx and I cannot wait! It seems to be cumulative for me as this was not an issue early on.
Melmax great to hear your port is out! So exciting!
This spring lockdown is difficult bc last spring I and assume most of you were dealing with diagnosis and surgeries. Enjoying the time at home but missing my friends and extended family terribly. Plus the loss of income after missing work for cancer treatment is
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Ruby This is totally not the same but I feel for you- sometimes right when I am about to fall asleep I get itching like inside below my scars and it's so maddening! I can't relieve it and I was just about to sleep! -
Yes and yea and yes to spring lockdown. It's a real rip off for us. We've already given up a good chunk of a year! Rude! :-)
Hope everyone had a good day today!
-Victoria
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Hello Ladies! Just read through the posts I missed and it's good the get caught up. I sure was hoping that 2020 would be a better year for all of us - and then the world went crazy and here we are stuck at home again!
I also was struck by how similar we all are - in life stages, treatment issues, weird crazy itches. Did any of you ever think that "good news about your uterus" is something you would say? This disease really does strip you down to your most authentic self doesn't it? I'm sure grateful for you guys and hope that when this COVID stuff is over - we can find a weekend in Vegas or something to meet in person.
So - I've been doing radiation since the beginning of April - my last treatment is on Monday. The skin in my armpit is what is taking the brunt of the torture. I have never seen skin so dark! But I guess I am lucky because it is just now starting to fall apart a little bit and with the numbness left over from surgery - I don't really feel it much. It's just like what you all were saying - like this subliminal pain that you can't pinpoint but you know is there. I have just been using organic aloe (Seven Minerals from Amazon) and vaseline both of which seem to be really soothing. If I could feel it better I guess I would know
My hair is trying to grow back but the top is coming in so much slower than the sides. I know I'm going to break down and get the clippers out. It looks like a weird little puff ball. I do have to say that I never would have cut my hair boy-short but it sure is nice and easy. I might just keep it this way for a while. So I have a high school senior AND an 8th grader - both of them are missing out on stuff. My son (senior) missed his track season which he was counting on for more looks from colleges. He is a really good javelin thrower and was on pace to beat the school record and go to state. No prom, no senior parties, no paper toss. All cancelled. My daughter will be missing her moving up ceremony, high school orientation, and 8th grade dance. I had a real pity party not too long ago - this upended life started in February of 2019 and hasn't stopped since. I was so looking forward to the things this year held for me - my son's graduation, getting back to work, going to yoga and jumba classes. Now it's all on hold. Life is on hold. I've kind of been struggling with motivation and getting back into a groove. I could be cleaning out closets and working in the yard but I talk myself out of it every time. And now that radiation is nearly over and the tamoxifen is settling down a bit (it made my joints hurt really bad at first) I find myself trying to look in the mirror and say "IT'S OVER". Time to move forward. It that really all it is? Feels like I've earned a parade but we all know life just keeps rolling along, regardless. Do any of you feel like that? That after everything - the last day of treatment feels a bit anti-climatic.
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Hi All!
Glad to read everyone's updates. Congratulations on getting the port out, Melmax, and did you ever get your heart monitor results? I hope everything is good! I almost wrote "normal" but nothing is normal, for anyone in the world right now.
I am still getting Kadcyla (until December -- ugh) but am so grateful to be well over TCHP and radiation now in the time of COVID< and really feeling for those just starting chemo now and not able to have anyone with them for those long days.
Is anyone else feeling like their nails are worse now than ever? I wonder if it is just that the nail parts most hit by chemo are now growing out so the ends are just shredding all the time?
I have already needed to buzz my hair multiple times -- what a time for it to be growing back when we can't get it professionally cut! I took advantage of how short it is and how fast it is growing to do something I have always wanted to do -- dye it a crazy color! Currently bright blue, but also have purple and maroon dyes ready to go when this grows out
I hope everyone stays well!
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deanders Congratulations on your last radiation treatment today! 🎉🤗🎉
Yeslamadragon my fingernails are still messed up. My last chemo was in November and I’ve clipped my nails four times since then. They are still growing back discolored.
A few updates: I’m getting the heart monitor today. Switched from Anastrozole to Letrozole. Still have neuropathy and hand stiffness. Still moving slow. My hair refuses to cooperate. I keep wearing head scarves because it can’t be tamed. It sticks out on the sides around my ears....Think “grandpa from The Munsters”! What a mess! LOL
Not going to sugar coat it.Treatments have caused a lot of health problems and it seems to never end. If treatment stopped after radiation I think I could get myself back in shape. The pills are making certain conditions worse and there’s nothing to do about it. I refuse to take more medications for side effects only to deal with more side effects from those medications too. It’s a vicious cycle. Feels like I’ve aged at least 10 years but I’m hanging in there. Drinking lots of water, exercising as much as possible, and working to get my diet under control. Hugs to all 🤗💕😊
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How is everyone?
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knock on wood the weather may have taken a turn toward summer here, which would be very nice because our office is closed until 6/1 so I am telling myself this is like a little summer vacation for me. I'm just finishing up taking an online mystery writing class and I'm trying to spend less time reading social media and instead read books. :-) My husband is working remotely and he is putting in more work hours than ever- too bad he doesn't get paid overtime. The kids are finishing up elearning for their semesters. Last night would have been the end of the year Band Concert and next week would have been my middles HS graduation. A bummer but what can you do , as we know life is weird and shit happens and things can really change overnight.
Unless things change again I'll be able to get my port removed on 6/25. I'll take that day as it will be fitting--that day is 1 year after my BMX. Knock on wood I feel good. I'm on my third month of Letrozole and what I found works best for me is to take it after dinner. I don't know if it will help anyone but I have found that daily outside exercise and following a 16:8 intermittent fast schedule works well for me mentally and physically. HTH!
Stay healthy everyone1
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Hope y'all are having a great week! It's been kinda rough for me. I've done so good, feeling great, like my normal self and then poof my hands start swelling and the burning pain as if I have stuck my hands in a grease fire. So I figure it's neuropathy. Finally couldn't take it anymore and went to dr yesterday. She increased dosage on gabapentin and said it could possible be lymphedema. I'm so frustrated right now. Not to mention tired because I'm hurting so bad I can't sleep. My right hand is worse than my left. But swelling is about the same in both. I'm waiting on a apt with a lymphedema specialist to see what they think. If you have any input I would love to hear it!
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jjpope1 no advice but I’m sorry you are in pain. It seems like it’s a grieving process regarding how my body functions pre-surgery/pre treatmen
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Hi ladies!
It’s been forever since I’ve been on the lists. I’m glad to hear you are all hanging in there despite going through the full range of post-traumatic experiences. So sorry for those of you with graduates this year. It really sucks for those kids to miss out on that life milestone. 😞 I hope those of you suffering from depression and anxiety are getting the tx you need, be that medication, therapy, exercise or any combination thereof!! My apologies that this post is so long, as I’m trying to summarize five months of treatment...
I just had my first “survivorship” mammogram and ultrasound today, both of which turned up negative. Yay! I was rather nervous about undergoing these, though, but it looks like wasted emotion. They were rather simple to do and apparently easy to read, even though I still have dense breasts.
I am still receiving Herceptin. I missed two doses during the pandemic, so they’ve extended my treatment until the end of August. I restarted treatment last week with trastuzamab hylecta, three intramuscular injections. Very little in the way of side effects except sore hip muscles (where I got the injections), much like getting a tetanus injection, diarrhea and week long migraines, but that was common to the Herceptin IV before, so nothing new. I hope I go back to that next tx.
I still have neuropathy from the Taxol treatments, so I’m on neurontin. That’s probably going to be a long-term thing to put up with. I had my port removed in early March, and despite a medical record that indicated I’m allergic to chlorhexadine, betadine and absorbable sutures, all three were used during that surgery and it took six weeks for the rash on the right side of my chest to go away. The incision line is still incompletely healed and occasionally breaks open and bleeds.
My mastectomy/reconstructed breast doesn’t look too bad, but much like around the port, the incision line is still pretty ugly looking. I have phantom itching and pain in the middle of the reconstructed breast, as well as a lack of feeling. Everywhere else around the reconstruction is painful and hypersensitive, particularly across my belly (that scar looks just plain ugly!) I think I’m going to have to have some more tissue transplanted from my hips. One, to clean up where the DIEPP sx was done and two to take fat for some left breast repairs. That breast has various flat spots and is noticeably lower than the right. I also managed to gain back ALL 15lbs I lost to chemo, which makes me bummed as I could get into my college-era clothes and sizes. I was actually looking forward to the thought of shopping - no more, though! My hair is still only a half inch long, since I buzzed it at the beginning of April as it was going to be a couple of months before the salon opened.
We lost our two dogs to cancer last year, one right before Christmas. 😢 But we do have a one-year-old (+2 months) that helps to keep me going outside for walks, and entertains us. The cats are also good blood pressure reducers!! I don’t use Facebook, so I’m sorry I’ve missed responding to all of your news, but hope that if anyone needs another ear, please reach out to me. I’m keeping you all in my thoughts and my heart.
Take care everyone,
Diane😚🥰🤗
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dvhmouse great to hear from you!! You've been busy. I just had my second reconstruction surgery yesterday. I'm alive 🙌🏼🙌🏼😂😂 didn't go as planned. I was hoping to be home around 2 but didn't get home till around 7:30. They delayed my surgery for about 1.5 then had to keep me in recovery longer to get pain under control. I'm doing good today, really sore but nothing I can't handle. Was able to look at it this am and looks great. I can honestly say I'm 100000 percent happy with my DIEP choice. My PS IS AMAZING! And yes the itching and can't get to it 😳😳 it's the worst. Try Scar away strips to go around your incision areas. I will post a pic from amazon and the size I use. My PS told me to get it and out around my incision areas to get it to heal better. The size I got they are longer and we cut in half to make more. May wanna try that. I'm sooo sorry to hear about your dogs 😢
Forgot yesterday waiting for surgery the nurse and I were talking about my neuropathy and she said to try lyrica, it’s a newer form of gabapentin. They raised my gabapentin to 600 mg’s 2x’s day. Still swelling and hurting. Went to lympedema specialist weds and she said it was def neuropathy from chemo. So I’m gonna call and see what they say about the Lyrica vs gabapentin.0 -
Here are the strips I was talking about.
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dvhmouse, ditto on the weight gain. Losing 15 pounds was the only upside to chemo but being quarantined has resulted in all fifteen back on. Now I have to be careful not to put more on
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Hi all, Happy Weekend. Dvhmouse wooo hooo congrats on a boring old mammogram and ultrasound. Wonderful news! Hope your chest feels better soon.
I am going back to work 3x a week in June.- that's COVID related not BC related (my office has been closed) I ordered some cute face coverings - I take public transportation and work in a high rise so I'll be keep my face covered- don't need to breathe germs! I have a routine CT scan on Tuesday- I decided not to do reconstruction so no mammos anymore. I am working on my scanxiety. Wish there was a way to get the test done w/o knowing the test was being done. Then I wouldn't worry. Logically I don't have a reason to worry, but my anxiety doesn't care about logic!
My senior has been doing well with the lack of pomp and circumstance but my almost 16 year old daughter is so annoyed by the disruption to her active school and social calendar. This too shall pass, right?
Virtual hugs everyone!
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Hi Everyone!
jjpope: I am sorry about your pain, but so glad your surgery went so well (even if it was a long day!)
DVMouse: CONGRATULATIONS on the mammogram! Did it hurt? I have mine in July and my boob is so sore I am really worried about getting it squeezed.
Speaking of squeezing: my infusions(Kadcyla) have been moved to radiology (COVID-related, trying to get more space for chemo patients) and my last one I had my chair set up right next to the boob-flattener!
Good thing it wasn't last summer, at this point I could find the humor in it!RubyDream: I actually gained weight on chemo (TCHP, and I was warned I would) Lost most of it during radiation as for the last few weeks it was really hard to swallow, but now with more working from home I have been too close to the kitchen and it is creeping up again.
WhatAYear: The weather here is also making an abrupt turn to summer -- supposed to be low 90s 2 days this coming week. We may get one or two 90+ degree days in a normal summer, in August! I have never been very heat tolerant, but chemo alone put me into menopause-overdrive and now I just started anastrazole last week, so this is rough! I am sorry your kids are missing out on the end-of-year stuff, and that your husband doesn't get overtime
I hope everyone stays well. My next Kadcyla is this week. Trying to get outside as much as possible, but I think I will need to get up super-early (usually get up at 5 on work days) and walk in the morning as it will be too hot in the evenings. But then I may show up at work smelling of Eau de Deet! lol
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