Taxotere, Carboplatin and Herceptin
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Naiviv - great list and strategy.
I would probably go for the same reasons as Marsha. It FEELS vulnerable and scary, but probably is moreso in your own mind than in medical reality. But there are some risks, so doing Vivian's list is a great pro-active approach. Also the cauterization should continue to help reduce nosebleed problems.
However, I would not ski. I would not want to risk ANY injury. And I would not do hot tub/steam room/spa stuff - too many germs and possibility for infection. Sorry.
I would explain to the kids very specifically and in depth that you are going, but it is NOT a normal trip and you are limited. So they do not have any unrealistic expectations of you and try to push you to do everything with them. I would eat only cooked vegetables (to avoid risk of neutropenia), hand wash and use sanitizer after being in public places (like the airport), and TAKE IT EASY. I am generally not a germaphobe AT ALL, but I would be extra cautious in this sitaution. Bring a big fat book, put your feet up and rest.
And enjoy every moment, and fill us in on the details.
Oh one more thing - I was on a plane yesterday with a young woman who was going home to Quebec City. She had PERFECT English. I think that while everyone might not, there will definitely be people who can speak to you or translate if need be. You are not that far from Montreal, lots of visitors will be bi-lingual.
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Thanks so much for all your thoughts on this!
After much backing-and-forthing, my husband and I decided we would not go. Partly, this is because we are not all "ready" to go (we hadn't done the prep we'd planned to do for the trip yet and since our kids are 6 and 9, they aren't much "help" in that department) and I know I won't be feeling great this weekend because my next chemo is tomorrow. And partly because if something did happen - even something "minor" like another nose issue - that would mean going to a hospital not right in the ski village and one of us has to be there to pick up the kids from ski school, etc. Also, worried about "paying" for the trip in terms of after-effects/fatigue upon return. I've been feeling great, back at work (& very busy this week). Actually loving being at work and don't want to jeopardize that as much as possible.
So, our compromise plan is to try to do a short ski trip closer to home (in VA or western MD) so that we can drive, are more flexible generally, etc. I don't know whether I will actually ski or not, but I think why not if I am really cautious? I haven't fallen while skiing in a few years, last time I fell I knew I was pushing beyond my boundaries. I might do just a few easy runs, call it a day, and sit by the fire with a hot choc.
And, we are going to do our Canada ski trip next year
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Good compromise!
We have a timeshare in Massanutten - they have skiing there (I don't know anything about it, since I don't ski and have never been there in the winter). IF you look at it online and it looks interesting to you, I have an extra week I would love to let you use as a gift (free). Send me a private message if you are interested. They have 2 bedroom units there (with kitchen, jacuzzi, fireplace). Not super luxurious but very nice. And they have a water park right on the grounds that is pretty amazing (especially for your age kids). www.massresort.com - take a look and let me know.
Whatever you do, enjoy the time with your family.
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Oranje...of course only you can determine what you are able to do....and on any given day depending on how you are feeling. I can tell you that we did a few long weekend trips during chemo. I learned to rock climb (on a rock wall with harness) 2 months in. I bicycled during the warm months regularly. Eventually I had less energy and strength but that was after my mx (I had chemo first), rads and hysterectomy. Be smart, be careful.....but do what you enjoy, even if it's in a modified way.
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Amy what a kind offer for orange. I hope it works out.
Orange, I like how you are thinking. Have a vacation but remove the risks. I like antiquing near massanutten. They also have snow tubing which coul be fun for the kids.
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amy - what a sweetie to offer your timeshare to oranje, so generous and heartfelt!
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Amy, you are too generous! I will send you a PM.
If there is a silver lining to having this awful disease, I've experienced so many acts of kindness.
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Amy, you are a good soul! Namaste!
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I have a question regarding the weekly Herceptin.
I am finishing up CHEMO on the 23rd. And then I stay on my weekly herceptin for the rest of the year. I was planning on going to my cousins wedding beginning of February out of town and just found out my mom needs to have eye surgery the week after so I would miss a dose to stay with her that week. I had already planned on missing a dose in March and June because of family trips... Do they just add these missed doses to the end of the cycle? Any significant consequences?
Thanks
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I missed one dose and they did not add to the end of the cycle. I think the plan is for one year, rather than # of doses. But that was almost 5 years ago (yay) so maybe things have changed.
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TravlMom - I will stay on the every 3 week schedule for the Herceptin only that I followed with the TCH. You might check to see what's the difference between weekly & every three weeks. I'd be interested to hear an answer.
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I had to stop taking Herceptin for 2 months because I had reduced heart function on my MUGA scan. I thought we added those treatments to the end, which bummed me out because I planned to take a vacation in July which was a end-of-chemo gift to myself. But now I expect to have a few more doses afterwards. Definitely going to ask my MO about this when I see her Wednesday.
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Minus 2
I asked the question of weekly vs dose dense Herceptin. I am currently doing weekly while receiving TCH every 3 weeks.
Herceptin can be damaging to the heart and as it was explained to me the weekly dose is less and the chances of damages are less.
I think age and personal and family heart history may also play a factor in the decision.
It is my understanding that Herceptin is for 1 year/52 weeks or 17 DD every 3 weeks.
V
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Hey Ladies, I"m on Herceptin only now (since the end of July). Have any of you had your port removed during the "herceptin" time? I hate my port - it aches a lot - I mean, I love it every 3 weeks when it's needed, but the rest of the time it's not comfortable. I am having a revision surgery in a few weeks and I was considering asking my PS to take it out. I figure that I only have about 6 more sessions of Herceptin to go!
I have wicked bone/joint/muscle pain from this medicine and really weak nails - I can't grow a single nail on my hands. My onco swears it has no side effects!
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ukkate, i talked to my MO about removing my port because the nurses could not access it last time and it was extremely painful even with emula cream and cold spray. We ended up doing an IV in my arm. She sent me to interventional radiology where they put me under a X-ray and were able to access it, but again it was excruciatingly painful to put the needle in. We thought it might have flipped around. Well it's turned a little, but not impossible to access. They said I could come to IR to get it put in for my chemo, which is ridiculous. It's in a different hospital and would take all day to do my infusion instead of a few hours. Part of my problem is I insisted they put the port in the spot where I had a port 6 years ago and there is scar tissue.
I'm having a breast revision next week and I want it out. I emailed my MO and said I don't care if IR can access it, I will never consent to using it again. It aches all the time and is getting worse, along with my areas of necrosis.
MO said the risk was much lower for hurting your veins with herceptin. She is not replying to my emails and I see her Wednesday. She may want to advise me to leave it in just in case we need it but ii am demanding that it come out. I don't want to have an another surgery for this, and I think my plastic surgeon may do a better job with the scar.
I also recall that I demanded my surgeon take my last port out right after I finished chemo. My then 2 year old son was always hitting it with his head. The nurses said, oh no, you have to leave it in for a year...just in case you might need it (get cancer again). I was like, um, yeah, let me talk to the doctor and he agreed to remove it. Turns out I did need it again but 6 years later. I'm glad I had it removed.
Bottom line, it's your body.
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I have a question for all of you who have been finished with chemo for a while and have/had neuropathy.
I am hoping for some reassurance - I have SEVERE whole body neuropathy that involves pain in every inch of my skin from head to toe. I just saw a neurologist who told me I have small fiber neuropathy. Anyone else with this diagnosis? Anyone else with SEVERE neuropathy - I hope to hear from someone whose neuropathy progressed after chemo, became severe, and then eventually resolved. I need hope!
Here is my situation:
PFC = almost 6 months
Symptoms = I have pain involving every inch of my body from head to toe - most severe in my feet, left hand, and mouth; it started after my first chemo and has progressed, even getting worse after I was done with chemo (still on Herceptin). Wearing shoes feels like putting my feet in a vise! Driving/typing hurts my hands. Part of my mouth burns as does the skin of most of my body. I have some numbness in my hands that only gets bad when it is cold. I think I was given too much Taxotere for the amount of liver function I had (ALT was in 300s at one point during my chemo).
EMG/NC = normal
Physical Exam = Loss of ankle reflexes
Diagnosis = Small Fiber Neuropathy (Definition = a predominantly painful neuropathy involving the ends of the nerves)
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I'm sorry, Kirklandgal, your neuropathy sounds just horrible. Some of use took glutamine and B vitamins during chemo to prevent neuropathy... I'm wondering if those supplements would work after the fact to diminish existing neuropathy?
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Flaviarose - Thanks for the response. I did take both B supplements and Glutamine. A month ago they checked both my B6 and B12 levels - my B6 level was slightly above the normal range and my B12 was within the normal range but at the high end so I stopped my B supplement. I also stopped the Glutamine at the same time - I am losing hope and it is not fun to take - I had been on it for several months. I have tried Gabapentin but had no relief and ended up in a car accident so stopped it. I have recently been started on Lyrica and am slowly ramping up the dose while waiting to see if it will help.
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kirklandgal. I am so sorry to hear of your side effects. Lyrica is sometimes proscribed for fibromyalgia, which I do wonder if it could be playing a role. Does the pain seem to move around? Is it painful in places of past trauma like surgery sites and past injuries? Fibro is very real physical pain that is caused by neurological system overload. It can be triggered and exacerbated by fight or flight response and can sometimes be managed by stopping the psychological cycle that feeds it. This might not explain your problem at all but if it is part of it maybe it can help you find solutions.
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Marsha - thanks for your response. i will talk to my PS about it and the nurses at the infusion lounge this Friday when i go - I'll have them take a look at my veins.
I couldn't help but read your diagnosis - a second breast cancer 6 years after the first
Were you getting regular MRI's after your first round of BC or just one every few years? Mamograms missed my original BC and I'm scared to rely on them again moving forward.0 -
Marsha - Thanks for the response! No I don't think it's fibromyalgia - it doesn't move around. It's everywhere all of the time - touch/pressure does make it worse but it never really goes away. With the Lyrica, it's going to take some time to get my dose into the helpful range. I get to take 100mg at night which does help me sleep but my daytime dose started at 25mg and I have to gradually work my way up to an effective dosage - if I increase it too rapidly they say it can cause too much daytime sedation. Good luck with your breast revision! Sorry you are having so much trouble with your port!
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I had my port out after TCH #5 due to infection caused by my port scar opening after chemo #3....so did last chemo via arm vein. Just had to go slowly. I had the remainder of my Herceptin treatments in my arm vein. It's doable
Kirkland I am so sorry for your pain. I have residual neuropathy, but nothing like you describe. Praying for you.
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Ladies
I am getting my first TCH in the morning. Please send prayers and hugs my way. Thanks to all of you for sharing. I have my SE meds lined up at home, hopefully won't need them! My Hubby going with me. I am going to Ice my digits if I can tolerate the cold. I am sure people will look at me like I am a Loon. Oh well it will make me mentally feel better by doing it. I will report back how I am doing.
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2ndtime4me, I am praying for you tomorrow. i hope you have minimal SE or nothing at all. Just try your best to drink as much as you can. Hugs!!!
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2ndtime I pray everything went well today.
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Hi Ladies
I am home taking it easy. I was given IV aloxi for nausea and Decadron so am feeling shakey but good. The Nurses were very nice, gave me good advice about wigs and a free crocheted hat and a pair of cute earring someone donated to patients. I iced my fingers and toes so we will see if that helps neuropathy. My port is much better thank goodness, seemed like most people had one in. They said to expect muscle aches and fatigue in 2 days. We can do this......
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2ndtime - I don't recall hearing anyone saying the icing helped to prevent neuropathy. It does help to prevent the loss of nails. Be sure to take the Claritin for muscle aches especially if you're doing Neulasta. Who knows how it works but it did for many of us.
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Minus Two You our correct it is to help nails, I just hoped it would help neuropathy as a bonus. My Nurse Practitioner told me Taxotere is know for being hard on Toe nails for sure.
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2ndTime - hope you have a day or two to do nothing but veg!! Good luck with the SEs
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2ndtime - glad things went well for you. I hope your SE's are mild. There are wonderful ladies here that can help and encourage you through this!
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