TRIPLE POSITIVE GROUP
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SpecialK, I take 100 mg of B6 twice daily, biotin twice daily, and one B12 Complex. So I'll try 30g of L-Glutamine too! Thank you for the tip!
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tid2017, I also only had mild neuropathy in my fingertips by the end of the twelve weeks of Taxol. It didn't affect my ability to button any shirts (sorry Elaine!) but they were more sensitive. It took a few months for it to go away completely after fnishing treatment.
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tld, glad you did it!!! Happy it went as well as could be
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tld - you can find the powdered L-Glutamine at GNC and health food stores, or order from Amazon. Just don't mix it with food like applesauce or pudding - trust me on this...lol! I had neuropathy in my fingers, bottoms of feet and tongue that resolved after each infusion, until just after the half way point after #4 after which it didn't resolve between infusions, but was completely gone in all locations by about 90 days PFC.
Has anyone heard from Cherry?
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Dear triple positive guardian angels,
Today I had my last chemo.
Repeat: today I had my last chemo.
Yay!
My last chemo was my fourth every-three-weeks infusion of taxotere + herceptin + perjeta. And this came after two months of AC. Since I feel I had too much poison in me today to get a couple pints to celebrate, I went swimming in the evening instead.
More about swimming below, but first things firts: your support during this journey means a lot to me, even if I don't know you girls. You gave me courage when I needed it the most, and you showed me the way (at the beginning you didnt know it, because I was just lurking around), and you explained to me exactly how to go through this when I finally started posting. Heartfelt thanks!!!!! I will need your guidance too for the next steps and I will sure reach out.
tld: yay! you made it! what did I say? you can do this! you can do this and it will be over before you know it. I didn't ice fingertips and feet to ward off neuropathy, based on advice from my MO, who told me the neurological damage that screws your fingertips happens in nerves that are higher up in your arms so there is no point. However putting your fingertips on ice means the chemo wont make it to your fingernails which makes sense to prevent your fingernails from falling. It sounded like a good idea and I should have done that and had been planning on doing it but then since I only had taxotere every three weeks for four sessions I was unable to organize myself to do it with one excuse or another. But there is a fountain with cold water in the chemo infusion room and I dipped my fingernails in glasses of cold water during the taxotere infusions. My fingernails didn't fall off but they hurt and look awful -thank God for manicurists. I get a manicure every 10 days or so and I read something while they do it, trying not to look and finally I get out of there with short painted beautiful nails. I am very careful not to do stuff with my nails -you get good at it. I have tingling in my fingertips but nothing in my feet or toes. Elaine you cracked me up with the buttoning of shirts...for this I reach out for help to my hubby or kids, it is a total impossibility. Also plastic food containers with prepackaged salads or chopped fruit and the like are impossible for me to open -my colleagues at work are happy to do this for me cause there is absolutely no way for me to do it.
I would like to address swimming with the port, since it has been mentioned a couple of times. I swim Masters and I kept swimming during chemotherapy -less frequently, and waaaay less intensity. I refrained from swimming the week after they installed my port, because I was sore and freaked out about it, and also didn't swim the week that I spent at the hospital with a fever. The port never interfered with my swimming, regardless of stroke: backstroke, free style, breaststroke, butterfly or any drills, never felt or thought about my port while in the water. Both my MO and the surgeon (who installed my port) were adamant that I could absolutely swim with the port, even right out of the infusion room. They were both very encouraging about this. Talk to your doctors about it for peace of mind if you are concerned about it.
I also didn't do the cold caps because when I heard about them it was too late. I was embarrassed and depressed about having no hair for a while, but also relieved of not having to untangle, blow dry, style and dye my hair during this time. Anyway, after a few months I am comfortable without hair and I didn't buy a wig -but my hair fell in November, so this happened in winter and I wore colourful wool hats, maybe I would have felt different had this happened in the summer. I think when the hair comes back -it has started to come back- I will wear a pixie for a while. Cant even think of having longish hair. I may go gray too -tired of coloring.
Love to all and sorry for the loooong post. Happy Friday to all -its almost midnight.
LaughingGull
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hap - here is some info on supplement regulation and/or inspection:
I take a large amount of Vitamin D, but I use a prescription form of 50,000iu once a week prescribed by my oncologist. It should be taken with a fat containing food to maximize the effectiveness.
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Hi everybody. Thank you for the words of encouragement on my dealing with an infection. The cultures have finally started to come back and there is a plan being formulated. I am trying to keep my head above water and my emotions in check. The good news is that we can start with oral antibiotics, rather than IV. Fingers crossed.
LaughingGull, congratulations and good for you. I read your post and your bubbly positive attitude cheered me on. Keep on posting. Dare I say, you've got this!
Poseygirl, I am starting my second month of nerlynx. So far, it's been rather doable. Thanks for the info about Blackwell.
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SpecialK
I wrote Cherry via email.
I am in a travel status today. When I hear from her and get back to an Internet connection, I will post.
Vicky
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laughingGull, such good news. I anxiously wait to TCHthis Wednesday. You’ve inspired me to go for a swim. Thanks
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I got an out of officereply from Cherry.
Vicky
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LaughingGull -- Congrats on completing chemo! I didn't cold-cap either; I heard that it didn't work particularly well for AC chemo (which I had). I love swimming, too. It is getting warmer here; I am looking forward to swimming outdoors with my son. I just bought a new bathing suit!
Suburbs -- Glad to know that your infection is becoming more manageable! Better to take a pill than to do infusions.
For those taking/considering Aromasin -- I have found the generic brand produced by Alvogen to be the most tolerable. It produces fewer hot flashes/night sweats. My drug store recently refilled my prescription with a different brand, and I'm back to sleeping in a T-shirt and panties with the ceiling fan on, full-tilt. So, I'm with Special K on this one; I do think generic brand makes a difference, and that it is possible to identify generics that are more tolerable.
My colonscopy went fine. They found two tiny polyps; I will call the office next Wednesday to find out the results of the biopsy. One minor problem: due to my crapfest, we're low on toilet paper. Must go to Wal-Mart today.
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SpecialK, I am here! I have replied to coachvicky and to Suburbs, thank you for reaching out, I really needed a bump even though I told to myself every evening that tomorrow I am going to TP-thread and still..
I was touched, thank you. One of the ladies in our support FB group told me that she does not go to BCO anymore because, you know as Posey says, cancer radio playing in one’s head ... And I understood completely, I told her, but my)))) my ladies on TP-thread were there for me when I was at my lowest, I owe it to them big time, so I am not leaving BCO.
I have been procrastinating, there is no other way to put it( And I just got fed up at some point because I got this wound in my, initially after rads sore, armpit, and it has been going on for two weeks now without much improvement( First week, especially in the beginning it was really painful, I could not move my arm, just came to the realisation that whatever we do and however we move the armpit is always rubbing against the body and when you have a wound there this friction is no good at all, unless you lay still. And that was what I did for probably a week watching The Americans and Downton Abbey. And also tired, so tired I have not been since chemo, it was different type of tired too, almost like a hybernation, I could not properly sleep and when I decided to watch a movie I could not keep my eyes opened. I only dragged myself from bed for going to the rads department for bandage change, I have been going there since Feb 5th! then to cook and to run on my eclipse, most of the time I was out of function. Work is suffering immensely but I managed to pull it off at least two times a week too but that was it. I have not been out much at all but I run my three kilometers yesterday even though my plantar fascitis is still killing me.
I red all the posts today.
tld, your first Taxol was mine exactly, every word was as if I would have written it. I have been told here that nothing can prevent neuropathy but as SpecialK said icing may save your nails.
Today is the first day I am supposed to change my bandage on my own, last time I saw my armpit I asked the nurse why among all other metiers)) did she choose this profession. It looked like an vulcano eraption site( Very strange that nipple and the armpit did not hold, the rest of the breast did very well.
Ok, sorry for the rant, again( but if I am to pour it out somewhere this is the most suitable place. Hugs! My most devoted companion was my cat, the only being in my household that stands by me no matter what)) That is how we spent most of he time, here comes the pic. Hugs, Cherry
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Hap, I saw the picture of your black furry beauty when you posted it, she is just so cosy, I wish I could hug her)) Here is one picture for you))
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Cherry
You have come so far. You will overcome this too.
Love. Vicky
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hey Cherry,
I was just thinking this week I need to message you and am so glad to see you here...
Sorry you're struggling with healing, but I'm so amazed you are running every day!!!
If I fall off the boards for a length of time, I hope someone will check on me too; I think it's a very lovely thing to know you are all there. I may not post every day, but I check in every other day for sure. I just can't speak to some topics with any great knowledge (neuropathy, cold caps, American insurance, dosing schedules of treatments, reconstruction, etc).
Which reminds me - way to go, Vicky. You did it all and look at you!!! That's wonderful.
I meant to share something I read a few weeks ago; I will try to find the article. I didn't mention it because it's about spread and I hate thinking about it. But it was very interesting as it is about learning how bc behaves. A very recent research effort set out to trace the pathway of cancer cells. Their work suggests that the cancer does not actually spread via the axilla nodes to other parts of the body. However, the more nodes involved suggests that the cancer has been there longer, and that is the indirect tie to level of advancement. I will try and find this study for you. Again, not cheey material, but interesting in that I appreciate the magnitude of active research on so many fronts - immune system, biological profiling and precision medicine, sophisticated modes of delivery of new treatments, etc.
In the 1960's, man went to the moon in these huge rocket ships. And now, space machines the size of pop bottles are being developed to land on the moon. And this is because technology has evolved exponentially. I believe technology will become a vital part of cancer treatment. So that's why I read these articles
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here is the article:
https://www.sciencedaily.com/releases/2018/02/180227094640.htm
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Cherry!!!!! I told you that you could do this! I was told a long time ago
You never know how strong you are until being strong is the only choice you have!!!🤔
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tld - I'm so glad to hear the first chemo went well. Worth repeating: you can do this! We'll be here to cheer you on along the way.
Laughinggul - congrats on your last chemo, yay! You are an inspiration to us as well, everyone here is so supportive.
Ingerp- congrats on the great pathology, that is awesome news. Enjoy your visit with your kids and your down time before treatment begins!
Suburbs - glad to hear you have a plan to treat that infection. I really hope this does the trick, it's been too long!
Elaine - you're a hoot. I always appreciate your positivity and upbeat messages
Cherry - I am sad to hear about the issues you are having with radiation and the terrible pain you are in. This too shall pass, you are much stronger than you give yourself credit for. Running with plantar fasciitis? That takes determination! You have endured and come so far since you started. You are an inspiration to us all. Feel better soon, hugs 😊
I went back to work this week and gave my notice that I'm retiring. 4 major surgeries in 9 months and a long recovery on this shoulder repair has put me over the edge. I decided to focus on getting myself completely healed and as healthy as possible. My current job was too physically demanding, lots of hours and stress. There comes a time in life when we must put ourselves first and cancer definitely teaches you how to prioritize.
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Hi group and all new members, It has been a long time since I posted. Still alive...:) I have read up on the posts and thought I would throw out a question regarding spa/rehab facilities in the States (Arizona, California). I live in Sweden but was very disappointed with the rehab I was offered here, it was lika another hospital and the last thing I wanted to confront after all the treatments. I do however realise I need professional help with exercise, lifestyle changes, food etc and would love to go to a facility that provides this kind of aftercare for cancer patients. I have been looking up some places in India since they are cheaper (ariyuweda ) but feel confused.
I started working full time on a new job right after treatment and it simply became too much to handle so I recently quite realising it was way to early and feeling life is to short to work too much. It seems my "chemobrain" came back..:)
Anyway, I am up for another check up with the doctors beginning April due to a strange ace in my wrist on the side of the cancer and if things are ok I am planning to take a month off to go to some facility that helps me get back to hopefully something like my former me.
Any advice would be highly appreciated.
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Reading all the posts regarding treatment and its aftermath I think it is a good thing that patients are not too aware as they embark on this journey off the longterm effects from treatment. I would not have done anything differently but knowing I have to check my heart for many years, get infusions every 6 months etc at the start would have scared me even more during the initial stage. I think you have to take one thing at the time with this illness. One thing is certain, it will change your perspective for good but there is always good in the bad as well. The fact this might come back at any time is something we all have to live with until science finds a solution, that is just an unfortunate fact for us all. Nobody knows for sure.
The treatment offered today are at least keeping most of us alive in my opinion so that is good. I know of some that has refused traditional treatment and they are no longer here so I would be careful recommending alternative routes to newcomers easily. There are so much information and so many different viewpoints on something that are not curable you simply have to be aware of the people that went before you that has undergone all the trials to get us to the point we are today. Hopefully in 10 years we have more treatments that work better than the ones we have today due to the trials going on now but until then we are all relying on were we are today. Yes, the politics around big pharma is at play, everyone wants to cash in on sick people, but that is more a question for governments, political systems and of course voters. Think of those living in countries were herceptin is not even available today. They simply die. We have recently even in a rich country like Sweden discovered that "poor" regions within our country are not as equipped and people pass due to waiting lines for operations and care. Who is going to pay for the expensive medications? Treatment is very expensive and new medication is even more expensive until they become generic due to grants for research and other factors. Skipping the political factors we are in the end relying on our doctors in the country we are assigned if we are not millionaires so acceptance becomes important as we continue our lives regardless from were we are. One day at the time is my new motto for who is better than another, who deserves better care than another? This problem is so much bigger than my daily life so I am grateful for still being alive every morning I wake up.
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morning ladies! Cherry and Kattis good to see u!
Just wondering if anyone here has ever had a copper IUD? I asked on the other threads that were for this type of thing and got no responses. My OB/GYN says it's my only option other than condoms. I am super duper premenopausal according to my tests. (I haven't had a period in three years so don't ask me how that's possible) I asked for a tubal ligation but he said he won't do it because it's too invasive. Sigh...I'm afraid of the whole iud...sorry in advance for such a personal topic...
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Hi everybody. More thanks for your support. It really helps.
Just wanted to say congratulations to deni1661. The decision to retire is a difficult one. Hopefully, some down time will accelerate your healing process and give that shoulder what it needs.
Cherry-sw and Kattis, glad to see you back and sending healing thoughts
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tresjoli2, i have a copper IUD, so far everything is good. Was a little uncomfortable when they inserted it but after that it was ok.
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Tresjoli. Why not an old fashioned diaphragm? Worked for me back in the 70s-80s. Because of DES exposure before I was born my doctors wanted me to steer away from hormonal birth control. But those were the days when the iud wasn’t as widely known to many of us
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good for you, Deni...it’s a hard decision, but I believe it will be very empowering for you. You have to be number one!!
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hap - not an editorial comment on the content of the retreat, but this resort is about 10 miles from my house and this area in July is miserable. Very hot - in the 90’s, often with 100% humidity in the form of rain and thunderstorms. Unless this is all indoors - and it doesn’t look like it is - I would seriously consider whether it is a good location choice. I would hate to see anyone pay for something like this and regret it because it’s July in Florida
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hap - I looked at the agenda and there are definitely outdoor activities, that is why I posted the weather warning. I also choked on the cost since the rooms at that time of year booked directly are about $130 per night. I realize there are other aspects of the program, but that’s a steep price tag for some salads, nutritional lectures, and exercise classes. I have participated in a couple of free programs for cancer patients Livestrong through the YMCA, one last year through Florida Hospital called Vitality, and both included a free 12 week gym membership with complete access to all group classes, and personal trainers. We had a once a week meeting with visiting experts - nutrition, yoga and sleep, physical therapy, etc., I have also had a consult with the nutrition folks at Moffitt which was covered by insurance. It might be worthwhile to check local resources for something similar
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Hap
Going to Florida in July would be like me booking a relaxing weekend in Boston during a nor'easter.
I did the 12 week free YMCA program too. I enjoyed it but not enough to pay $55 a month afterwards.
Vicky
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coach - I found the Vitality program to be more valuable than Livestrong because of the addition of the visiting respective experts, and state of the art Wellness Center, which was new and hospital based. The trainer who initiated the program had been my Livestrong intake trainer at the Y and she had moved over to this facility right after it was built. She took the best from Livestrong and expanded it into a more encompassing program with really good takeaways. I agree that I didn’t feel like paying to stay at the Y, but I do at this place - it is spa-like and new, has fee for service massage, a coffee/smoothie bar, etc
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Kattis,
Good to hear from you! I'm sorry that your job didn't work out. I enjoy working, but that's just me.
deni,
Congrats on your retirement! Sounds like you made the best decision for you.
It's almost the end of Spring Break; the kids go back to school on Monday. But, they might not be back to school for very long. The teachers in OK will probably go on strike on April 2. Looks like DH and I will be working at home quite a bit. (There aren't really daycare options for special needs kids.)
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