Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
I will have Taxol -4 dose sense unless I do not react well and then they might consider weekly.I am a little concerned
Because some people say the 3rd and 4th AC is worse
I am hoping this is not the case.Hope you have a nice
Weekend.
Rhonda
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Hi Sylvia,
I am just popping in to say hi. i will try to look for that book you told Pam about.
I cleared with my MO about my chemo regimen and she said it would be 3 FEC sessions and 3 taxane, most probably docetaxel. i feel relieved knowing it wouldnt be all FEC. i've seen the treatments the ladies here have had and almost all are combo drugs, 3rd generation. i am glad mine is similar. i am just a little worried about my weak heart although my MO says everything would be fine.
i am gonna start shopping for my cancer kit, wigs and all. i would also try to find the avocado oil shampoo you told me about. i am having a thought about buying Vit D3 and glaucosamine chondroitin, cause it might interfere with my chemo treatment. i guess i may have to postpone it and clear with my MO first.
Have you tried the turmeric already? About the local green veggies i told you about, you can find it on a separate thread i made "Just sharing what i think are healthy food for cancer patients". it is not much, but you might still be interested.
ok, this is all for now.
Regards to Mary wherever she may be right now. i hope she is having a nice time.
hello to everyone, happy halloween in advance!
gmmiph
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hi Sylvia
Got through my first paxitaxol or on Friday with no problems but very sore and achey today! Have slight pins and needles in my right foot but bearable. Does this also make u feel a little hot in the face because that started today as well but overall coping physically and working on get my head in the right space! That's the hardest part.
Cheers
Kat
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Hello Kath,
I was glad to know that you had got through your first treatment of paclitaxel (Taxol) today.
You are going to get through this,
Do not worry about the flushing of the face. The drugs do make this happen. This started to happen to me as I went through treatment with chemotherapy drugs. Often it was just on one side of my face.
If you think having the drug every three weeks is going to be too difficult for you, then just ask to have it weekly.
I hope you are managing to have a relaxing Sunday.
Fond thoughts.
Sylvia xxxx
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Hello gmmiph,
I do hope you will be able to find the book I mentioned to Pam, as I think it is a useful one to guide you through treatment. Karol Sikora is a very well known oncologist.
I was interested to know that your chemotherapy treatment will be three FEC sessions and then three taxanes, probably docetaxel (Taxotere). I had four sessions of EC and then four sessions of T (Taxotere = docetaxel).
I started to lose my hair after my first session of EC and I had the flushing of the face that I mentioned to Kath. It did not bother me. My only side effect during the EC was tiredness, but I carried on with my life as normally as possible.
Before I started the docetaxel I asked my oncologist why she had chosen that rather than paclitaxel and she said it was not so harmful on the heart. If this is true, this might be why your oncologist has chosen docetaxel. I had never been ill in my life and looked really healthy and the oncologist said she was going to have to poison my body in order to get me better again. At the time, in the UK, docetaxel seemed to be used more than paclitaxel. I had an ECG before beginning chemotherapy to ascertain that my heart was fine, and I had one after treatment which showed no harm to my heart.
I am sure your oncologist will know what she is doing.
I do hope you find a nice wig that you can wear with confidence. I had a lovely wig which really suited me. I still have it because I take nothing for granted. The brand was Raquel Welch.
As for the avocado, it was not shampoo. It was the pure avocado oil that is used for salads and cooking. With no hair your scalp can get very dry and form little dry crusts. Every morning when I had a shower, I rubbed some in and then washed with a little shampoo. At the time I was recommended baby shampoo. If I had to do it today I would use the Dr Organics shampoo and separate conditioner that I have used for sometime now.
I do not know much about glaucosamine chondroitin, but I cannot see how vitamin D3 can interfere with your treatment. We each have to make up our own mind, but since there seems to be a connection between low vitamin D levels and breast cancer, it seems to make sense to take it.
If I were you I would try to get a DEXA scan which is a bone density scan. This scan will show you the state of your bones before chemotherapy and I would get another one at the end of treatment to see if your bones have been affected. Chemotherapy and radiotherapy can affect the bones. This scan is not harmful. Please do not mix it up with a bone nuclide scan which is highly radioactive and which is used when needed to see whether cancer has spread to the bones.
As I said, we all have to make up our minds about what we do to help ourselves during chemotherapy and radiotherapy treatment. I continued to eat all the things I thought would be good for me and I took vitamins and minerals.
Yes, I have tried turmeric. I put turmeric powder into soups during chemotherapy. From time to time over the years I have put turmeric powder along with black pepper (piperine) into organic hummous and put it on my food. Some months ago I discovered fresh turmeric in one of the shops in Exmouth and I tried it. I washed it, cut it up and cooked it with vegetables. This weekend I saw the fresh turmeric in one of my natural food stores and so I bought some and cooked it again with vegetables. I figure the fresh turmeric must be best.
I shall have a look at the thread you have started about healthy food for cancer patients, according to you.
I hope you are having a good Sunday.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
Thank you for your post and for letting us know that you are going to have four session of paclitaxel (Taxol).
I do hope that everything will go well but, if you feel that regime is too difficult for you, do not be afraid to ask for weekly.
Do not worry about what other people say they experienced during their chemotherapy treatment. We are all different and we all react differently.
What I was told by the medics was that the chemotherapy treatment builds up as you go through the different sessions. This makes sense because each session of chemotherapy undermines your immune system and you are weakened by the drugs in your body. You may feel more tired, so you need to rest more. Remember to keep hydrated and remember also to keep telling yourself that there is an end to the journey and that you will get back to a normal routine.
I hope you have had a good relaxing Sunday.
Today the weather here in Exmouth has been more like spring than autumn, but the leaves are falling fast and the grey squirrels are busy gathering acorns.
Take care. Fond thoughts.
Sylvia xxxx
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hi Sylvia
I am having the paxitaxol
Weekly and think it will be easier to tolerate that way. Next dose Friday
Cheers Kat
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Sending healing thoughts to you Kat as you go through this. Hello to all. trying to put one foot in front of the other. a day at a time. Most importantly, I find when I'm active mentally or physically, I am positive.
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Hi Sylvia and all,
Funny, i thought you were referring to an avocado shampoo coz we have lots of shampoo here with aloe, lemon, papaya, etc. I was actually looking for it yesterday at a department store and all the salesladies i asked gave me a quizzical look. My, my. And i am not on chemo yet. avocado used to be one of my childhood faves, i either eat it fresh or make it into milkshakes. They used to be abundant here, along with watermelon, cantaloupe, and guyabano, but now, they are scarce. the only all-season fruits we have now are bananas and coconuts. During summer there's lots of mangoes and mangoosteen (which is also believed to be anti cancer).
I cant find that book you told me about in a bookstore i went. iscador, nope, fresh berries, nope, raw walnuts, yes, almonds roasted, yes.
i usually put freshly-grated turmeric with fresh coconut milk to a combination of half-cooked veggies such as squash, eggplants, okra (lady finger), saluyot (jute), string beans with lots of pepper and ginger, together with some bits of lightly fried fish. it's delicious. and it now made me hungry.
btw, did you use any anti-nausea meds before a chemo session? i am worried that i might get nauseous after the chemo session and i think i should take something in advance before nausea sets in. My MO said there is no need for anti nausea drugs. I wonder why she is so confident. I am not. it is only 3 days from now til chemo and the pressure is building up.
ok talk to you next time.
Happy Halloween.
gmmiph
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thanks Valstim,
Just sooo scared
About this shoulder! I should not be doing this given good diagnosis but very frightened! This is such a long journe
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had a look at an ultrasound I had on my shoulder in march this year today after a nasty shoulder dislocation 3 years ago an I noted that I have a large supra spinatus tear in the posterior aspect of my rotator cuff so hopefully that is where my pain is coming from particularly with the taxol. Made me feel better still have good movement just aches with the taxol and a
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Hello Kath,
We shall be thinking of you next Friday when you have your next dose of paclitaxel. I am sure you are going to be fine with a weekly dose. You just need to turn up relaxed, make yourself comfortable, let the nurse fix up the drips, and the drugs will be fed into you. Tell yourself all will go smoothly and remember to drink plenty of water afterwards.
Wishing you good luck.
Sylvia xxxx
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Hello gmmiph,
Just keep your scalp moisturised with a good gentle shampoo and conditioner.
I think you should be able to find the book in paperback online. I do not know if it is in the bookstores.
I was puzzled about your trying to buy Iscador. Iscador, which comes from the mistletoe plant, is only available through qualified doctors, homoeopathic and alternative, in this country. It is administered orally or through injections.
From what you have said about the fruit in your country, the fresh berries are probably seasonal. The best ones here are blueberries, raspberries, and blackberries. They all grow here, but when not available they come in from other countries. I eat them all year round. At this time of year fresh cranberries come in from abroad and need to be cooked lightly.
You asked about anti-nausea medication before chemotherapy. In this country the anti-nausea medication is put into the drip with the chemotherapy drugs. After an infusion of chemotherapy drugs, you are given anti-nausea tablets to take home with you to take for just the first three days. There is no reason why you should have nausea and if it were me I would not anticipate it, as psychologically it might cause it. Trust your oncologist and her team. When I had chemotherapy I had to go to the oncology ward which was set up like a large lounge with comfortable armchairs in which to sit. I used to arrive, check in with the receptionist, a nurse would come along, settle me in an armchair, wait for the drugs to arrive from the hospital pharmacy and then set up the drips, connect me to them through a cannula inserted in the back of my hand, and then I would just sit and relax as the drugs were slowly fed into me. There was absolutely no pain in this procedure. When this was over you would wait a while to make sure you were alright and then be given the medication to take home and that was it until the next time.
I had a dedicated breast care nurse to phone in case of problems, as well as the number of the oncology ward to phone if needed.
I hope this helps and wish you luck for Thursday.
We have you and Kath having chemotherapy one day after the other.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
We have a store shop inside a mall that usually sells imported vitamins and homeopathic supplements and i thought they may have iscador. i did research a little bit about it and found out it came from mistletoe plant but didnt know it is sold only by qualified homeophatic and alernative doctors. Anyway i did it only out of curiosity. there is one popular naturopathist and cancer nutritionist here who sells many alternative meds but i dont dare buy them coz i really dont know how effective they are. but i do follow most of his advice on natural food diet.
Btw, my former officemate who got healed from her tumor paid me a visit today. She confirmed that all her lab tests were negative from cancer. the last time i saw her, she was so thin due to her strictly veggie and fruit diet for more than a year, but now, she is back in her normal weight again. she did confirm that she ate mostly the steamed veggies i mentioned to you before plus guyabano leaves which she made into tea and drank everyday for 40 days. she also used "duhat" (java plum) leaves for tea, the fruit of which i think is the closest i could get to your berries. other food she mentioned was mangosteen, saba banana and camote (sweet potato). she also used vitamin D supplement
About the anti-nausea med, i checked the internet on the list of meds my MO included in my FEC chemo session. There was Aloxi , which i found out to be the anti nausea med and Dexamethasone which is a steroid, for pain mgt. So, i guess my MO is very good after all, except for her penmanship ( i have to decipher every letter, before i can understand what she's trying to give me), haha. thank you for describing the chemo procedure you went thru yourself. it gives me a clearer picture of how it is going to be done. my worries are much lesser now. You are really a great help, my idol.
ok, this all for now.
Hugs For You my Mommy.
gmmiph
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HI, Kath,
Glad you are going to the weekly dose of the taxane. I did it in the larger doses and ended up with neuropathy. I think the smaller doses will make that less likely. I also have a partial tear of rotator cuff. It happened during the time I was on chemo, and it caused me a lot of pain. It still hurts if I use that arm a lot, but better than it was. Do you think you will have it repaired? I went to an orthopedic doc, he said I could have it fixed now or wait till it tore all the way, he would treat it the same way. Long recuperation, 6 weeks in a sling and then lots of therapy. Haven't gone for it yet.
Best wishes next Friday, the people I knew who did the weekly Taxol did quite well with it. You will too.
Talk soon, Mary
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Hi, Sylvia,
Looks like a busy weekend here, so many ladies going through and about to go through chemo. You are giving great advice. I have probably no more advice to add, except to try to stay as nourished and hydrated as you can. I had a difficult time with this as I lost much of my taste sensation, but it is important to try anyway. I really knew nothing before I started except what the cancer center staff told me, and that was to just eat calories. They gave me a case of the sweet syrupy Boost/Ensure, did not like that at all. There are better options out there, and you can make your own nutritional drink.
I am going to finish the report on third day of symposium, so will talk to you again soon.
Love, Mary
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To all,
Day 3 of the TTAC Symposium in Dallas TX.
After Dr. Axe spoke my sis-in-law and I took a break from the next speakers, and went in search of something warm to drink. The rooms had suddenly gotten very cold. We stood in a long line, she got a large coffee drink, and I chose a very large green tea. This warmed us back up and we returned in time to listen to Dr. Edward Group. His presentation was titled "The Secret of Health". He believes that the body must be kept very clean inside, and his regimen involves regular colon cleansing. This is done very naturally with distilled water with organic apple cider vinegar, and aloe vera juice. There is also a product called Oxy-Powder which is used during the cleanses. I looked him up online and he has a large line of products one can buy, but he did not push them during his speech. He spoke of the importance of drinking clean water. He himself drinks only distilled water, to which he adds a spoon or two of organic apple cider vinegar, raw and unfiltered. He spoke of the importance of clean inside air. Recommends the use of good quality air purifiers, he himself has a whole-house unit, I imagine this is very expensive. I personally have a small one, I notice the difference since I have begun using it again. Seems to make a difference in my allergies.
He mentioned "oil-pulling" very briefly, I had no idea what that was. It is a at-home dental treatment, and is supposed to be wonderful for your mouth and teeth. This is an Ayurvedic-inspired treatment that involves swishing a good organic oil in your mouth for 10-20 minutes. Coconut oil is recommended. I checked on WebMD, they even say it is a good practice, but recommend starting with 5 minutes and working up. Apparently the oil pulls the bacteria out of places in your mouth they may be hiding.
He was another doc who had a hard time getting everything he wanted to say into his time-frame, he was very good, I did purchase his latest book called "The Green Body Cleanse." They were selling some of the docs' books there, for half-price. Seemed like a good deal.
Next up was the couple, KC and Monica Craichy. They apparently have a TV show that I have not seen. They sat in chairs and talked, along with Mike Adams. They covered a lot of things we have been hearing about: hydration, nutrition, exercise, stress, sleep environmental hazards, meditation and prayer. Monica at one time fell into deep depression, and has come through it by changing diet, and lifestyle.
The next speaker we heard was Dr. Nuzum. We had heard him briefly before, and he again went over the importance of the supplements he has created. The fermented turmeric, the immune system booster, and the mineral supplement containing fulvic acid. Also the importance of bone broth. There was another speaker at the same time, I wish we could have heard him too in hindsight. It was Dr. Lee Cowden, he spoke on "Overcoming Advanced Cancer."
We had a short break and then listened to Erin Elizabeth speak on "The Holistic Doctor Deaths in North America and Beyond." She is a journalist and is married to Dr. Joe Mercola. She became interested in this subject when it hit close to home. She started looking into the matter of holistic doctors, seemingly young and healthy, dying mysterious deaths. She began seriously digging in and found no less than 60 such deaths since 2015! In one year that many have died, almost all have been labeled suicides, or have just been unexplainable. I found this hard to believe, but it is easily researched online. She said some of the families have begun coming forward, and she is going to start work on a documentary on this subject. It should be very interesting. Googling the title above brings up all the info so far discovered.
This brought the conference to a close for us. My brother and his son had arrived to take us out to dinner, and there was only one more speaker anyway. It was Jordan Rubin, and his presentation was titled "Planet Heal Thyself." I'm sure it was very good, it was apparently a reiteration of much we had already heard. He did empasize the importance of restoring the topsoil, which is depleted. Growing our own food, and healing both our bodies and our planet.
I have to again say that this was a wonderful experience, we enjoyed every minute of it, and listened and learned a lot. I have also enjoyed writing down the little I have here, sharing it with all of you has brought back the enjoyment and the positive energy we felt there.
Any of the doctors or the titles of their presentations can be easily found online, there is a lot more info on all of them.
Mary
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gmmiph...I had Cytoxin as part of my chemo treatment and was told that I should not experience an nausea. I believe the doctors know this from gathering the feedback from their patients. Also, you will receive anti nausea medication by IV before the actual chemo. Because I was so fearful of nausea I bought wrist bands used to control motion sickness when flying or on a boat. They are available in any pharmacy here in the US, and hopefully where you live. I wore them during the infusion and every day for the first week after. I have no way of knowing if they prevented my nausea or if I just tolerated the chemo well as my doctor said. But, I was happy to have them. Another thing that helped me was to drink fluids...a lot. Try not to worry so much. Treatment is unpleasant but needed and very doable. You will be fine, and we are here to help you every step of the way. ❤️
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Hi, gmmph, or may I call you Gummy?
I am rather stiff from sitting here so long, so am going to take a break. I am not as tough as Sylvia! Will write more later.
I forgot to say that I spent the weekend with a dear friend, we took off and went north and saw some pretty trees and landscapes, poked around in dusty antique shops and all kinds of interesting places, and generally had a good time. Came back to cool and cloudy, we are also very dry here, wish we could get a good shower of rain.
I will be thinking of you as you start on your chemo.
Talk soon, Mary
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This is me acting silly while away.Mary
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Hi everyone
This was a news item today here in Ireland, lets hope it is the break through it appears to be:
https://www.irishexaminer.com/ireland/triple-negat...
Michael
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Hi ladies,
chatterbox, that is good news. i hope they can develop and manufacture it in time to end the miseries of so many patients. thanks for the info.
Mary, my name is Gina, but I like Gummy too. GG for short. You looked great in your picture. Looks like you've been stress-free. Your smile brings joy to me. I am glad you had a nice weekend. Thank you for your tireless series on the TTAC conference. It really was very informative and i am sure many here picked up some useful info. Just mentioning the names of the speakers will give hints for others to surf the net on the speakers' websites where plenty of important info abound.
Cathytoo, thanks for your advice. With the info and personal experiences i've read from the many wonderful ladies in this forum, including you, I am definitely more equipped with the knowledge and courage to face my own journey.
Hi Sylvia.
Thank you ladies (and some gents) for your caring and sharing.
Talk to you again soon and have a nice day.
gmmiph
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thanks Mary
Just so scared they may have missed something in. My bones! I know it's not feasible given no lymph
Involvement and negative MRI and small rumour but shoulder very sore which one would expect. Need to go day by day
Cheers
Kat
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Hi Kathseward, I am as nervous as you are. I see we'll both be having chemos a day apart. This is my first time.
Lets offer each other prayers for complete healing. I will also pray for your loved ones.
We can do this.
gmmiph
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Kathseward,
Here's a beautiful prayer for all of us...
"Heavenly Father, I thank You so much for this day. Thank You for blessing us with it and in it another opportunity to serve You. Thank You for being the light in this dark world. We thank You for the enormous blessings that You send our way. Thank You for the opportunity to serve others in Your name.
We rejoice with our friends who let us know they are cancer free! Thank You for their desire to now show the world your amazing love which they have seen first hand through their battle.
I lift up all cancer patients to you. Please be with them and give them comfort and peace during this battle. They need Your care and attention. Please be with them in this journey and where it's Your will, bring about healing to their bodies. Please be with their families as well as they join their loved ones on this journey.
I pray for all of the cancer patients who are awaiting test results. Please give them comfort and strength as they await the results. I lift up all of other patients who are having procedures. I pray for Your hand over all of their care and that you will be with the doctors and health professionals whom they are working with. Also, please be with all of their families at this time.
Lord, I pray for all the people who are entering hospice now. Please wrap Your loving arms around all of them and give them comfort in knowing that you love them so much and will take care of all of them.
I also lift up all of the loved ones of our friends who have gone home to you these last few weeks. I pray for all the families who are facing the day without their loved one. Please give them comfort in knowing that they have gone home to You and that the pain and ties of this world no longer bind them. Please allow me to be a source of comfort for them in their battle.
I lift up all these people to you Lord. In your precious name I pray. Amen.
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my prayers are with u! U have an amazing attitude and will get through this
Cheers
Kat
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muscle ache and pins and needles dreadful today! Any tips on how to manage them? Everything is achin
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Hello Mary,
Thank you for your posts. You have done a really good report on the symposium There is so much information flying around that it is too much to take in. I was most interested in the organic oil and oral health.
I liked your photograph and must say that you looked very happy and relaxed.
I am so glad that you found this thread. You are a great asset.
Love, Sylvia.xxx.
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Hello Kath.
I was sorry to read that you are suffering from aches and pins and needles today. If it is rally bad you should let your oncologist know
before you have your chemotherapy on Friday. You do not want to start it feeling below par.
Thinking of you,
Sylvia.xxx
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Hello Michael,
I was happy to see you back on he thread. I shall be sure to look up your link as soon as I can.
How are you? The thread has been very busy and there are quite a few women going through chemotherapy and they are naturally anxious.
I do hope all is well with you and that you are in good health.
It is disappointing that so few Brits are posting, but they may be viewing. I did originally start the thread for them because I thought we were in the dark ages.
Best wishes,
Sylvia xxx.
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