Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Rhonda,
That is another dose of chemotherapy drugs behind you. You will feel fatigued but you will pick up slowly as the days go by.
I was glad to know that you are going to have weekly Taxol (paclitaxel). I keep reading that women deal with it better this way. Of course, it does mean more trips to the hospital.
I was interested to know that your oncologist wants to add carboplatin. It seems it is better to have a mixture as the various drugs deal with killing cancer cells in different ways.
I was interested in what you said about trials for acupuncture. I thought that a patient should not have acupuncture during chemotherapy treatment.
I took oral Iscador during all of my treatment, but I was told not to have it through injection because of the risk of infection.
How will acupuncture prevent neuropathy?
I know that Ayurvedic treatment for cancer is quite popular. The book The Cancer Directory that was newly published in 2005 when I started treatment, wrote a lot about it. The book covered orthodox and alternative treatment and the author, Dr Rosie Daniels, was treating patients in a hospital with Ayurvedic treatment. I remember something about carctol.
What is an Ayurvedic massage like? How do you feel afterwards?
That is all for now.
Fond thoughts.
Sylvia xxxx
0 -
Hello ChrisAsh in the UK and clauclau (Claudia) in the US.
I am concerned that we have not heard from you since you posted that you were starting your chemotherapy. I sincerely hope that you are coping well and not having too many problems.
Hello Amanda10,
I hope all is well with you and that we have not heard from you because you are too busy getting on with your life.
Fond thoughts.
Sylvia xxxx
0 -
Hi Sylvia and all,
Just checking in to greet you guys. Hope everyone's ok.
Day 3 for me after chemo, no SE yet, except for a little loss of appetite. I try to eat little but more frequent. Lots of liquids, trying out SILK organic soya today.
Sylvia, today is my last day for dexamethasone, which i know is anti nausea and a good complement for aloxi, but it is also used for rheumatic arthritis which have been bothering me for sometime. My MO says it is good for me to relieve some aches in my knees. As always, thanks for your post and concern.
Talk to you again soon,
Gina
0 -
Hi Sylvia,
I felt really relaxed after my massage.It works on clearing toxins in your body.As far as acupuncture-Sloan Kettering
Offers acupuncture at their treatment center to help prevent neuropathy. I don't know how to add a link but ic found information on acupuncture from Dr. Weil that I took a picture of.Also, a little information on Ayurvedic massage.
0 -
Hi Sylvia,
I still have trouble posting on this.
0 -
hi rhonda,
here is how you can insert a link here.
First, copy the url where your desired link is located. You can find it on top, at the command line where you also type in your own links
Next , go back to bco text editor and click on the second button on the leftmost of the second line (next to the video insert),
Paste your url link.
Then put in your desired description name below.
I hope it works for you.
Please try it.
Gina
0 -
Rhonda,
Here's a nice link for you... I did it just to make sure it works.
Here is the link ...
0 -
hi all
Has a good day today post 2nd taxol but opposite shoulder get very sore again . Makes me terrified I know I have injure that shoulder and that is probably the cause but those dark thoughts keep coming in! Heat and massage helps it go away and I still have great movement but so scared that it's something rlse
0 -
Thank you Gina,
I took a screen shot of your directions so I can follow them.It would be easier with my computer but my son
Never gives it up so I am stuck with my phone.Hope
You are feeling okay.I am a little more tired after
the 3rd AC but no other symptoms thank God!
Rhonda
0 -
Hi rhonda,
i am using a phone too. An Iphone or an android phone like Samsung would be fine.
I am feeling fine. This is day 4 after my first chemo. Today, I am off my dexamethasone, fingers crossed. The only side effect i have so far is a little loss of appetite and i feel sleepy always.
Was your third ac better than the first two? or are you coping better now? I hope we can all get thru this. My positive thought are with you.
Talk again soon,
Gina
0 -
Hi Gina,
My first AC was the worst.I do feel more tired after the 3rd.Also,my appetite is not
Good. I remember feeling like I couldn't do it after the first and now I feel much better.The second week you start feeling like yourself again.My treatment was Wednesday and I have been taking more naps
This weekend.We will get through this.
Rhonda
0 -
Indeed, we will Rhonda.
0 -
Hi, Maggie, Sylvia, and all,
Maggie,sorry you have the neuropathy, I also have it since chemotherapy. When I first finished chemo, it was very bad. I had injured my shoulder during the treatments, and afterwards it would flare with pain and would seem to set off pain over my entire back, neck and basically everywhere. I was miserable and didn't exactly know then what was going on, I asked doctors and was offered many things and prescribed a few. My GP told me the horrible flaring pain was probably going to last about 6 months, I tried a few of the drugs but decided to do without except I would take a pain pill at times, and ibuprofen, and couldn't do much at all with my right arm. I tried the Amitriptyline, it did kill the pain but I felt very odd along with it, and didn't take it long. What I was wanting to say, Maggie, is I think it will get better with time. I am 2 years past chemo, and I am better, shoulder still painful if I use it too much, but the great, flaring pain is gone. And Sylvia, it seems like the pain neuropathy causes after chemo can be anywhere, for a while anyway. Hopefully it will get better with time.
Sorry you are having to deal with the other conditions as well, take good care of yourself, and some of your problems should get better. Chemo, for some of us, is indeed the gift that keeps giving! (bad joke)
Later, Mary
0 -
Hi Mary,
I was about to logout but I saw you. I just want to say hi, nice to see you again. Hope all is ok with you. It's 2:30 am here and sleep finally caught up with me.
See you later. Hugs!
Gina
0 -
Hi, Gina,
Hello to you, you are a late-night gal! I am okay, and I am very glad you are doing well after your first chemo treatment.
Rhonda, I have an easier time copying and linking on my computer than on my phone, maybe if you asked nicely your son would let you use it for a few minutes? Haha. If not, then Gina can help you.
Talk to you all soon, sleep well Gina. Rhonda and I are dealing with a time-change today, now it's getting dark here and only a little after 5 PM.
Mary
0 -
Feeling a bit down today. No problems, feeling pretty good. Some days it all seems unbelievable...like a story I heard or a book I read about a woman with breast cancer. Not me‼️ But, today out of the blue, the thought popped into my head that it was indeed me who had breast cancer and will be forever under the threat that it might come back. I know you've all felt this way. It's so damn hard sometimes to be strong and positive.
0 -
Hi Cathytoo, Maybe this will cheer you up. Let's try to kill cancerwith laughter.
0 -
it's surreal isn't it? You are going so well tho! I haven't finished treatment and still imagine the worst with every ache and pain! It's terrifying and I hate the way it makes me feel! I am in awe of all of the brave women on this site who areso courageous
0 -
Hello everyone,
I am just popping in to say that I am glad to see that those of you going through chemotherapy treatment are keeping one another company and corresponding.
Hello Rhonda,
Thank you for all that information about Ayurvedic medicine and massage. Yes, the print was small. Hopefully the information from Gina will help. I do not know how you all manage to post on your smartphones. I do everything on a laptop with a 17 inch screen.
Hello Gina,
I am glad to know all is going well after your first treatment. It is interesting to know that dexamethasone can also relieve rheumatic arthritis. How much do you take for this and do you take it long term?
Keep doing well.
Hello Kath,
I was glad to know that you had a good day yesterday after your second Taxol. Keep looking forward.
Hello Mary,
It was nice to see you back on the thread. It seems as though peripheral neuropathy is one of the lasting side effects of chemotherapy and probably radiotherapy. I have been told that this kind of neuropathy from chemotherapy etc. is not the same as diabetic neuropathy, which is due to bad circulation. I was told I have excellent circulation in the feet.
I was glad to see you talking to Maggie from Scotland. I do hope she keeps on the thread. It is so good to get other peoples' experiences.
How are you settling in for November? It is not my favourite month and I do not enjoy the long dark evenings.
Hello Cathytoo,
I was sorry to read that you are feeling a bit down today. I think that is how we all go through the tiring days of treatment and then post treatment when we have our check ups with all the anxiety that brings.
It is true that we are all under the threat that the cancer might come back, but as time goes on most days we feel normal and do not think about cancer.
Best wishes to all of you. Your journeys will finish and you will get back to a normal life.
Sylvia xxxx
0 -
Hello Barbed and Maggie,
I do hope you will keep in touch and let us know how things go for you.
Best wishes.
Sylvia xxxx
0 -
Hello Lamis,
I am posting on the thread to say that I have read your PM and that I shall be replying later on today. I can understand what you are going through.
Why not join us on the thread where there are quite few women going through chemotherapy and you will learn all different experiences. We do have people coming on the thread to post on behalf of others going through treatment.
Wishing you all the very best and I shall answer your PM soon.
Sylvia xxxx
0 -
Hello Hanieh and Amanda,
I am just posting to say that I miss you both on the thread and hope to see you soon.
I am still very busy, but always have time for my friends on the thread.
Fond thoughts,
Sylvia xxxx
0 -
Hi Sylvia/everyone
Hope everyone is feeling ok.
I've not been on the thread for a while I've been stressed/ busy at work and also have had a sinus infection. I have not had one before but I tell you it was very painful. The pain was in my teeth and all the side of my face. I don't like to take antibiotics but had no choice. Anyways finished the course and feeling a lot better now.
I haven't been able to catch up on many messages but I did read the one about Ayurvedic massage. I'm really interested in this , I have heard about it before but don't know a lot about it. I do know that many therapists do not like to give massages to people who have had cancer, so is this different? I do believe that treatment should be of the body and the mind and if this is worth having I will search for a therapist in my local area.
I have been having a few aches and pains in my hip and joints. Before treatment I took a cod liver oil capsule each day and have started this again. I'm not sure if it's in the mind but my joints have felt a lot better. Does anyone else take these?
Anyway hope all are well and sending lots of love
Amanda
0 -
Hello everyone,
Had a bit of a scare today.Went for
My morning walk and was fine but I don't think I was eating or
Drinking enough.I was by the lake with my daughter and grandchildren And I felt dizzy and fell.I might of passed
OUt.Spent rest of day hydrating and resting
0 -
Hi Amanda,
Ayurvedic massage has no problem with someone that has cancer.In fact it is a healing massage.Please check it out,I plan on trying to find someone else so that I can continue getting massages
Since Dr Jay lives in Los Angeles and only travels
Here 3 times a year.
Rhond
0 -
Hi, Sylvia,
Today I was in Walmart, and saw the liquid coconut oil you mentioned. Sorry I didn't respond about it sooner, seeing it jogged my memory. I have read conflicting reports on the benefits of coconut oil. Some say good, some say bad. What to think? I have been using it in a limited fashion, maybe I will find out next time I have a cholesterol blood test. It's never been high, so I will be able to tell. I noticedc that the solid coconut oil is labeled "virgin, unprocessed" etc. and the liquid is obviously processed since it is liquid! But still, the only ingredient in the liquid is....coconut oil! You can let me know what you think.
I hope your meeting went okay, it is extra work, isn't it? I have to go to meetings 4 times a year, I don't have to do a lot of prep, but there are some things I am supposed to take care of this month.
It is wonderful that there are so many new posters, but I do get lost in them sometimes!
Hope all is great with you!
Your friend, Mary
0 -
Hi Mary,
Here in the Philippines, we have lots of coconut products and we regard the Virgin coconut oil as the most beneficial. It can be used for hair and skin, salads, cooking. We also have the regular coconut cooking oil but we dont use them much because many say it can elevate cholesterol levels. We use canola instead.
Hi Sylvia, wish you're ok. good luck on your new job. about the dexamethasone, I only took it just as you did, with my chemo regimen and one tab daily for three days. im ok except i think i am a little constipated (but i did pooped last nite), been drinking prune juice. I feel a little bit restless, fatigued, as expected. Tomorrow i will have my CBC taken.
Hello to all and talk again soon,
Gina
0 -
Hello Sylvia and Mary
Thank you both for responding to my post a few days ago. It's always so encouraging to know that others actuałlly do know what it's like getting through the cancer treatment.
Thanks Sylivia I've now sussed out how to check back on earlier posts without having to trawl through every forum/topic. I've still to work out where I should add more info about myself though because I thought I'd completed all the items. I'm beginning to understand more about how this all works and I can see that posting info here does not necessarily make it available or visible to others the future. I will try again soon to put more info up about me.
Take care both
Maggie
0 -
Take it easy! The fluid makes the difference
0 -
interesting day today! Pins and needles in feet and hands and nose bleeds all day as well as the toothache rom hell! God this stuff gets into every nook and cranny
0
