Calling all triple negative breast cancer patients in the UK
Comments
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Hi Rhonda
Thanks for responding. Were you offered the testing because you have a family history or are you like me in that you can't rule it out?
I'm presuming you're (still) having neo-adjuvant chemo ? I don't know if it does make a diffference or by how much but I'd asked for the genetic testing last February and I was advised to wait until chemo was out of my system (think I got it done in November after I'd completed all my treatments). I was told by the genetic counsellor that chemo can alter the DNA so genetic testing may not be as reliable (I don't know in which direction - false positive or false negative). You may or may not want to clarify this when you get your results.
Keep in touch Rhonda
Bw
Maggi
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Thank you Sylvia. I will let you know.
Bw
Maggi
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Hello Rhonda,
Thank you for your posts. I shall be interested to know the results of your genetic testing. It looks as though it might be getting easier for older women to qualify for genetic testing.
A happy New Year to you. I do hope it will be plain sailing for you for the rest of your chemotherapy journey.
Best wishes.
Sylvia xxxx
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Hello Chris,
I have no idea why things happen on tablets. I have just a laptop with Windows 10 but I know a lot of people are now posting on iPads and smartphones.
It is good that your lumpectomy is behind you and that you were able to get it done before the Christmas festivities. It was probably good for you to have your sister doing everything this year.
Congratulations on having a pCR. As you say, it makes all the chemotherapy journey worthwhile. Let us know when you have a date.
I was interested to know that you had been for a short break to Bideford, North Devon, during New Year. It is not far from Exmouth (about 60 miles). Back in the 70's I taught there for a year in the big community college and I enjoyed it. It is a nice little town. There is some beautiful scenery in and around Bideford and there is a nice scenic drive from there that goes through Torrington and Crediton and on to Exeter and Exmouth. It is a lovely scenic route.
It was good to know that you are doing the Mediterranean diet (also known as the rainbow diet) and doing some exercise. Walking an hour a day is a great achievement.
I am glad to know that all is normal with you now and your body will slowly get back to normal.
We all react differently to these chemotherapy drugs. Some find epirubicin or doxorubicin very difficult, some have reactions to cyclophosphamide and for others it is the taxane drugs. I lost my eyebrows and eyelashes when I started on docetaxel (Taxotere) and I also had a metallic taste in my mouth. I kept well throughout but just felt fatigued. Nevertheless I do have peripheral neuropathy in the feet as a result of the docetaxel, but most of the time it does not bother me too much. It is good that you have avoided this neuropathy.
I was glad to know that you read the thread frequently. It makes everything worthwhile. It is nearly six years and four months since I started the thread, because I thought we were in the dark ages with TNBC.
Have a very happy, healthy New Year and pop in when you can.
As for updating your signature with details of surgery, radiotherapy etc., you need to go to My Profile at the top right hand side of the page and click on it. This will take you to the various sections and you will be able to edit them and tell us a bit more about yourself if you wish. It is interesting to get to know people other than through their cancer diagnosis.
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
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Thank you Sylvia. I will let you know.
Bw
Maggie
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howdy Rhonda
Had my 11 th dose of taxol yesterday and last next Thursday . I found that I got muscle ache in my right shoulder from a previous rotator cuff tear and pins and needles in my legs by day 4 which settled before the next dose. By dose 7 I had fever and a cough and a rash when I went out into heat. Then by dose 8. It seemed to settle except for shoulder weakness so the effects are cumulative but by no means as bad as AC. I currently have pins and needles in the tips of my fingers which are mild and bearable so seems to be settling.. I haven't iced them.
I'm still concerned about my shoulder but my gp thinks it may be spasms but he has given me a X-ray form and said to wait until after chemo to see if it settles.i should get now for my own peace of mind but I'll wait! Mapping breast scan and tattoo on 18th then rads for 4 weeks on 30 th. liver enzymes have come down which is good. So basically it reached a peak by dose 7/8 and has plateaued since.. Stil terrified about shoulder but I've decided to try exercise and treatment first
How are u doing?
Cheers
Karh
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Hi Maggie,
I was adopted so I have no family history.I will ask about
The reliability of the genetic testing while on chemo.Yes,I am still getting Taxol weekly for 12 weeks.I just finished 5th week and so far so good.
Rhond
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Hello Kath,
Thank you for giving a good detailed account of what your experiences have been during your chemotherapy journey.
I do hope the pins and needles in the tips of your fingers will disappear but you should point this out to your oncologist.
January 12th is fast approaching so your chemotherapy will soon be at an end for you and I know you will be heaving a sigh of relief.
I have noted that your radiotherapy is due to begin on January 30th and that it will be for four weeks.
You should try to sort out your shoulder as soon as possible so that you can have peace of mind and get it treated.
Sending you very best wishes.
Sylvia xxxx
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Hi Kath,
Thanks for letting me know what to expect.I am doing really well.My appetite is back and no pain.A little numbness in my fingers,I am icing and hoping to start acupuncture.I started walking again after about a month or more.I fainted once and felt really dizzy on. AC.
I realize everyone is different but I did read that Taxol
Effects can be cumulative.
Rhonda
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Hi Sylvia, thanks for the explanation re updating my signature, I hope this is sorted now.
Could you or anyone who has already had radiotherapy explain to me why some ladies get 3 weeks and some 4. Also what are boosters?
Thanks,
Chris
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Hi Rhonda
Yes, so we're both in the dark re family histories. It will be interesting to find out what your specialists have to say about the influence of chemo on DNA. It's sounds like you're doing very well but good luck with remaining chemo.
B
Maggie
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seems to be settling with gentle exercise in pool Sylvia but not there all the time. Still
In the back of my mind. I will see how it goes after chemo. It may settke
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Hello Hanieh,
I have just looked back and saw that your last post to me was on December 31st. It was part of a combined one to Mary and all dear friends. Somehow I did not reply to it personally. It must just have slipped my mind as I do always try to answer, but sometimes there are many posts all at once.
I was glad to know in that post that all is going well with you and that you are busy with work and duties.
I was sorry to read about your friend who was diagnosed two years earlier than you and that she is now having a diagnostic lumpectomy of a suspicious mass. I can understand that you are worried for your friend.
Can you update me on what has happened since then, since we are now at January 7th? I do hope that your friend had good news.
This breast cancer business is so awful and it is tragic for all these young women. There has to be a reason for it. Cancer is supposed to be an illness of old age, but that is just not true any more.
I know you are busy, but try to keep up with the posts as we have several women going through chemotherapy who need your words of comfort and support. The thread needs posters in order to keep going. Just a line with words of comfort, or tips on how to get through is all that is needed.
Thank you for your very kind words. It means a lot.
I do hope all is well with you, your daughter, husband and family.
What is going on in Tehran these days? It seems lots of cities are suffering from pollution in the world. There has been a lot of fog in England.
Love.
Sylvia xxxx
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Hello Chris,
With regard to radiotherapy treatment, and the duration of it, I would think it is the oncologist who decides how much radiotherapy an individual patient will have. I would think it would depend on many factors. It is the same with chemotherapy. Although we tend to think that with treatment t is one size fits all, this is not the case. Each patient's cancer is individual. As for radiotherapy, three weeks seems to be common, but some patients have four or even five. The intensity of the dose may be different.
I had three weeks of radiotherapy with boosters. I asked how the boosters would be administered and I was told it would just be added to the general treatment and not something added on.
I do not think this is something about which you need to worry? If you feel you want more details, just ask your oncologist. She or he is there to answer all your questions. You must feel free to ask anything you want. Radiotherapy is used as the final stage in standard breast cancer treatment and I was told it is done to mop up any stray cells that may be lurking around. Remember that chemotherapy is systemic and that the drugs travel through the body, whereas radiotherapy is localised and concentrates on one particular part of the body, mainly over the surgery area and lymph nodes under the arm. The part to be radiated is mapped out at the pre-radiotherapy appointment when you are placed on a prototype of the actual machine. I also had an interview with a specialist nurse, who advised me about how to take care of my skin etc. during radiotherapy. I remember the routine very clearly. I would arrive at the radiology department and was usually called in on time. I had already been issued with a smock to put on and when I was called in I made my way to a changing room to remove my top clothing and bra and to put on the smock. The smock was able to be opened over the breast part ready for the treatment. You have to make sure you have no metal on you and not to use talcum powder. I was also advised to wash with Simple soap or aqueous cream during treatment. When you are changed you are taken into the radiotherapy room and carefully placed on the machine. The nurse leaves, the room is darkened and from outside the radiotherapy machine is switched on. It is not on for long and that day's treatment is over. What is tiring is having to go for treatment five days a week, with a break at weekends, and then another five days on etc. You still need to take care of yourself, because this is toxic treatment and you can get very tired. Most patients find it easier than chemotherapy.
I hope this helps but feel free to ask any more questions if you have them.
Sending you fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and all
Sylvia, my friend had lumpectomy last week and the results will be ready in a week. Her doctor believed it didn't seem to be malignant. Now we hope the lab results agree with her opinion. Our hand are crossed until then.
Tehran had some days of clean air as a result of rain and wind. Yet, today the weather is again polluted and the day cares and elementary schools are closed tomorrow. But I'm not off and I should go to work.
Mary, unfortunately we don't have anything like what you said about air purifier. Just wind, clouds, rain and snow can help us with the pollution.
Wish all the best
Hanieh
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Hello Sylvia
Thank you for your good wishes and a belated happy new year to you.
We are still in London; the house is sold 'subject to contract' and we have yet to finalise a date.
I have been dragging my heels a bit, as I have been feeling a bit ambivalent about the move. My head tells me it is the right thing to do, but my heart tells me otherwise .......It is a big step, but I am trying to look on it as an exciting new adventure.
I only read posts here from time to time, but I can see you are still doing a great job keeping this thread going!
With love,
Sam
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Hello Hanieh,
I do hope your friend will have good news when she gets her lumpectomy results next week. The fact that her doctor believed that it not seem to be malignant is good. We all know how difficult it is waiting for results. Keep hopeful.
This pollution problem is one that needs urgent attention. It will not be doing people any good. Children especially will be very vulnerable.
Tomorrow Monday January 9th should see a normal week beginning here in the UK. I am looking forward to that.
Sending you best wishes.
Sylvia xxxx
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Hello Sam,
It was so good to find your post on the thread.
I can understand what a difficult situation you are in. it is said that moving home is one of the big stress factors in life.
I can understand that moving from London to Herefordshire is a really big decision. You will be leaving behind so much that has been part of your life for such a long time, so all that you can really do is look upon it as an exciting new adventure.
I do hope you are keeping well.
Keep in touch.
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
I am posting to make sure all is OK with you as I have not noticed any posts in the last few days. Are you just having a rest?
I wanted to let you know that I have just been reading my latest edition (January) of What Doctors Don't Tell You (WDDTY). It has such a lot of interesting articles this month. One that you will probably like to read is the one entitled News Focus: Chemo's early victims. In the magazine it is a two page article. The other headlines in this article are Chemo's time line, which traces the history of chemotherapy from 1907 to 2012 and the other headline is Immunotherapy: the great new hope.
Sending you my very best wishes from a damp and gloomy Exmouth. The news from this country and around the world seems to fit the weather!
Fond thoughts.
Sylvia xxxx
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Happy Sunday Everyone,
I went briefly back to work in late Dec, then worked 4 days this past week. It was tough. My energy is back after finishing chemo on Nov 1, but I still have discomfort from a BMX on 12/2. It seems there is still a limit to the amount of activity and stretching that I can do with my arms and chest muscles, though I officially have no restrictions. It's a little frustrating, because it's just really skin healing, but as Sylvia said, this is quite a trauma to the body. If I overdo things, I get very sore and I have to stop moving to feel better.
Since I am flat for the moment, with extra skin spared for the plastic surgeon, I'm trying to find something to wear that doesn't irritate the area and the incisions. I have camisoles that I can use with breast "puffs," but there are days when I can't bear to wear them. I took the puffs out one afternoon, and then I forgot them in my desk! I just went without them the next day, and used layers and a scarf. I don't mind the flatness itself, but it is an extreme look, and I don't want to draw attention.
I'll be starting radiation soon, and getting prostheses whenever that makes sense. If I do reconstruction, it won't be for a year. I know I would prefer a procedure with minimal recovery time, but that may be a challenge. Anyway, I am pleased to be this far into my treatment, with a very good prognosis. On a weekly basis, I've shown great improvement. I was able to shop and carry things today, so I try to remember how lucky I am to be able to complain about relatively trivial things.
Pam
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Hi, Sylvia,
I am still here, I have had a nasty virus since last week; many people here have been passing it around. One of the drawbacks of seeing a lot of people over the holidays is making contact with a lot of people and whatever they are carrying around with them! And my immune system not fighting it off. So I have been quite lethargic, today am starting to cough up a lot of stuff and feel generally miserable.
Other than that, trying to keep up with the things I have to, and shelving the rest!
I did notice Debra celebrated 5 yrs. a survivor, hurrah! Rhonda, Kath,and Chris, and Gina are getting through their treatments, and Hanieh is waiting to see results of friend's lumpectomy; I wish all of these dear people the best of results. Maggie checked back in, I know she is an old friend of yours, glad to see that.
I will hopefully be back in a better state soon,
Talk to you soon,
Your friend, Mary
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Hello Mary,
I was so sorry to read that you are suffering from a bug and I do hope that you will soon be feeling better. I am surrounded by people here who have this bug, but I have managed to steer clear of it. Take great care of yourself.
It is good news indeed about Debra and as you say Gina, Rhonda, Kath and Chris are making or have made their way through chemotherapy. I am sure it will be a great relief to them when it is over.
There is still radiotherapy to come for them, but patients usually find it a lot easier.
This morning Raymond found that he had the latest email from Chris Woollams, dated January 7th. We have both been trying to get back on it. I still have nothing, but at least we now have the one on Raymond's email to use. As usual, there is a lot of useful information on it. I have printed off the email and read through it. The main titles are as follows.
1. So what are the 4 pillars of cancer?
2. Cosmetics and breast cancer risks.
3. Too much exercise can be bad for you. (especially if you have cancer)
4. This herb kills cancer cells.
5. Oops! I love it when scientists talk about new treatments. They suddenly become super-honest about the current ones, so do you want the truth on Radiotherapy?
6. Another "Breakthrough" prostate treatment.
7. This substance causes metastases. "We have been telling you this consistently". Now there is research proving it.
8. So you thought these new immunotherapy drugs were the safe future of cancer treatment. "The nice safe alternative treatment; the new frontier; the fourth leg of orthodox medicine - or more dangerous than anyone is letting on. One thing is for sure. They are Big Money for Big Pharma - read the research.
9. Everything you need to know to help you beat cancer.
10. We are building a new Church steeple. - This is about building a New Website. It says the one they have have is creaking. It is 12 years old, it has 3,800 pages on it and up to 15,000 visitors a day from all over the world.
Of course, there are all the headings within these main headings and I usually mark them off and then go back and read them all. I hope to do this tomorrow.
I am so glad to get back to Cancer Active and Chris Woollams because I have been with them since inception, when I was diagnosed in 2005. I do hope everyone will sign up to his free email and look at his website on line.
He is going to do another email in two weeks time and this will have lots of information on other chronic illnesses. They have almost finished polishing ChrisWoollamsHealthWatch.
Did you see my post to you in which I mentioned that I had been reading my latest edition, January of What Doctors Don't Tell You? It is packed with great articles, especially the one about chemotherapy, entitled Chemo's early victims.
Best wishes.
Sylvia xxxx
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Hello Pam (lilyp6),
Thank you for posting and for bringing us up-to-date on how everything is going for you.
It was good to know that you have got your energy back, but please remember to take it easy because it takes time, sometimes lots of time, to recover from chemotherapy.
In addition to this, you have had a bilateral mastectomy and that would be a big stress on your body. Just take it gently and give yourself time to get normal movement back.
If that were me I think I would just stay completely flat until I feel perfectly at ease with wearing something else. You need to let all those scars heal.
Make sure you feel healed enough to begin radiotherapy. Do you have a date for this?
As for prostheses make sure you get the right fit and the light weight ones. I had a mastectomy of the right breast, and wore 'softies' in my bra for quite a time before getting a prosthesis. I am hardly aware that I am wearing one these days, but you do need time to adapt.
It is good to know that you feel good about everything with your treatment.
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and all,
Just popped in to let you know that i will be getting my first Docetaxel treatment tomorrow after i got the second CBC with platelet count today. My wbc and rbc are still both below normal levels but my MO decided to push thru with my chemo. I had to take 5 days of Zithromax antibiotic till today for my cough, which i think i got from my son. It must be the changing weather, still a bit rainy here when it is already suppose to be sunny and cool at this time of year. I had to rush my 1-day confinement as i just got my blood results and MO's order. I have to be early at the hospital tomorrow to get a room assignment as previous patients usually check out in the morning and there's usually a long waiting line on a first come first serve basis. Wish me good luck.
Sylvia, I am amazed by your zest to know more about cancer and your interest in other's well-being. I can read from your previous post that you continue to be interested in finding cures and remedies thru newsletters and articles. If i were you, i might have already been celebrating and enjoying life after getting past the 10-year anniversary. You're on your way to 12 years now.
Mary, sorry to learn that you are not feeling well. Viruses are so easily transmitted when you meet so many people whom you are not even aware is infected. I got my cough from my boy, who must have gotten it from his classmates when school reopened last Jan. 4. Wish you get well soon so you can be your usual active self again and be with us more on this thread. You and Sylvia are the two most helpful and important people on this thread and both of you compliment each other very well, like coffee and cream or likeSonny and Cher, hahaha. Kidding.
Hanieh, i hope your friend will be ok after the lumpectomy. I also wish you and your family good health and fortune. Say, what happened to your dream to buy a car? Did i miss a post of yours regarding this? Keep in touch.
Regards to Rhonda, Kath, Chris, Pam, Sam and all who have been or are still in treatment. My prayers and positive thoughts for all of you wonderful ladies and gents.
Thanks also for your links, TectonicShift.
Happy thoughts,
Gina
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hi all
Last paxitaxol today! Mixed feelings! Still very frightened but onwards I go
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Good luck Kath. You're almost done with chemo. I'll be having my first docetaxel this afternoon. I'll be icing my hands and feet during the infusion, with or without my MO's consent as i have read of some of the severe cases of neuropathy in many of the threads here. Just last week, i talked to a former classmate who had chemo about a year ago for his lymph gland cancer and his primary complaint now is neuropathy. I will try to avoid that if i can. I also read that vitamin B6 and B12 help prevent neuropathy and i am glad that before my chemo started, my MO prescribed Iberet Active which is basically Vit B with C. But i am still going on with the cold therapy.
Take care and good luck,
Gina
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gmmiph - I think it is great that you plan on icing your hands and feet. I was absolutely paranoid about getting neuropathy and I took a cooler filled with ice with me to every chemo session for my feet and my hands. I did use the mittens they provided somewhat, but found them quite cumbersome. So mostly I used the ice. When my oncologist realized how serious I was about preventing neuropathy, she reduced my dosage of chemo. I do understand that most people do not feel comfortable getting their dosage reduced, but I felt fine with it. I also had acupuncture 2 times a week from an acupuncturist who deals only with cancer patients - he is a master of his craft, and I totally trusted him - in fact I still go to see him for a few sessions every year to boost my immune system. I also took B complex supplement along with Glutamine ( this was a powder which I mixed with water and drank a couple of times a day) which I had heard was helpful in preventing neuropathy. Wishing you good luck with your treatments.
Kath - you will have had your last taxol by now - that is a milestone. The fear is quite something, isn't it! I still can recall the immobilizing feelings I had going and sitting in that chair to get those treatments. Wishing you restful days ahead to allow your body to recuperate from the chemicals - it takes a while! Look after yourself and hoping that your shoulder will settle down soon.
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Hello Gina,
Thank you for letting us know about your first docetaxel treatment starting on January 11th. I do hope that all goes well with you today.
I do hope you will soon be rid of your cough. It is so easy to pick up colds and infections etc. when doing chemotherapy. Please let us know how today goes. I do hope that the ice will work for you and that there will also be no problems with low white blood cell count. I believe these low white blood cell counts are the worst that can happen, but luckily there are now injections to help with this. Good luck today.
I was interested in what you said about the way I am with my continuing interest in cancer, especially breast cancer, and my wanting to help others. That is just the way I am. I have a very enquiring mind and never stop educating myself. I have always liked helping others and taking an interest in them.
I do enjoy life and I think we all have our own way of enjoying it. I do not take my 11 ½ years survival from my diagnosis with TNBC for granted and I never shall. None of us knows what is round the corner and I have someone here whose breast cancer came back after 13 years and she is now 15 years on since diagnosis, two of those years spent on and off dealing with metastatic breast cancer. Yesterday I was talking to a neighbour who was diagnosed 28 years ago with breast cancer. She just had a lumpectomy and radiotherapy at age 28. At that time of course she was not told about the receptor status. It could well have been TNBC. She is full of life, but we both say never take anything for granted.
Like you, I do hope Mary will make a quick recovery from her virus. She is a great person to have on the thread. Thank you for your kind words about the two of us.
Take care, Gina, and always be optimistic. I am sure your sense of humour is helping you through.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I am just popping in to wish you luck for tomorrow when you will finish your paclitaxel (Taxol) chemotherapy treatment. I did tell you from the very beginning that you would get through this. I know you will feel so relieved. I trust you will celebrate the day in your own special way. Make sure you drink plenty of water, get plenty of rest, and look forward to finishing this cancer journey completely.
Thinking of you and sending you very best wishes.
Sylvia xxxx
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