Calling all triple negative breast cancer patients in the UK
Comments
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Hello Cynthie,
Thank you for your post. You are certainly doing all the right things with your diet. I also enjoy very dark chocolate (90%) and usually have it with a mug of decaffeinated green tea.
You are dead right about risk factors. That is all they are and even if you have some, it does not mean they have caused your cancer.
It certainly seems that there is some dysfunction going on with our hormones and goodness only knows what this is doing to the normal functioning of our bodies. Thyroid problems seem to be very common, especially under active, which is another risk factor for breast cancer.
One of my nieces had an over active thyroid as a teenager and had to be hospitalised. I was speaking to a woman today who has been on thyroxine for twenty five years for an under active thyroid. I have doubts about thyroxine. It produces thyroid hormone for you, so I would think it makes the thyroid lazy and less inclined to produce thyroid hormone, so you would have to keep increasing the dose! I understand that an under active thyroid makes you pile on weight.
As for parathyroid problems, I do not think they are as rare as we are told, they are just under-diagnosed, because testing for problems is not part of basic full blood tests.
I was interested to read about your problems with hyperthyroidism.
I am glad to know that you are leading a normal life, getting out and about and enjoying yourself with friends.
Wishing you all the best.
Sylvia xxxx
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Hello Linali,
I was just wondering how you are. I know that you have alot going on in your personal life,but I always glad to know that you are keeping well'
Hello Michael,
I was wondering whether you read the article about hair dyes in the Daily Mail this week. I remember you said you had been in hairdressing. I was disappointed that no one posted to offer advice about you heading. Did you go ahead with
Hello Sam52,
I just wanted to let you know that my GP said my PTH levels could still arrive.
Hello Jenn UK,
How are you doing? Are you still waiting for chemotherapy?
Best wishes to all of you,
Sylvia.
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Hello Liv,
What have you been up to this week? Have you done anything exciting?
Hello Carolben,
How are you spending the weekend? Hope you are still feeling alright.
Hello InspiredbyDolce,
Hope you have a good weekend and keep up the good work with all your information.
Hello adagio,
I hope the weather is not too bad out in Vancouver. I have good memories of a holiday there. How are you getting on with treatment? Are you nearing the end?
Hello PeggySull,
You are nearly to the end of treatment. You must be counting the days.
Hello to our two Americans in Germany, susaninicking and Cynthie, you must be getting impatient to start your treatments. Waiting is always the worst.
Hello Maria_Malta, I hope you are still well after finishing treatment and still viewing.
Best wishes to all of you and thank you all for your contribution to the thread.
Sylvia xxxx
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My surgery (BMX with expanders) was last Tuesday, the 12th. I went to BS today and got pathology report. After neoadjuvant chemo (ACT), at surgery path report shows a residual IDC tumor of 7 mm. The original tumor (before chemo) was 3.1 cm. The BS called it a very good report as the response to chemo was more than 75 percent. Another thing in my favor is that before chemo I had only one positive lymph node, the sentinel node. Two adjacent lymph nodes were negative, so BS thinks the cancer was contained.
Nevertheless, I am quite disappointed as I was hoping for a pathologic complete response ( ie invasive disease completely gone.). That would be much better since I am triple negative. Any cancer that may have escaped into my body you want to have killed with chemo, and a dead//gone primary tumor is kind of a proxy for that. The MRI halfway through taxol (and after A/C) suggested that the only remaining cancer was around the rim of the tumor...the inside was dead. The surgical pathology report says otherwise...it's a 7 mm nugget of residual IDC.
I see my MO next week. She had said earlier that if there were residual invasive disease at surgery there are "a couple of things we can try" after surgery. We'll see what those are. The hormone treatments (eg tamoxifen, femara) won't work on triple negative.
Anyway, I guess I'm looking for encouragement/positive experiences from others as to prognosis with this particular path, especially related to the chance of metastatic disease. I am doing the most aggressive local treatment, as I did BMX and will do radiation in a few weeks.
I posted this same post to the surgery thread, so I go into some explanation about TNBC...more than this group needs. (I didn't want to retype.). Thanks.0 -
Hey Liv,
Thanks, but I think I'm just lucky to be still feeling so well, long may it last! I have my down times, but so cannot stay there - so no projecting into the future, staying in the day as much as possible and holding on to hope. The port gets a bit sore when I use my pectoral muscle on that side, so after 110 yards of swimming, I had to flip on my back and just kick up and down for a while, alternating strokes also helped. Also been doing lots of chest opening yoga and opening and relaxing both sides of my chest. I get these pains and think oh my god it's the mets, but then when I get into bed at night and relax they go, so it's pure tension. Got some meditation DVD's in to listen to. Stress is not something any of us need any more of now!!!
My sister in the States is doing a yoga course, specifically for people having treatment for cancer. How cool is that - she'll have all the notes etc with her when she comes next month - she's just amazing! I have a friend who is a massage therapist and has magic hands - and she gives me these neck, back and shoulder massages, which just easy all tension and muscle knots, such a treat!
Hoping the Navelbine will be easy on you, Liv, you're a brave, upbeat, shiny soul,
Lots of love and hugs
Carol
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Hi Sylvia,
Thanks for your encouraging words. They give me a bag of steroids and an anti-hystamine, and an anti nausea (Ondansetron, this time, I think) before they give me the Taxol. All takes about 2.5 hours.
I get a 2 day headache after chemo and take paracetamon with a bit of codeine in for that, but sparingly. I just try and get as much water down me as possible in the first few days after chemo. The take home meds are only anti-nausea so far - Zofran and Ondansetron and Clopamon, which I think also has a general anti ache ingredient in it. They're not giving me the big guns in the way of anti-emetics, but it's not necessary, they say, and so far, so good.
I'm not having any joint pains yet, but they will give me something for that, if necessary. I'm really sad at the thought of losing my hair - I just love my curly, do your own thing, crazy new hair, and I so DO NOT want to get that bald, pale, chemo look!!! But if it does fall out it shouldn't do it until about half way through, so I can still enjoy this hair.
I'm trying really hard to live in the present day - the most I can deal with is the next 6 months, I have a plan of treatment and it's do-able. I'm feeling well still, not working (such a treat, tho I've gone in on the odd day to help out), so can do all sorts of fun and good things.
I'm going up to Johannesburg from March 6th to the 12th, on my break between round 1 and 2. I wont have much time to see my Dad on the big birthday trip up at the end of March, and I really want to spend all the time I can with him - he's not going to be around for much longer. It will also give me time to spend with my nieces and their kids, who are my proxy grandkids, and my sister and her husband too. I feel like I'm going out of my comfort zone, but then my sister's still living in the house where I grew up, from birth to when I left school, and it's as close to my second haven as possible. Horrible to feel scared at being far away from your doctors!! But they are always on the other end of the line.
I'm using a tsp of bic soda and a tsp of salt in water for my mouth, which is verging on raw again. Had a red meat craving the other night, so had a lamb chop (free range) with baby spinach, a baked potato and carrot. Am juicing with beetroot to detox - also ginger, apples, celery, carrots and baby spinach, or whatever is in the fridge!
Been quite tired - have been having an hour and a half nap every afternoon - then still sleeping through the night! It's such a luxury to be able to nap in the afternoon! I've also been learning to screen print on clothing with a friend of mine, which is fun. Pls forgive me if I'm repeating stuff already said, my brain feels fried still. I keep thinking it's getting better and then do really stupid things like loose my scooter keys, repeat myself, walk around the house womdering what I'm looking for..... I write everything down now too!
Anyway, it's the weekend again, and I hope it'll be a good one for you!
Lots of love
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hello lovelies ((hugs))
sylvia ((hugs)) hope your relaxing and enjoying the weekend and perhaps you will let your dh hav a fig biscuit or two..lol
lets face it just about everything has something in it they could be detramental to our health. still say its luck of of draw and those damn ancestors of ours giving us dud dna's..
carol and ben ((hugs)) you really are giving the monster a run for its money and im so pleased, getting on with things and all that swimming, i envy you, thats another must/want to do. why is the port hurting you, hope you havent got a slight infection.? and hows that your sister doing yoga for cancer patients. ive been back twice to yoga and it doesnt seem to be gettng any easier. i get so frustrated.
lolalee ((hugs)) hope that pain is nothing and you get it checked straight away.
today is much cooler over here so my girlfriend and i are off to the races. im a useless punter but just love watching the horsies and seeing everyone dressed up and of course a few reds is a must at the races.
love to everyone, try and keep strong those doing it tough.
xxx
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Hello placid44,
Thank you for your post. I have read your details very carefully. It looks as though your neoadjuvant chemotherapy did a good job on shrinking the tumour, since it has gone from 3.1 cm to 7 mm. Chemotherapy does not always shrink a tumour completely, it will depend on the initial size. Like you, I also had neoadjuvant chemotherapy to shrink a large tumour of 6+ cms and it shrank to 4 cms which was quite good. I then had surgery, right breast mastectomy, and had a complete pathological response and was told there was no visible sign of cancer in my body. That was back in May 2005. Like you, I had just one positive lymph node before chemotherapy and that was also the sentinel node. Seven were removed, but all the others were negative.
Your breast cancer surgeon, I would think, is right to think that the cancer was contained.
Since you have now had both breast removed, I would stop worrying about the fact that neoadjuvant chemotherapy did not completely shrink the tumour. This is all behind you now.
If I were you, I would wait to see my MO next week and see what she has to say.
After my neoadjuvant chemotherapy and then surgery, I finished my treatment with three weeks of radiotherapy that included boosters. These boosters are not separate from the five daily doses of radiotherapy each week, but are included in it. The radiotherapy is usually used as the last part of any treatment to mop up any stray cancer cells. After that I should think you will have peace of mind, at least as much as any of us can with this disease.
We have to ignore all this doom and gloom about TNBC.
I hope this will reassure you. For me, it is now seven years, eight months and three days since diagnosis. I am well and living life in a normal way.
Let us know how you get on with your MO and your date for radiotherapy.
Wishing you all the best.
Love.
Sylvia xxxx
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Hello Carolben (Carol),
Thank you for your post and for the details about your chemotherapy treatment.
I was interested to know that they give you a lot of steroids, an antihistamine and an anti-nausea medication. Do you get these in pill form? I know I ask a lot of details about this, but we always have to bear in mind the newly diagnosed. I do not remember taking any medication before the actual intravenous chemotherapy treatment. I think I must have been given these medications through the drip with the chemotherapy drugs. I just remember a pre-chemotherapy bag, then a saline bag and the bag with the chemotherapy drug. Do you think the steroids are part of the anti-nausea anti-sickness medication?
With the steroids I am just trying to figure out why they seem to have such an effect on some women. I must have had them in my drip every three weeks for six months. That is not a lot and I do not seem to have had any side effects from them, such as weight gain, insomnia and generally feeling on edge, that are mentioned on some threads.
You are doing the right thing in drinking as much water as possible in the first few days after chemotherapy. I did the same.
I was glad to know that the treatment seems to be going so well. It is good that you are not having any joint pains. As far as the hair loss goes, just wear a nice wig and remember the hair will grow back. I loved my wig, and wore it all the time. Going bald, or wearing scarves or hats was definitely not for me.
You are right to concentrate on one day at a time. I still do that. I have a philosophy of life that tomorrow may never come.
I do hope you have a nice time in Johannesburg and that you will enjoy your time with your Dad. We just do not realise how much we shall miss our parents until they are no longer with us. My dad died back in 1977, just six months past his seventieth birthday, and died suddenly and quickly of an aortic aneurysm. I had just gone to Canada and had been there just two months when he died. My mother died in 1991 of valvular heart disease, aged seventy eight and family life did not seem the same after that.
I am sure you will have a good time with all your family.
It sounds as though you are continuing with your healthy diet and that is a good thing, as is having a nap in the afternoon. I used to do that most of the time as I thought that resting my body would be helping my immune system to fight.
You are doing really well, Carol, and we are all behind you.
Sending fond thoughts your way.
Love.
Sylvia xxxx
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Hello Liv,
Thank you for your post. I do agree with you that everything in our daily life has probably got something in it that is detrimental to our health. We can only do our best but we must not forget to enjoy life and enjoying life is very subjective and very different for different people. You are right too that it is the luck of the draw. We can do everything we think is right and still end up with this awful disease. The women near to me here in Exmouth all looked fit and healthy and yet got diagnosed with breast cancer. As you say, and as my consultant said long ago, your breast cancer could be the result of something that went on when you were just an embryo.
It is very cold here in the UK and in Exmouth it is just 4 C. We have had a very cold autumn and winter, but I think we shall have to get used to them as in the past many years we have had unusually mild ones. On Thursday the wind was really biting.
I am trying to relax more at weekends, as I am quite busy during the week with my director's work here in our apartment complex. The weather is not very nice for walking around and I am a bit incapacitated with a sprained ankle and pulled tendons. I shall probably do some reading later on and I have a good book entitled “Consumed – how shopping fed the class system” by Harry Wallop. I think it is going to be entertaining, amusing but serious. You probably know we are strangled by the class system here. Would you believe the latest status symbols are hot tubs and American refrigerators!!! Is there a class system in Australia? Our will not disappear until we get rid of the monarchy.
I do let my husband eat what he likes, provided I do not have to eat it as well. He does have a sweet tooth, but not as much as he used to. He does love fig biscuits, as well as pain au chocolat. I usually tell him to get whatever treats he likes. We both like 90% dark chocolate, so that is our favourite treat. If I feel like something sweet I tend to eat some organic jumbo raisins or organic unsulphured dried apricots. We both love cherries.
Last night we were watching a good programme on the television about the history of swing music. It was very entertaining and informative and a pleasure to see all the fast dancing of the 1920s and 1930s, such as the Charleston and lindy hop.
I hope you have a good weekend and that you have lots of fun and laugh a lot.
Sending you fond thoughts.
Love.
Sylvia xxxx
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Hi again,
Sylvia, I also had steroids (they give a bag in the drip before chemo) with the original chemo and didn't have any steroid highs. I think maybe having a bag before chemo every week, instead of once every 3 weeks, may be what does it. They give me an anti-hystamine tablet before the chemo too. Then they also put an anti nausea injection into the drip. Then the rest of the anti nausea drugs are given as take home pills.
Buzzed around all night till after midnight (so not like me), could sleep only 3 hours, tossed around for another 2 and then got up. Buzzed around all day too, meeting up with friends, doing a couple of chores, got home after 4pm! Now I'm sitting on my bed, writing here. It's too late for an afternoon nap, but I will have an early night, and a quieter day tomorrow. I think doing things in the morning is good, gives me time to rest when I need to. Am hoping I'm winding down now, certainly feels like I'm about to come to a standstill.
That's the part I dont like - not knowing my body's limits - like how far can I push, how much do I need to do, how much to rest and not overdo that. I want to do things "right", what's right is what I hear my body saying, I guess. I never have doubted my physical ability to do anything before - this is new and I don't like it one little bit.
However, it's a learning curve, I'm sure, and my spirits are good.
Stick with the yoga, Liv - it will get easier - you will start to feel your joints open and get a whole new awareness of your body. I can maybe share some of the stuff my sister brings over with her?
The port itself is not hurting, but when I move my arm in a certain way the pectoral muscle feels like it pushes the port. The opening yoga is helping and I'm doing gentle exercise and will swim until just before it hurts. No infection, but there's not much room around there where they put it - I'm so bony at the moment still. I'm sure it'll settle down, had a lovely massage and that really helped a lot. Got to remember that gentle is better than bull in the china shop mode!!
My dogs are at the beach with other doggy friends. I'm just going to warm up soup and toast for supper and speak to my son a bit later. Then to bed, hopefully to sleep!
Lots of love
xxx
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Hi Sylvia,
Thank you for your detailed response on preventative measures.
I have always eaten well and have generally lead a healthy lifestyle. I am reasonably tall at 5' 9" and reasonably slim. There is no history of cancer in our family and my mother who at 91 is very fit and healthy still lives in her own home. My hubby and I recently celebrated our "ruby", where does the time go?
Scans for the groin pain did not reveal anything sinister so I am happy about that.
Yes I did have 2 areas of DCIS, the second area was missed at the time of the first lumpectomy. I was considering radiotherapy and insisted on another scan prior to treatment when the second area was noted. It had been there all along just not picked up. After that I decided to go with the Mx. Radiotherapy was then not recommended. I will be insisting that the BS provide the HER2 at the next appointment. He originally said it was not necessary as it was pure DCIS stage 0 and because I would not be doing chemo there was no need. Don't know why he resisted as I had asked twice. I was also interested in the oncotype but received the same answer.
Hong Kong is a fabulous vibrant city, very overcrowded and extremely busy. The traffic is a nightmare but the shops and markets are full of wonderful bargains. I will be going to a buffet lunch today at the Mandarin Hotel which is always a tasty feast. The dim sums and yum cha are always a favourite. HK is well known for its array of different food.
The weather is mild and it will not be long before the heat and humidity hit. People are always surprised when I tell them that HK does have a winter and it is particularly cold around Lunar New Year, but not for very long.
Hope you enjoy your weekend.
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Hello Liv,
Tests for the groin pain did not reveal anything other than the L5 and L6 degenerative conditions that I have had for years. Thank you for asking. I slipped in my younger years and really whacked the spine which progressively becomes worse. At the time I do remember bruising the backside badly but as I did not suffer any broken bones I did not even go to the docs....well I sure am paying for it now.
Enjoy your weekend.
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Hi Carolben,
Seems like you have everything under control and your treatment is progressing well.
I think you are marvellous with your fitness regime and the yoga and swimming must be beneficial. Enjoy your soup and I hope you manage to get a decent nights sleep.
Best wishes, Lola.
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Hi Sylvia,
Do you happen to know the name of the show you watched about the history of swing music? I dance Lindy Hop and Swing. It's a great workout and lots of fun!
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Placid44,
Please post back and let us know what the couple of options your Oncologist is going to try!
The fact that the majority of your bc was gone from the treatment is great news. The only amount that was left was around the rim of the tumor. It could be that there is fat around the tumor, and maybe the fat is what contains the residual. When my tumor was removed, then 2nd lab showed there was a rim of fat around it. This worked out to be good news in my case, as it meant that my margin was larger than initially thought.
But I think trust your Oncologist. If there is ever a doubt, they will speak to other experts, and they have listservs and conferences, etc. They are well-connected should they ever have something unusual to discuss.
I think sometimes we hear what one person on here has, and we think we should have the same thing. But everyone's pathology is so completely different. Oncologists will also take into account outside risk factors, such as family history, personal health history, etc. And lots of things might appear on the pathology report that some Oncologists may not have revealed to the patient, so sometimes we only see a small part of the big picture of someone's overall diagnosis.
I do think all of your information sounds like they really have a great handle on things!
Now as for me, I'm having surgery on Mar 13th! This is in response to a small piece of scar tissue in right breast at base of implant. The MRI shows non-malignant, but I spoke to my Plastic Surgeon and he is removing it for me so I can have closure. Also, one of my implants is backwards (saline type) and he wil be replacing them with new ones.
So even 1 year out some anxiety still exists.
We will be watching for your updates - and best wishes to you!
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I had 4 rounds of Cytoxan and Taxotere every 3 weeks and had dose-intensified chemo - chemo given with 60% higher dosage.
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I have never heard of dose intensified chemo. I understood that dose dense was every two weeks and regular was every three weeks. Is this what your oncologist told you? Is this some new protocol?
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Hello Carolben,
Thank you for your post. I do think a good routine is to get up in the morning and have as normal a routine as possible, and then have some lunch and get into the habit of the afternoon nap or just lying down and resting your body. I tried to keep my life as normal as possible, but found I needed to go to bed quite early in the evening. It probably depends on what your routine was like before, but I am a morning person, always been very energetic, but not a night owl.
Do not push yourself too much. Remember your body is being put under a great deal of stress with the drugs. I think you are right to listen to your body and feel it will tell you if you are overdoing things.
Let us know how you get on with the second dose of chemotherapy.
Thinking of you.
Love.
Sylvia xxxx
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Hello Lolalee,
I was so happy to know that the scans for the groin did not reveal anything sinister.
I think you are right to find out about the HER2 and whether you are negative or positive. We need to cover everything that we can to make sure we get any treatment available.
I do not know much about oncotype, except that it is some kind of prediction about the likelihood of recurrence, but I thought it applied to women who were oestrogen positive. For anyone interested, if you Google oncotype, you will find plenty of links and information.
Hong Kong sounds very interesting. Tell us about dim sums and yum cha.
Take care.
Love.
Sylvia xxxx
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Hello Missy123
Thank you for your post. The name of the programme about the history of swing music was The Swing Thing. It was on BBC4 and was on for about an hour and a half. It had all the famous names from the jazz and swing era, people like Duke Ellington, Count Basie, Glenn Miller. I was impressed to know that you dance Lindy Hop and Swing and can imagine that it is a great work out and lots of fun. Do you dance the Charleston? I have seen these dances on the UK version of Strictly Come Dancing.
The link is:
http://www.bbc.co.uk/iplayer/episode/b00g3694/The_Swing_Thing/
Best wishes.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
I just wanted to say I agree with all the sensible things you told Placid44. I think we cannot emphasise enough that we are all individuals and that our treatments can vary, depending on our different circumstances.
I hope all goes well with your surgery on March 13th. Please let us know how you get on.
Wishing you well.
Love.
Sylvia xxxx
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Hello gillyone (Gill),
I, too, was a bit puzzled about dose intensified chemotherapy. I understood from my oncologist that the amount of chemotherapy drug given depended on your height and weight. I remember being asked for these in preparation for chemotherapy.
When I was going through treatment, the three week cycle seemed to be the norm. However, as I was finishing up I heard some new women in the chemotherapy ward talking about going on a trial with drugs every two weeks. Now, some women are having chemotherapy every week and seem to be doing well on it. I thought, like you, that dose dense applied to the two week or one week cycle.
I am sure InspiredbyDolce (Debra) will explain for us.
Best wishes.
Sylvia xxxx
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Hello Mumtobe,(Carol),
I just wanted to wish you well for your radiotherapy tomorrow.
Try not to be too hard on your sisters. Cancer puts everybody under stress.My brothers could not bear me to talk about it. They were afraid. Have a little family get together and enjoy yourselves.
Life is too short for these things.
Love, Sylvia.xxx
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Hi Ladies,
Thank you for the well wishes on the upcoming surgery. I hope to have our taxes done by then, that is my goal and it keeps me from thinking of the surgery.
I believe there are trials out now comparing dense-dose and dose-intensified. I weighed 118 and I am 5'5" at the time of treatment, and still received the 60% higher dosing protocol for both Cytoxan and Taxotere. My Oncologist did not discuss the details with me, and originally I was not even told what treatment I was on. He just operates that way, he explained though that I was going to be treated 'very aggressively' and that we were going to 'leave no stone unturned'.
When I started researching my amounts and the medicine, that is where I came across that he gave me dose-intensified chemotherapy. He had also several times previously mentioned that I had been 'over-treated'. I'm sure it just came down to something he felt comfortable doing with me. I remember in the beginning he also said since I was younger and in otherwise good health, I could tolerate a lot more. In retrospect, perhaps this is what he ws referring to.
Now of course, he and I have a very close relationship, he knows how I operate, and I get all the nitty gritty details from him now. Now he draws me pictures, shows me printouts, he explains about the RNA/DNA/MRNA levels of each cell, etc.
Also for chemo, he did not want me to start eating blueberries, or do anything special, and especially no juicing, etc. He didn't want anything to perhaps mask any target cells that we were going after.
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A government warning said that anyone travelling in icy conditions should take a shovel, blankets or sleeping bag, extra clothing including a scarf, hat and gloves. Also a 24 hour supply of food and drink, de-icer, rock salt, torch and spare batteries.In addition, they should take a Safety Triangle, tow rope, petrol can, first aid kit and jump leads.......................I felt a right prat on the bus this morning....
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Oh Bernie you always make me laugh! I luv it, we can all do with a good laugh from time to time.
keep them coming.
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Hello Bernie,
Thank you so much for returning to us to make us all laugh. I really needed that. I have been feeling in low spirits lately and your joke made me laugh. I think our long dreary autumn and winter has really dragged me down. The rain disappeared, but it is now bitterly cold.This country is in such a mess!
It is good of you to post when I know you are going through a sad and difficult time.
Three cheers for our Bernie.
Love, Sylvia.xxx
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Hello InspiredbyDolce (Debra),
Thank you for your post. I am sure doing your taxes will take your mind off surgery!!!
I was very interested to know that you think there are now trials comparing dense-dose and dose-intensified. I was very interested to know that you have been given 60% higher dose than the one you would normally have received for your height and weight. I honestly did not know that this could be done, as I thought the drugs had to be delivered strictly according to height and weight. Did you suffer badly from side effects on the intensified dose?
From what you say, information is much more detailed now than some years ago, but I think we have to be careful perhaps about getting too much information, especially if it causes us stress and anxiety.
I remember when I was diagnosed that I just thought my number was up and I would be dead within six months. I did not want treatment and I really grilled my breast cancer consultant and oncologist about their plans if and when I gave my consent. I wrote a detailed letter to my breast cancer consultant and asked all the questions that now seem to be given routinely. She seemed impressed with this and said it was all very scientific and that usually patients did not want to know anything at all. I think this set me on a good footing with her. I first brought up the term triple negative, which no one had used. As for the oncologist, she invited me for an interview and again I asked a lot of questions and asked her what drugs would be used and why. She was very open with me.
I think that with a forum like this and the internet the whole TNBC has opened up and there cannot really be any secrets any more.
I was not offered a copy of my pathology report, just told I had had a complete response. I now would not want to have a look at that report, just in case there are details that might cause me unnecessary anxiety.
It looks as though you have a good relationship with your oncologist.
In light of what you have told us about dose-intensified, I hope others will post to let us know whether they have had dose-intensified, since it does not seem to be as common as dose-dense.
Thank you for your great contribution to this thread.
Love.
Sylvia xxxx
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Hello Mishi,
I was most interested in your post. I was especially interested in what you said about being diagnosed with triple negative breast cancer, probably as a result of radiation treatment for Hodgkin's lymphoma twenty three years ago. It just shows me even more that both chemotherapy and radiotherapy treatment can come back to haunt you years after the treatment. We need to find alternative treatment that is not so lethal or even better spend more money of prevention.
I do hope that everything will go well with your chemotherapy treatment. I have noted that you are on a combination of carboplatin (Paraplatin) and paclitaxel (Taxol). This is not the common combination for treatment, but you probably already had the other ones with the Hodgkin's lymphoma.
I think there are not quite a lot of women in the 50+ age group being diagnosed with triple negative. I wonder what is causing this?
We do have a man on the Calling all triple negatives in the UK thread and he had Non-Hodgkin's lymphoma in the past and he is waiting for treatment again. I hope you will not mind if I copy this post onto that thread as well and please feel free to come and join us if you want. People are posting from all over the world.
Take care and let us know how you get on.
Best wishes.
Sylvia xxxx
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