Calling all triple negative breast cancer patients in the UK
Comments
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Hello Jackpot,
I was sorry to hear that you had been sent for a PET/CT scan today because of pain in the top of your spine and that nothing to account for this had shown up on an X-ray.
Your PET/CT scan sounds similar to the bone radionuclide scan that I had before and after treatment back in 2005/6. I get the impression that the PET/CT scan may have replaced the one I had and may be better. I do remember that it was a long procedure and that I started off with an injection through a cannula and then I had to wait a couple of hours before returning and lying on some kind of machine while a camera went around my body. I know I was radioactive for a couple of hours afterwards. All this was done to see if I had any problems in my bones because I had high calcium levels and it was thought the cancer might be in my bones. It turned out it was not.
What I do know is that I experienced no pain whatsoever with the injection or with any part of that treatment. I would not have thought that your arm should be battered and bruised. I think this has come about because of clumsiness in the person doing the injection. I do hope you will be alright and that the bruising will vanish quickly. I have found that arnica cream is very good for bruising and helps the bruising to heal more quickly.
I had one session of chemotherapy when I had bruising from a nurse trying to insert a cannula and my nursing friend told me the person was not doing it correctly. In the end they called the head nurse to do it!
Hopefully you will have no permanent damage.
Thinking of you and wishing you well and keeping my fingers crossed that the scan will show that all is clear.
Could it not be that the pain at the top of your spine has been caused by your two chemotherapy cycles of Cytoxan, Ellence and fluorouracil?
Let us know how things go on and that everything will improve. You are probably feeling a bit low at the moment, what with having endured two lots of chemotherapy and now this. Just remember you can get through this.
Fond thoughts.
Sylvia xxxx
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Hi jackpot
Sorry to hear you are feeling a bit rough. Can you tell me where the best place to get wristbands is? I might try that.
Regards,
Anne x
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Hi apandy
I got mine from ebay, there's cheaper ones and some are a bit more expensive but I think their pretty much all the same, you just have to make sure you put them on in exactly the right place but they do come with instructions on were to place them,
Let me know when you use them if they work for you
Take care
Jackpot0 -
Hi Sylvia
The pain was caused because the radioactive liquid they used leaked out of the vein and into the muscle, he said it was like putting salt into a wound,
I don't get the results till the 16th oct the same day as my third chemo but I'm not too worried as it was more precautionary because they couldn't see what was causing the pain....it feels more like a trapped nerve and maybe the X-ray just didn't pick it up...I've had this pain on and off since before chemo started so its that that's causing it,
I do seem to be having a hard time with needles at the moment, even getting blood took they said some of my veins have gone hard and had trouble finding one, I'm bruised there too, maybe I have just got clumsy nurses, I think I make them nervous though because I am a bit of a baby when it comes to needles
Take care
Jackpot0 -
Hello Jackpot,
I cannot believe some of the things that go on in hospitals. It does not seem right that radioactive liquid can leak out of a vein and into the muscle. I can just imagine how painful that must be if it is described as putting salt into a wound.
It looks as though the 16th will be a big day for you, what with the results to come and your third round of chemotherapy. I am glad to know that you are not too worried about the result and that you feel it is more likely a trapped nerve. I understand that is very painful but that chiropractors are able to deal with it.
Has your chemotherapy team mentioned having some kind of port since there are already problems with the veins hardening and being difficult to locate? There are different kinds of ports on offer and I know that a lot of women say that it makes the chemotherapy easier than having a cannula each time. I am not sure what is involved with some of the ports and I do know they have to be monitored to keep them clear and clean. It might worth asking about this if it will make the whole experience easier.
Are you going to your GPs surgery or having a District Nurse come to you the day before treatment to take blood to be sent to the hospital so that they know everything is in order and you can get on with the chemotherapy. This was the routine with me and I had the District Nurse come to my home so that I did not risk picking up infections at the surgery. I am asking what the routine is now because I want to make sure this thread is kept up to date. I am pretty sure that I sometimes saw my oncologist or her registrar and then went for my chemotherapy. As I say, routines can change and procedures can differ in different hospitals. I know that with the blood test they are looking at the level of white and red blood cells in particular.
It sounds to me as though you have some clumsy nurses. Just try to relax about needles, although that some on the thread have a fear of them. Just close your eyes and think of something nice.
What is your weather like in Liverpool? We have had some absolute downpours in Exmouth this morning. Raymond and I went to do our shopping at the supermarket this morning and I find it always makes me tired there. We miss most of the aisles so we can get round pretty quickly.
I have a bad cold at the moment which is pretty unusual for me so I am trying to rest and relax a bit more. I went to Holland and Barrett and had a nice chat with the manageress. She knows us pretty well. I bought some echinacea capsules to try to get rid of this cold. Echinacea has always worked for me in the past but I used to get tincture at the beginning of autumn. Under all these EU laws they are apparently no longer able to sell tincture or some of the very popular homoeopathic supplements. I also bought some astragalus capsules which are good for energy and the immune system.
Someone was asking about milk thistle so I had a read of the boxes on the shelf. It said they were good for over-indulgence, indigestion and stomach upsets, so I can see how they can be used for detoxing the liver. I have never tried milk thistle.
Thinking of you and hoping you will feel much better and get some nimble-fingered nurses to care for you!
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Yes the 16th will be a big day but I'm not going to stress about it,
The area around were I had the last cannula inserted is still really painful...is this normal
I have to go to the hospital either the day before or the morning of chemo to get my bloods done the district nurse doesn't come out, I don't know if that's the case everywhere else but that's how it works here,
The weather here not to bad, bit chilly but dry, just had a scare with my boiler not coming on but a bit of fiddling with buttons it seems to be working now ...hope that's not the start of thing to come with it, could do without any extra expense right now...
Sorry you've got a bad cold right now, I've been using enchinacea for a couple of weeks since I've been on chemo trying to ward off any colds and flus, I'm using the tincture though I'm surprised you had trouble buying it, think I got mine from amazon...
I've got milk thistle ready for when chemos finished to give my liver a helping hand
Hope your feeling better soon
Take care
Jackpot0 -
Hello Jackpot
Thank you for your post. It is hard to say what is normal or not during breast cancer treatment, since we all experience the cancer journey in different ways and I keep reading that a lot of what you experience may be down to your state of health when you start. To answer your question about whether it is normal for you to experience pain, where the last cannula was inserted, I would say that I do not think you should be experiencing pain if the cannula had been inserted properly, but if it was not then I would think pain would be normal. I just hope it does not last too long.
I was interested to know that you have to go to your hospital either the day before or the morning of chemotherapy to get your bloods done. With my own treatment it was very relaxed for me. A really pleasant District Nurse came to my home on a Monday morning ans she was always so cheerful and we had a nice chat. I then went to the hospital in Exeter the next day. I was lucky that I never had a problem with bloods and I had some good conversations with the nurses who administered my chemotherapy.
I do hope you will not have any problems with your boiler, especially at this time of the year. Do you have a combi boiler? I know some of my neighbours here find them difficult to manage. I think the secret is to keep an eye on the pressure gauge and check that it is not too high or too low and try not to fiddle with it too much.
I think I am getting over this heavy cold. I have been taking extra vitamin C for a few days and have had 48 hours of echinacea and astragalus, not to mention lots of green tea, triple ginger tea with some fresh ginger root, and plenty of citrus fruit.
I do hope you have a good weekend and can find something pleasant to do while you are waiting for your next chemotherapy.
What do you do during the autumn and winter to pass the long dark nights? Everything seems to happen so suddenly and summer just disappears. We have had so much rain in Exmouth in the past few days and the lawn is once again vivid green. The holiday makers have long gone but there are coach loads of retired people arriving all the time and they seem to love going on boat trips! It is strange that with the departure of the holiday makers there is absolute silence from the seagulls and pigeons. It is almost as if the noise from the holiday makers and all the activity disturbs them. It is eerily quiet here today.
It seems to me that in every magazine that I open I find articles on breast cancer. I found this bit in Yours magazine which I buy from time to time as I find it relaxing. The article I found was entitled Ask Dr Trisha – breast cancer – the latest. It says that improvements in survival from breast cancer are one of the success stories of modern medicine. It says older women in particular have gained from better detection by the national screening programme and more effective treatments. It says around 77% will survive 10 years or more compared to 40% in the 70s.
With all the money that has been poured into breast cancer research I thinks the percentage should be better than this and of course survival does not mean cure.
50,000 women are diagnosed with breast cancer in the UK every year and the article says the most important risk factor is age, because breast cancer is a disease caused by the genetic mutations that we get over time which leads to loss of control of cell growth.
The article further mentions the importance of screening and checking your own breasts.
It says to look out for changes in size or shape, a lump or thickening, puckering or redness, changes in the nipple, such as a rash or discharge or lumps in the armpit or around the collarbone.
The article goes on to list risk factors, which I remember hearing long ago, such as early onset of periods, late menopause, the contraceptive pill, HRT, obesity and lack of physical activity.
That is about all for today.
Fond thoughts.
Sylvia xxxx
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Hello bigleggy (Sandra)
I was wondering whether you got the results of your path report on October 2nd and whether you now have a date for chemotherapy.
Hello adagio
I hope you had good news from your check up on October 3rd.
Sending you both my best wishes.
Sylvia xxxx
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Hi Sylvia,
Just got back from oncologist - she said that all looks and feels good. She checked both breasts for lumps, plus the lymph nodes. Then she felt down my spine because she said that is a favourite place for breast cancer to settle. No blood tests, scans, MRI or anything like that. She said that the anniversary date is from the day the tumour is removed from the body - so I am one year from that, and what a year it has been - so grateful to have it behind me. I guess I should be happy, but feel very little emotion - still holding my breath- if you know what I mean? I go for my first mammogram later in the month - but seriously considering whether to or not?0 -
Hello adagio
I was glad to know you had good news from your check up with the oncologist and thank you for letting us know the exact details of the check up.
It looks as though your check up is much the same as we have here in the UK. It is just a physical check up.
It looks as though different oncologists date the anniversary differently. I was told to date it from diagnosis. It does not make much difference as some women have surgery straight-away and others of course have six months of chemotherapy before surgery, which was my case.
I think we all react differently to our good results. I know that I just feel a quiet sense of relief after a physical check up when I am told that all looks and feels good. I do feel pretty tense before the check up. According to my oncologist I shall see her in April 2014 and April 2015 and if all is clear after those two check ups I shall be discharged. June 20th 2015 will mark ten years since my diagnosis. Although I lead a normal life most of the time, life has never been quite the same since that diagnosis.
If you do have your mammogram, I hope all will be well, but I understand how you feel about mammograms and I feel much the same. I do worry about the exposure to radiation, the false positives and the fact that we are told mammograms are finding minute spots that may have never bothered women but because of finding them they are being put through all the treatment. I keep reading that mammograms do not save lives.
Have a good weekend out there in beautiful Vancouver.
Thinking of you.
Sylvia xxxx
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Hello everyone
I have been reading through some of the other threads as I do from time to time, and one new one in particular caught my eye. The thread is TN and chemo and is of course in the triple negative forum. It was started by latoya81 and I read her post with great interest as well as a post in reply to it by JaneB1. So much of what was said here made sense to me so I did send a post. There was another post on this thread by Caylianswife1 who is stage 4 TNBC and my heart went out to her. I am sure those posting on here would be interested to read these posts and the link to Heather's blog, which is very moving.
Keep well all of you and enjoy a good weekend.
Fond thoughts.
Sylvia
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Hello Debra
I was glad to know that all went well with your quarterly check up. You and adagio are good motivational women for others going through this cancer journey.
Keep up the good work.
Thinking of you.
Sylvia xxxx0 -
hi Sylvia
Hope your over your cold now.....did the echinacea and astragalus help? ive had quite a busy few days finishing off the photos and photo books for the weddings I've done in the last couple of weeks just one more to deliver now and I'm done
Not much changes round here in autumn and winter really.. It justs gets a bit quiter with everyone staying indoors a bit more....we have a garage right opposite which drives myself and my neighbours mad because of the noise, exhaust fumes and taking up all the parking spaces....well they have just been closed down because they didn't pay their rent and are currently clearing out their possessions.....happy days.....a much more peaceful next few weeks till the next new tenant moves in
I do agree the 10 year survival rate should be higher than 77% it makes you think where a lot of the money raised goes....whether it actually goes into research
I've been worried about having the taxotere because everyone seems to end up with some degree of neurophy but was reading the taking a slow release 100 mg vitamin b complex daily can actually help protect the peripheral nerves so I've ordered some, certainly won't do me any harm....have you read anything about this?
Take care
Jackpot0 -
Hi Jackpot,
A daily vitamin B complex during Taxol was part of my regime. I had no neuropathy so a couple of weeks after chemo I stopped the vitamins and within a week started developing some problems in my feet. I went back on the vitamins and seem to be fine. Take the B vitamin(s) for sure would be my take on this.0 -
hi susaninicking
Good to hear something I've read about confirmed by someone who has actually tried it some success will deffo be taking now during tax and for sometime afterwards...
Why don't the hospitals tell us about these things, I wouldn't have known about this if I didn't research everything, when you do mention something to your onc or gp they don't want to know, I nearly got thrown out my gps office the other day for mentioning iscador as part of my treatment
Thanks for the info
Take care
Jackpot0 -
oh by the way susaninicking when chemos done can i steal ur profile pic...please
Jackpot0 -
Jackpot steal away! I found tons of stuff on Google images and there are lots on my Facebook page. Friend me if you have a FB page (but message me and tell me you are Jackpot) and there are more jpegs you can help yourself to....I also did a weekly chemo countdown on FB during Taxol, so fun! Friends far away could celebrate one of the happiest days of my life, when chemo was OVER!
https://www.facebook.com/photo.php?fbid=10152265665414638&set=a.158189004637.148241.766059637&type=1&comment_id=13293662&offset=0&total_comments=4#!/susan.fleming.71460 -
I did the Munich Frauenlauf gegen Brustkrebs (Munich women's run against breast cancer) this morning with friends, so fun! Some of my pictures just will not upload and some are so blurry and pixelated once uploaded (they are fine on my computer) but ANYWAY I was there to represent us all in some small way and if you want to take a look at a few pictures, here's the link:
http://www.caringbridge.org/visit/susanfleming/photos
I'm the one with the shortest hair and no eyebrows in pink.
And we did our level best to stomp on breast cancer!!0 -
Jackpot, I guess I should probably support my hospital and women's oncology and tell you that the Vitamin B complex was prescribed by them as part of the medication during Taxol. I knew nothing about it but I think it works like a charm. I'm 5 weeks out from the end of chemo but probably will stay on it another month and then try stopping.0
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thanx Susan
Ive sent you a friend request and a message
I'm surprised they recommended vit b complex....I'm not on tax yet but those I've spoke to who are or who or who've finished definitely didn't get prescribed any and almost all have some degree of neuropthy ranging from pins and needles in hands to barely being able to get out of bed in the morning
It's shocking that something so simple as vit b could prevent this happening and were not told or prescribed it
Take care
Jackpot0 -
Susan am I right in thinking that iscador is also used in Germany as part of there cancer treatment? that's another thing I practically got through out my drs office for asking for
Jackpot0 -
I've never heard of Iscador. I was otherwise on the standard stuff I think, cortisone, nausea meds.0 -
HI ladies
Sorry I haven't posted recently, I was working away from home last week.
My appointment with the breast surgeon went well. The final pathology report has shown all clear margins on the tumour and no lymph node involvement so one very happy girl. I have to go back on Tuesday to see the oncologist and discuss a treatment plan. I have no idea at this stage what this will involve but I'll let you know as soon as I know.
Apologies for being so brief but I'm working away from home again this week (with the exception of Tuesday) and I'm still not packed!
I will sit down and catch up with all of your postings later in the week... :-) Take care... xxx
Sandra0 -
Hello Jackpot
Thank you for your post. I am fine now and I think the echinacea and astragalus helped me to knock out the cold. We cannot really ever tell what is helping us and what is not. I just know that when I take these two things I feel really energised. No doubt orthodox doctors would say it is all in my head, but these treatments have been around a long time.
I was glad to know you have been keeping with your photographs, because I know you really enjoy that.
It is a pity that the garage near you does not get replaced with something else, because those fumes are no good to anyone.
I think there are probably a lot of people around who wonder what is happening to all the money that is poured into cancer research. There are still too many people dying of cancer in general and breast cancer in particular. There really has to be a lot more effort put in to treating metastatic breast cancer. Someone on another thread was talking about it was high time that we had a vaccine to cure cancer, but I do wonder about this. There are hundreds of different cancers so I cannot see that one vaccine will do it. I really feel that the emphasis has to be on prevention and I think our industrialised western lifestyle has a lot to do with it. I think we are meant to live very simply, on basic foodstuffs, keeping active and living in harmony with nature. I think the supermarkets have a lot to answer in this respect and I also think orthodox medicine is doing a lot of harm. As far as cancer is concerned, we definitely need something less traumatic and toxic than surgery, chemotherapy, radiotherapy and other drugs.
I do not know much about the vitamin B complex and its benefit for neuropathy, but if you have read that it is beneficial you might as well try it. All I can say is that problems with my feet seemed to come on after I finished my treatment. my oncologist told me that it was definitely due to the docetaxel (Taxotere). A private podiatrist did tests on my feet and said I definitely had peripheral neuropathy. My GP also diagnosed it. All three said there was nothing to alleviate it or cure it and that it was permanent. They said it might recover in a hundred years!!! It is not that difficult to live with. I took a multivitamin all through my treatment which had the B complex in it and I have been taking an additional mega B complex on and off for quite a few years, because I read they were good for providing energy. I buy both lots of supplements in Holland and Barrett. If they seem to be working for you, keep on taking them. They seem to be working for susaninicking.
It is no use mentioning anything about healthy nutrition, vitamins and minerals etc., or alternative treatments, as medical doctors do not want to know and are not that knowledgeable about any of this. They seem to have been trained to identify symptoms and have corresponding pills to treat them. I just tend to inform myself, weigh up everything and then do what I think is right for me. I do not intend to take anything offered to me by my GP that I think is harmful and that is pretty much everything! As far as nutrition goes, I have more faith in Chris Woollams at Cancer Active.
You mentioned Iscador which is an immune booster made from mistletoe and I have read that it is used in cancer treatment in Germany, but that does not necessarily mean orthodox treatment in Germany. As I have said before, it is a homoeopathic treatment and I took it as prescribed by a well known consultant at the Bristol Homoeopathic Hospital. I took it throughout my treatment and for sometime afterwards, and then had a break before going back to it. After another break and after the consultant at Bristol thought I could be discharged, I tried to go back on it through my GP and primary care trust, only to be told that they were not funding homoeopathic medicine. You must have read about how homoeopathy is always being mocked by the orthodox establishment. I have no real proof of what it did for me, except that I went through all my orthodox treatment with no real problems and no setbacks. I took prescribed homoeopathic medication every step of the way. You can get Iscador online I believe.
You are probably wasting your breath talking about any of this to your GP or any other medical person.
Thinking of you and wishing you well.
Sylvia xxxx0 -
Hello Susan,
Congratulations on doing the women's run against breast cancer. I shall have a look at the pictures tomorrow.
It sounds as though the doctors in Germany are more enlightened than here. I do hear and read good things about cancer treatment in Germany. I am ashamed to say that the UK does not get a good write up when it comes to cancer treatment and everything I read seems to say that we need to pull our socks up. We also need to broaden our horizons. The mentality here is always looking to the past and not to the future. We are too steeped in class and snobbery. We need to modernise.
I shall be thinking of you on Thursday October 10th as you begin radiotherapy and shall be very interested to see what goes on and how it compares to radiotherapy in the UK.
Keep posting and tell us more about life in Germany and especially about the health care system. What is the education system like? Here in the UK there are lots of problems.
Wishing you well.
Sylvia xxxx0 -
Hello big_leggy (Sandra)
It was nice to hear from you and thank you for your post. I was so glad to know that your final pathology report showed all clear margins and that you have no lymph node involvement.
I shall be thinking of you tomorrow, Tuesday October 8th, when you see your oncologist to discuss chemotherapy treatment. we shall all be interested to know what drugs are prescribed.
Wishing you well. Take care.
Sylvia xxxx0 -
Good morning Sylvia and all,
Liz had her ovaries removed this morning. She went into surgery at 8.15am. I received a phone call from the surgeon at 8.55am to say all had gone well and nothing was found. Very quick indeed and very surprised when the surgeon phoned, thought it was something bad at first as never expected him to ring.
Peter0 -
Hello peterandliz,
Thank you for your post to let us know that Liz has had her surgery to remove her ovaries and that all has gone well. I know I speak for all of us on this thread when I say we are thinking of her and wishing her a speedy recovery. We hope this surgery will bring her the peace of mind that she wanted.
I thought it was a nice gesture of the surgeon to phone you to let you know that all was fine. I do not think you get much of that in hospital today and it must have been nice to have a surgeon with some feeling for the anxiety that family and friends experience over their loved ones.
Take care of yourself and let us know how Liz progresses.
Thinking of you and sending fond thoughts your way.
Sylvia0 -
Hello big_leggy (Sandra)
Just popping in to say I hope all went well today with your oncologist and that you now know when you will start treatment and what drugs you will have.
Sending you best wishes.
Sylvia xxxx0 -
Hello sam52 and linali (Lindsay)
We have not heard from either of you for a while and I just hope all is well with both of you.
Thinking of you.
Sylvia xxxx0
