Calling all triple negative breast cancer patients in the UK
Comments
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hi Sylvia
I got my letter today for my surgery and it's next Wednesday with my pre-op on Friday, they certainly havnt wasted no time getting my appt out, I also got a letter explaining my recent tests and results but it included all my previous history and diagnosis and I noticed it said 2/13 nodes were involved all my other letters say 1/13, I know it probably doesn't make any difference but I was just wondering were they got the other positive node from
My nephew is doing well after surgery on his head and back, he's going to be ok he's just going to have a long road back to good health and currently has to wear a back brace, my Neice Emma has just had good scan results and is doing well, fingers crossed this time the aggressive treatment they gave her has worked,
Linali....good luck with the mammo results it's always a scary time waiting for results, did they say how long you would have to wait for?
Marymargeret....how's child number three doing are they still infectious, it must be hard dealing with young kids along with everything else...
I too like Sylvia drink green tea and eat apricot kernals but unlike Sylvia I can't honestly say I like the taste of either and take them purely for the health benefits of them, I read your post about morphine causing cancer cells to grow and to ask for tramadol, unfortunately I can't take tramadol as it makes me really sick, but I'll ask if there are any other alternatives for pain relief
Take care
Gill
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jackpot - that's great that you are having the surgery so soon. I will be thinking of you next week as you prepare yourself for that. Glad that your nephew is doing well, and also that your niece's treatment is working for her. My daughter who is getting married in 10 days time had to have major surgery on a broken and displaced collarbone, so she will be walking down the aisle in a sling and a great big scar on her shoulder! The timing couldn't be any worse for her - she is still in a lot of pain and is on heavy pain medication - oxycodon (highly addictive) so she wants to get off that as soon as she possibly can. She also has tramadol and takes extra strength Tylenol in between the 4 hour schedule. I took her for her dress fitting yesterday and it is going to be a challenge for her on the day - her bridesmaids are going to be working hard! I had never heard about morphine causing cancer cells to grow - that is generally the pain med that's used in palliative care, isn't it? I wonder if the doctors have heard about this side effect of morphine. Let us know how everything goes for you. Take care.
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Just a few pics now that I have worked out how to do it! Will write more tomorrow.
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marymargaret - what a beautiful family you have!!! You have a lot to live for with all those precious children. So glad that the baby is doing so well. Talk great care of yourself.
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Hello Gill
I was glad to know that you have your appointment set for next Wednesday and I do hope all will go well. It is strange that your report now states that you had two positive nodes when before you understood it was one. Just to set the record straight, if that were me I would ask for an explanation so that you know whether it was one or two. They do make mistakes on records.
I was also glad to know that your nephew is going to be alright, although I realise he has a lot to go through before he has completely recovered.
It is great news about your niece and I do hope she will now be able to get back to some normal kind of life.
What is it about green tea and bitter apricot kernels that you do not like? Is it the bitterness? There is a big difference in taste between Clipper's leaf green tea, Clipper's green tea in tea bags and Clipper's decaffeinated green tea. I have the leaf tea in the morning but always eat something before I have it, and then for the rest of the day I have the decaffeinated green tea. My preference would be for the leaf tea but I cannot take the caffeine. Because I have osteoporosis I have been advised to steer clear of caffeine because it affects the bones. I do not know whether this is true. There is so much advice and information flying around that in the end it is hard to know what to believe.
As for the bitter apricot kernels, it is true that I really like them and it is the bitterness that I like. I have seen sweet apricot kernels on sale in some natural food shops, but it is the bitter ones that are supposed to help against breast cancer.
What are you doing for the rest of the summer holiday? I think the schools must go back on about September 2nd so that is not far away.
By the way, I did read sometime ago about morphine for surgery and how it can spread cancer. Again, it is hard to know what to believe.
Wishing you all the best.
Fond thoughts.
Sylvia xxxx
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Hello adagio
I just wanted to say how sorry I was to read about all that your daughter is going through just ten days before her wedding. I do hope that all will go well on the day and also that your daughter will soon be able to get off painkillers.
I have just been discovering some interesting information in the latest British Medical Association book that I have.
As you know, I have peripheral neuropathy from the Taxotere that I had. It does not seem to get any better and I have been told there is no cure. This year I started having a little pain in the big toe joint on my left foot and I went to see a podiatrist. She looked at the toe and said it was osteoarthritis. I have just been putting some pain relief gel on it when it bothers me. I looked up osteoarthritis in my medical book and was reading how closely associated osteoarthritis and gout are. I was surprised to read that gout may be caused by excess cell destruction associated with chemotherapy. Apparently you need a blood test to show levels of uric acid which is a diagnosis of gout. I am thinking of getting this so that I know whether I have osteoarthritis or gout.
Reading about gout, I discovered there is a condition called pseudo-gout which is often associated with osteoarthritis.
In addition, I also read that pseudo-gout may be linked to hyperparathyroidism (an over active parathyroid gland). As I have said before, I was diagnosed with hyperparathyroidism at the same time as breast cancer and was cured of it through surgery. At the time there was research about a connection between hyperparathyroidism and the development of breast cancer. I discussed all this with my breast cancer surgeon who was also my endocrinologist. She said the hyperparathyroidism had been there for quite a time undiagnosed and that it had definitely preceded the breast cancer.
I have been trying to link this all up. Have you any comments?
Fond thoughts.
Sylvia xxxx
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Hello marymargaret
It was lovely to look at the beautiful photograph of baby Evie. She looks really well. You have a lovely family and I am sure that it is your greatest motivation to getting through this chemotherapy journey.
Can you bring us up to date with how you are getting on? I think you must be half way through by now.
Keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hello marymargaret
I have just looked at your details in your profile and seen that you have just posted your kind of cancer and receptor status so I am not sure where you are with your treatment except I remember you had your baby during chemo. What is happening to you now?
Best wishes
Sylvia xxxx
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Thank you Adaigo, I am very thankful for all that I have and my little pearls are getting me through this.
Sylvia, I had chemo number three last friday and that has hit hard I have to say, so tired and dizzy. We are in a fortunate position that we can afford for hubby John, who is self-employed, to stay off work until Christmas, so a massive help around the house. I have lots of family support on both sides, support from friends and Church, I know that there are lots of people who don't have anyone to help them.
I was diagnosed at 31 weeks, had baby out at 32 weeks and started chemo two weeks later. I am due to have 6 to 8 sessions of FEC, which will take me up to October roughly and then a bilateral mast (my own choice to have the other one off and probably the ovaries too) followed by radiotherapy. Roughly half way through and I have seem some shrinkage, when did you start to see a significant reduction? I don't know the stage yet or exactly how many nodes are affected, there is definitely one node at 9mm and some showing as trace. I will know more when I have em' orf!
The apricot kernel subject! I really don't like the taste but all the reading I have been doing proves that it is very positive! So, I tried chewing them and drinking lots of water, but found that yack. I ground them up in a blender and put them on my Special K, that proved yack too. Finally, today, I just ate the ground kernels and washed them down with water. Much better to have them ground so its just 'knock it back!' I am taking 25 kernels and when ground its about a full tablespoon or 3/8 oz.
The green tea is OK for me, but I am cheating and having it with half a spoon of organic brown sugar ......
Gill, child number 3, Jacob didn't have c pox after all! It was such a stress that weekend, one of my sisters took him for a couple of days until I could speak to my own onco and when I did, he told me I would of been OK anyway.I think he must have been ravaged by some red ants in our garden, that's all we can think it may have been. Good luck for Wednesday and rest, rest , rest.
We are all going to Centre Parcs in Nottingham next monday for five days so as you can imagine the children are so excited. Whilist I can't go in the pool, I will enjoy watching them have fun. The rest of the summer holidays will be taken up with various day trips, there is a list!
Thinking of everyone on here, including you in my prayers to St Agatha (patron saint of women with BC).
Have a lovely weekend,
Mary
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Hello Marymargarethope
It was good to hear from you. I was sorry to read that you are suffering after your third chemo but it is not unusual for side effects to build up as you go through the chemotherapy treatment. Just keep resting as much as you can and take whatever helps to counteract the side effects. If you are feeling dizzy you might be having low blood pressure and you can bring this up by keeping well hydrated. You must remember to drink lots and lots of water, especially in those first few days after treatment but keep drinking water throughout your treatment. I used to take my blood pressure every day during treatment and usually in the morning. I found having a shower and washing my scalp each morning could make me feel a bit tired and weak and I used to sit quietly after doing this and sip water.
I was so glad to read that your husband, John, is able to be at home until Christmas and able to help. You do need help through cancer treatment and I know that I could not have got through it without the help of my husband, Raymond. We do not have any children so I can imagine how difficult and challenging it must be to get through this with four children and one of them a new baby.
Try to focus on the fact that you now have three chemotherapy treatments behind you and that if you have six of FEC you are now halfway and keep looking forward.
I would not worry about how much shrinkage of the tumour you have. Mine was very gradual and I do not think there was any particular time when it started to shrink more than at another time. Remember that the chemo is systemic and will be working throughout your body.
I was wondering what has made you decide to have both breasts off (bilateral mastectomy). I get the impression that a lot of women are doing this and there is a lot of publicity about the wisdom of this and removal of the ovaries. Have you had genetic testing and have you tested positive for the BRCA1 or BRCA2 genes? I ask this because I have just been reading the August edition of the magazine What Doctors Don't Tell You and I saw a short article on page 14 entitled "Women opting for unnecessary breast removal surgery". It says "Women diagnosed with breast cancer are choosing to have a double mastectomy (removal of both breasts) even though it does not increase their chances of survival. In fact, up to 70 per cent of double mastectomies may be unnecessary, a new study has found."
It goes on to say that women are being offered these mastectomies, even though they do not have the genetic risk factors such as BRCA1 or BRCA2.
This information is being quoted by researchers from the University of Michigan who say that this surgery is traumatic and disfiguring and unnecessary.
The article goes on to say there is no evidence that a tumour in one breast will spread to the other. It also says that it is more likely that a tumour will recur in the same breast.
You might like to get the magazine, as it is full of useful information.
I am going to end this post and start another one in case I lose it.
Fond thoughts.
Sylvia xxxx
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Hello again Marymargarethope
I was interested in what you had to say about the bitter apricot kernels. There is nothing wrong with grinding them up but if that were me I would spread the consumption during the day. I chew five at a time and usually three to four times a day. I do grind up seeds, such as linseeds, sesame seeds, sunflower seeds and pumpkin seeds and use them as a base when I have bowl of natural soya yoghurt that has live cultures in it. I often top is all off with some sliced organic banana. One day I have ground linseeds and sesame seeds together and another day I have ground sunflower seeds and pumpkin seeds together.
Remember to be careful about sugar in the diet. We all know that any kind of sugar is very bad for us and that cancer cells love sugar. BY putting sugar in your green tea you may be negating the benefits of it.
I was so glad to know that your child number 3 did not have chickenpox. It is one less thing about which you have to worry.
I hope you all have a good day out at Centre Parcs.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Just catching up as I have no results yet from the mammo. My appointment at the breast clinic is the 21st of August.
We have booked our flights and 2 hotels for our trip to Washington and the Carolinas. It is difficult to find reasonable hotels with parking in Charleston and Savannah and we have opted to stay outside Charleston. Today we will trawl through the Savannah options.
Yesterday one of the women at the centre completed one thing on her " bucket list". She had a spin on a Harley Davidson. The incredible man who is organising the Harley Fest in memory of his wife drove her out. He has a fabulous red metallic bike with a beautiful portrait of his wife on the back. Four bikes came but only one with a double seat and so the rest of us will have to wait until the Fest to have a spin on a Harley. Marie his wife only died in early summer and the fest will raise money for her charity. Some will come to the centre. What a brave and lovely guy!
I haven't found out exactly what the bio-energy practitioner does but will ask today.
Kurt and Oskar are coming for a flying visit on Thursday and then my sister Gill will come from England on the 18th. Oskar will come the following weekend and Kerry and Kurt will come down on the 28th for a friends' wedding and then take Oskar home. We haven't seen him for a few weeks but he is getting more boisterous each day! Now when we Skype he barely has time to keep still for a couple of minutes.
Last weekend was Cork Pride and I traveled down to meet Leigh and her friends( getting more used to the female pronouns).Very interesting and talented characters and more importantly very supportive and tolerant of Leigh and her strong and vocal opinions.
Hope that everyone in treatment is doing OK
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Hello linali (Lindsay)
It was nice to hear from you and to have all your news. You must be very busy.
I do hope that you will have a lovely time during your holiday to the USA.
I was interested to read about the woman who went on the Harley-Davidson bike. I do admire her but it is not something that I could do. Are you going to have a go? What a unique way of raising funds.
It sounds as though August is going to be a busy month for you with all those family visits. I know how much you enjoy them.
I was glad that all appears to be going well with Leigh.
When do you fly out to the USA?
Here in Exmouth we are getting cooler temperatures and that makes me feel much better. Today we have been getting some well needed rain and the grass is beginning to turn green again. There is already a feeling of autumn. Yesterday Raymond and I went on a drive to Tiverton which is about 24 miles from Exmouth. It was good to get away from busy Exmouth which is full of tourists. Tiverton is a quiet little town and not on the sea. The silence there was lovely and it was a nice rest from the screeching of the seagulls!
That is about all for now. Let us know how you get on when you go to the hospital on the 21st.
Wishing you well.
Sylvia xxxx
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Hello everyone
I was just looking back on the posts and noticed that we have not heard from Jacqueline in Scotland for a while. If you are still viewing, please let us know how you are getting on as you go through chemo.
The same goes for Clementine. I do hope all is going well as you go through chemo and that you were able to solve the problems you were having with sore mouth and ulcers.
To Jackpot (Gill), I am thinking of you and hope all goes well tomorrow when you have surgery for that lump. Let us know how you get on.
To Maryna8, how are you feeling now that you have finished chemo? I hope you are getting your strength back.
To Marymargarethope, I hope you are not feeling too bad and are able to make the most of the summer with your husband and four children, even though you are going through chemotherapy.
To Carolben, we have not heard from you in a while and hope all is well and that you continue to remain stable.
To Normandee (Norma), Michael, Susaninicking (Susan), adagio in Canada, I hope you are all enjoying the summer holidays and that you will pop in to catch up when you can. To adagio, I hope things are not getting too hectic with the wedding preparations.
Many thanks to all of you who post and view.
Fond thoughts.
Sylvia xxxx
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Hello Gill
I hope all went well for you yesterday and that you are feeling alright. I am thinking of you and wishing you well.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia/Ladies,
Sorry I have not posted in a while but after 2nd FEC was very tired. Also we have all been watching the Commonwealth Games being held in Glasgow and thoroughly enjoying the whole experience. The weather here turned a bit cold last week and I started to feel chilly with sneezing and a runny nose so I stayed in and rested. I am due my next FEC session tomorrow so I am half way through.
After 1st FEC I noticed my breast was not as swollen but a a bit disappointed that after 2nd session I did not seem to see any difference. Sylvia - read your post about your tumor reducing gradually so calmed down a bit. I also read that caffeine is not good for your bones and I am also struggling with eliminating sugar from my diet. When making the green tea I have to find the right strength - how long you leave the T bag in!! I must look out for the de-caffinated green tea. I also take linseed - I sprinkle it over my Weetabix with blueberries and that works for me.
I asked the onc today if she could tell me where my tumor was. She could not tell with the pathology report - it was not stated, only that I had Inflammatory BC and it was triple negagive. I am scheduled for a mammogram 21st August so maybe the results will tell then.
Marymargarethope - your family photos are lovely and glad all is well with the family, especially the news that hubby will be off work to help you through your treatment - it cannot be easy with four kids - hope you have a good time at Centre Parcs.
Ladies - hope you are all doing fine and staying positive.
Jacqueline
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Hello everyone,
I thought you would like to see the baby robin that has been keeping me company as I did some work in the grounds of our apartment complex today. It stayed with me for several hours and was very tame. I did not know it was a robin until I asked some neighbours. Babies do not have a red breast apparently. The neighbours said it has been separated from its parents but they will find it.
Best wishes.
Sylvia
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Hello Jacqueline
It was so nice to hear from you. I shall be replying tomorrow because today has just vanished and I like to be very careful when I post.
Fond thoughts
Sylvia xxxx
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Hello Jacqueline,
I do hope everything went well yesterday for your third dose of chemotherapy. Remember to drink plenty of fluids and get plenty of rest. Keep looking forward and remember that you can get through this.
You need to concentrate on getting through all of your chemotherapy and see what everything is like at the end. You still have quite a lot of chemotherapy sessions to go through. The drugs will take time to have an effect.
It is true, so we are told, that caffeine is not good for the bones. My understanding is that it drains calcium out of the bones. Fizzy drinks also have the same effect. I have osteoporosis which was partly due to an undiagnosed overactive parathyroid gland (which pumped calcium out of the bones into the blood) that put out too much parathyroid hormone. I suspect that cancer treatment also affected the bones. I avoid caffeine except for one mug of green leaf tea in the morning with my breakfast. The rest of the time it is strictly decaffeinated green tea. I am waiting for a delivery of decaffeinated green leaf tea, Sencha tea, which is an excellent type of green tea. I have read that animal products have a negative effect on bones as well.
I like my green tea strong so I let it brew for about five minutes, but just brew it to suit your taste. I think the Clipper brand is probably the best decaffeinated green tea to buy and I buy it in Tesco. The pure green leaf I buy in Holland and Barratt.
It sounds as though you have a healthy breakfast so that is a good thing. I always have a bowl of fruit in the morning and have a mixture of blueberries, raspberries, strawberries, blackberries and red or black grapes.
Just keep trying with the sugar and do not worry if you cannot eliminate it completely. I have actually almost eliminated sugar from my diet except for the occasional bar of 85/90% dark chocolate. I am lucky in that I do not have a sweet tooth so have no desire for sugary things. I have now discovered that 100% dark chocolate is available on line at a reasonable price so I shall probably try some of that. The only shop selling it here, and that is in Exeter, is Hotel Chocolat, but it is very expensive.
I hope all will go well on August 21st when you have a mammogram.
Keep well and enjoy the rest of the summer. It must feel strange in Scotland now with the Commonwealth Games over.
How do you feel about the fast approaching referendum on Scottish independence?
Fond thoughts.
Sylvia xxxx
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hi Sylvia
Just to let you know I'm doing ok, op was quite straight forward and took about two hours and my surgeon managed to go through last years scars so no new ones and she's done a really good job....it's not been too painful and I've managed to get out and about a bit so hopefully it's all over now for me except for check ups so that's good
Love the pic of the little baby robin did the parents find it ok, I do love robins there one of my favourite birds as well as blue tits, I hand raised a newly hatched blue tit a couple of years ago who never wanted to be released he used to fly outside then come back in to eat and sleep and he stayed till he died, he was the most comical bird I ever saw and used to torment everyone who came in, I still miss him...his name was jackpot that's why I use it as my name on here
Take care
Gill
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Hello Jackpot (Gill)
It was nice to hear from you and to know that everything went smoothly and that all is fine. That was quite a long surgery of two hours but at least you know that it was thorough. I was glad to know that you are not in too much pain and have been doing some normal things.
I was glad that you liked the photograph of the baby robin. I have not seen it since Friday so I just hope that its parents found it. I too like robins. They seem to be birds that like company and are very tame. I usually have a robin coming to keep me company whenever I am doing work in the grounds. They always seem to be alone so I do not know whether I keep getting the same robin.
I was most interested in what you said about the blue tit that you adopted.
What are your plans now? Are you on holiday or are you back to work? How is the family?
I think of you whenever I see John Bishop on the television. He had a programme recently about going back to Australia. He is such a charismatic person. I saw that Karl Pilkington in the Moaning of Life was on one of the Sky channels and we do not have Sky, so I am hoping it will go onto Pick. There is such awful news in the world everyday so I feel the need of something to make me laugh.
Did Lulu make a complete recovery from her brain surgery? I am always interested to know what is going on in other breast cancer support groups.
I was amazed on Friday when I saw a photograph of a huge yew tree hedge being pruned. As I read the article it was all about gathering all this up to be shipped out somewhere to be made into the chemotherapy drug docetaxel (Taxotere). It was good to see it described as a life-saving chemotherapy drug. The article was in the ipaper on Friday August 8th. The link is
The article was also in the sister paper The Independent. They are my favourite newspapers but I do miss the columns by Owen Jones and Yasmin Alibi Brown. They both write very well. I do not know whether they have gone freelance. One of the best books I have ever read, a non-fiction one, was The Demonisation of the Working Class by Owen Jones.
That is about all. I am going to post the photograph of the hedge now as the one online is different.
Take care and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello everyone
I thought you would all be interested to see this photograph (published in the Friday edition of the ipaper last Friday) of a huge yew tree hedge that is being pruned and the prunings gathered to be turned into the chemotherapy drug docetaxel (Taxotere) that so many of us have had.
I knew that the drug was made from the yew tree and have read in the past that the docetaxel was made from yew trees in Europe and that paclitaxel (Taxol) was made from yew trees in North America.
I do hope that we shall hear from our faithful posters more frequently as the summer holidays come to a close. Here in Exmouth, we have been getting a storm that has brought well needed rain.
Best wishes to everybody.
Sylvia
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Hello everyone again
I was just wondering those of you in the UK think about all the news we have been getting this week about the new and expensive drug Kadcycla that costs £90,000 and is being used for advanced breast cancer in those patients that are HER2+. We do have to think of patients with breast cancers other than triple negative and we do know that triple positive is very aggressive. I am not sure how much treatment the £90,000 covers but it has been reported that it extends life for six months. How they can be so sure about the six months I do not know. It could be that it could extend it for longer. Once again, NICE will not approve it on grounds of cost and the drug company, Roche, will not reduce the price. I feel strongly that once again we have a situation where only those who can pay will benefit. I did listen to an interview with a woman who was getting it at the Royal Marsden in London, probably through a trial. She is only in her forties and has two young children.
Does anyone have any comments about this?
Hoping to hear from some of you.
Best wishes.
Sylvia
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Hello everyone
Just popping in to wish you all a good week and to say I am thinking of those going through chemotherapy and/or radiotherapy. I know that some of you have also got mammograms coming up in August and so I hope all goes well. Please let us know how you get on.
Best wishes.
Sylvia xxxx
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hi Sylvia
My surgery lasted 2 hours because I had a three in one....I had a lump removed from my breast a benign lump removed from my back and a seroma drained, I was on another waiting list to get the lump of my back removed but I still hadn't even received a date to have it done, so I asked my surgeon on the morning of my op whether she could do it for me at the same time and she was happy to as long as it was added to the consent form, so I'm glad it was all done at the same time, I was pretty much pain free after my op till yesterday when I woke up with really bad armpit pain, not sure why as no surgery was in that area so I've been doing some stretches to see if it eases it, but no luck yet .
I'm going back to work on Monday on light duties till the third week in September then I've got three weeks off and I'm off to Cyprus for twelve days with my friend, really looking forward to that!!!!
I watched the John Bishop Australia programme and really enjoyed them and one of his stand up shows was on the TV the other night called "elvis has left the building" I've also got tickets to go and see him on the 18th dec at the echo arena as a Xmas present of my sister, have you still not seen all the moaning of life episodes? Did you see all the idiot abroads? I watch them whenever they're on because they're well worth a second look and always make me laugh, I don't think he realises how funny he is,
Lulu is doing ok she's been out and about with friends and posting on certain Facebook groups she's one of the bravest lady's I know, she post photos and always has the biggest smile on her face no matter what she's facing, another lady on the triple neg group has now been diagnosed with three brain tumours, reading these posts always knocks me back and I wonder sometimes if I'm doing the right thing staying on the group as there seems to be so many ladies being diagnosed with mets lately and it makes it real just how scary this disease is.
The photo you posted of the Huge yew tree hedge was lovely I didn't realise they grew so big, strange how something so elegant can be turned into something so poisonous
I saw the interview with the lady who was kadcycla I don't know if it was the same interview you saw it was on one of the morning programmes, she had to fight to get it but I'm sure she had been on it for longer than six months, why do they always price it so high that it becomes unavailable to us, imagine if that had been something for advanced triple negative breast cancer and patients were denied it because of the cost.....it all comes down to greed with these big drug companies, it makes you wonder when they finally come up with something for TNBC will it even be available to us
Take care
Gill
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Hello Gill
Thank you for your post and for your explanation about why the surgery took the time it did. At least it is all behind you now.
I was sorry to read that you have pain under the arm and I hope it will disappear soon. Stretching exercises I would think are a good idea. I suppose it could be a bit of lymphedema. If it does not go I would get it checked out for peace of mind.
I hope all goes well at work on Monday and that you will soon get back into the routine. You have that holiday in Cyprus to look forward to.
I have not seen any of the Moaning of Life as it is on Sky which I do not have. I keep looking out for it on the other channels.
You also have something to look forward to in December when you go to see John Bishop.
I was glad to know that Lulu is doing fine. She sounds like an amazing person.
I know how you feel about getting knocked back when you read about women getting recurrence or metastases. It is frightening and it also affects me but we have to remember that more women are going through treatment and on to normal lives than are getting recurrence or metastases. I know it may not seem like that when you are in a group when a lot of people seem to be getting recurrence or metastases. We can only do our best, or what we think is best, to keep a check on ourselves and eat healthily, exercise and keep our environment as clean as we can. If you feel that being part of any group that is having a negative effect on you it is best to leave.
I think we probably saw or listened to the same interview with the woman and the kadcycla drug. I cannot see the point of producing drugs that are too expensive for everyone to have. I hate anything to do with health treatment that is based on the ability to pay. I do think that NICE is a problematic organisation that ought to be abolished. We managed for a long time without it.
This morning on Radio 4 I heard another news item about a drug for prostate cancer that NICE is once again refusing to make available on the NHS, even though it is widely used elsewhere. The drug is called abiraterone and is being used for advanced prostate cancer to extend life, but NICE is refusing to allow it for prostate cancer in general, even though it could be used in older men to replace chemotherapy which older people cannot usually take, with all its side effects. This drug costs £3,000 a month and is being refused, so what chance is there of getting kadcycla at £90,000 a year?
As you cay, if the drug companies come up with a drug to prevent breast cancers with triple negative receptors or to treat them in a less lethal way, will NICE be telling us we cannot have it because it is not cost effective?
It is Friday again, so I hope you have an enjoyable and relaxing weekend.
Fond thoughts.
Sylvia xxxx
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Hello naturegirl11
Thank you for your PM. It was good to hear from you.
I am posting on the thread because I think it is so important to share good news with everybody, as it helps to motivate others going through treatment and especially those having a difficult time.
Congratulations on having gone through chemotherapy and surgery successfully and having a complete pathological response. You are nearly there. You just have to complete the journey with radiotherapy. How many weeks will you be having of radiotherapy?
Most women that post seem to think that radiotherapy is the easier part, especially after the long months going through chemotherapy. Have you had your appointment where you are put on a prototype of the radiotherapy machine and where you get mapped out on your body to outline where the radiation beams will focus?
I would say that you still need to get plenty of rest as you do tire during radiotherapy, especially as the sessions increase. Of course it is tiring to have to go to the hospital everyday for five days a week but the treatment itself does not last long. It is only a minute or two. It is usually Monday to Friday with a rest at the weekend.
I was told at my appointment when I had the prototype/simulator that you have to be careful with your skin. I was told not to use Dove soap during the treatment as it contains metal. The same goes for talcum powder, which I do not use anyway. I washed in aqueous cream throughout the treatment and did not have any problems with my skin.
I should mention that I had external beam radiotherapy so that nothing touches the skin. I think this is what most people have, but there is something called internal radiotherapy.
Everything should be explained to you when you go for your first visit to the radiotherapy department for what is termed the treatment planning visit for your radiotherapy.
I had three weeks of radiotherapy with boosters and the boosters were given at the same time as the ordinary treatment. Radiotherapy treatment usually lasts from three to six weeks.
I hope this helps and we would all be more than glad to have you posting on the thread as you go through treatment. this way we can all learn from your experience and we can help and support you.
Wishing you all the very best and sending fond thoughts.
Sylvia xxxx
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Hello everyone
It has been a very quiet week on the thread but I imagine that all of you who have finished treatment are on holiday or al least enjoying the last weeks of summer. Here in Exmouth there is already an autumnal feel to everything. The days are drawing in.
Fond hellos to Norma, Lindsay, Michael, Susan, Adagio, Gill, Maryna8, and any others who have finished treatment but stay here to support others.
A special hello to Carolben in South Africa. We have not heard from you so I do hope you are still stable.
To Marymargarethope and Jacqueline, I do hope you are bearing up as you go through chemotherapy.
Hello to Clementine123. We would love to hear from you and know how you are.
Wishing everyone a good weekend.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Just catching up on the posts. I too saw the interview with the lady who is receving treatment with Kadcycla and there was also another drug for prostrate cancer refused this week. Of course there is a shortage of funds in the NHS but to restrict the use of these drugs strictly on a cost/benefit basis is short sighted as these drugs advance our overall insight to cancer and also if they do not get used we will end up where we are with antibiotics with the drug companies simply not researching anymore.
I also think that there are too many "lifestyle" treatments being done, such as gastric band surgery. Unless the person is suffering some physical condition that causes obesity then the operations should not be offered. I know that is a controversial area to stray into but I think so many things are being done now that were not even considered when the NHS was founded.
Anyway that is enough rattling cages for one weekend 😊
Michael
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Hello Michael
It was nice to hear from you and I do hope you have had a good summer.
I was glad to know you are keeping up with the information about what is going on with cancer treatment in this country. I too read all about the prostate cancer drug that is being refused by NICE on the grounds of cost and I do not think it is fair or ethical. I was already feeling angry about the Kadcycla so to hear and read about yet another cancer drug being refused really upset me.
I am wondering whether the special cancer fund set up by the government is perhaps doing more harm than good and making the pharmaceuticals stand out for the exorbitant prices they are asking. We need more money for cancer treatment as so many more people are being diagnosed so it seems. I am concerned and surprised about the number of people just in my apartment complex have had cancer and died and have had cancer but are still surviving and those being newly diagnosed. I do think lifestyle (junk and processed foods) and lack of exercise play a part but on the whole is the general environment of the western world. I have been very impressed with the book I read and still dip into entitled Beat Cancer. I believe in its ten step plan to help you overcome and prevent cancer. I have posted quite a bit on step 5, Eat to Beat Cancer, step 6, Protect Yourself with Exercise, and I have yet to post on the other steps. I have been reading about step 7, Beware of your Environment. It is quite a big and detailed section, pages 167 to 192. This step points out the most significant cancer causing substances in the environment. One of the worst things is plastic and it advises to limit the amount of plastic in your home and avoid plastic storage boxes and food wrappings. It also states to use natural, unperfumed, personal-care products. I always try to buy everything unperfumed, as I do not like perfumed products anyway.
This past week I was reading about how hospitals do to have to state the amount of radiation that is being used in scans and how it is thought that the scans are causing cancer. In the book it states that if you are offered a CT scan or any other scan you should ask your doctor if it is really necessary and if there is an alternative. I was glad that during my treatment I just had two scans before treatment began and two after it finished. I know from this forum that patients in the States get lots of scans. I am also wary about mammograms. The powers that be seem to use CT scans without the blink of an eye!
I do agree with you about 'lifestyle' treatments. I agree with you about gastric bands but I know that is a controversial subject. I think if people are overweight due to overeating they should have the will power to cut down. There is the problem however of medication for certain ailments making you put on weight, drugs such as steroids.
That is about all for today.
Wishing you well.
Sylvia
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