Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio
It is always a pleasure to hear from you. For me the positive of being triple negative is that after finishing treatment I did not have to go on any drugs with nasty side effects, such as tamoxifen, aromatase inhibitors such as Arimidex or Herceptin. I have been free to let my immune system build up after treatment and fight for me, without being further compromised by drugs. I concentrate on the many possible risk factors for breast cancer and try to do something about those that are in my control, the main ones being food and drink, keeping active and keeping as many chemicals as I can out of my life, not to mention trying to avoid negative stress, which I think contributed to my own cancer.
I think you are right to forget about cancer and enjoy that holiday to which you must have been looking forward for a long time. Enjoy every day and get as much relaxation as you can. I am sure you will be fine with your nutrition. At least you are doing some self catering so that will help. I agree eating out is a challenge, but just go for simple meals and let yourself have a few treats.
We shall all be thinking of you and waiting to hear all your travel experiences. If I remember rightly, you are going to South Africa and the UK. Enjoy!
Fond thoughts are coming your way and best wishes for Labour Day.
Sylvia xxxx
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Hi all,
I have a bit more time today to type a bit. I'm one day post last chemo and loving the thought of free Fridays! I've been so lucky with Taxol and very few SE's. Tiredness, a little GI trouble here and there and that's been it. I think I might have scraped by without nail and neuropathy problems which I attribute to ice and more ice during the infusions.
So my week turned out to be way more stressful than expected. Had a mammogram on Monday just to make sure all was clear before I start radiation. My hospital would not have routinely done this but a breast surgeon friend of my cousin's suggested it, my doctor here said sure, and off I went feeling confident. They found something near the site of one of my tumor removals which sent me next for an MRI. What they saw on Monday in the mammo was nothing but in the MRI they found something else, 8mm of mystery spot. Unknown what it is. Hopefully nothing. They have decided to put in a clip next week with an MRI again, and then after radiation which starts the following week, the hope is that whatever it is will be gone. If not, I guess it will be another surgery to take whatever it is out. It was a little bit sad not to be able to experience the fireworks I had in mind at the end of my chemo, but in general I managed to not let all of this wreck the day totally. I cried a bit and went on up to chemo and got the job done. My chemo doctor gyno/oncologist said absolutely to not spend the next 2 months worried about this, that the chance of there actually being a tumor is seriously remote after the chemo. She said if her breasts were MRI'd there would probably be something there, such is the sensitivity of the MRI.
So next week, another blood draw for the MRI, another blood draw for chemo aftermath, needles for the MRI itself (contrast and clip insertion), needles for CT scan contrast, etc. etc. etc.....I have become a real big hater of needles. You name the procedure and I start counting needles. Who else among us feels like a pin cushion? And I hate it when they miss my vein!!!!
Take care ladies and have a good weekend!
Susan in Germany
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Susaninicking, am crossing everything that it will be nothing serious - a week is a long time to wait, and we all know how hard that wait is, especially when you've been told there is something a bit suspicious - hang in there, and don't forget to breathe!!
I had my scan on Friday and they e-mailed me the results, as I asked, so by the time I got home, the results were in my in-box already - shock, I thought it'd take longer. Not good news, unfortunately.
All the nodules in my lungs have grown back to a little bigger (and more of them) than they were before I started on the Taxol. So the Taxol shrank them in the first 3 months, then they grew again during the next 3 months. Goodbye to Taxol.
They are still small and I'm still asymptomatic, and feeling better each week away from chemo, so that's the good news. My onc wants to start a new chemo sooner rather than later, as it's easier to treat them small, plus he's worried that if we wait it could spread to other parts too.
So we compromised and I'll have the next 2 months off all treatment, then we'll do a scan early November, see what the nodules did with no treatment, and then decide what to do.
He did say if I wanted to, I could do some Ozone therapy meantime - does anyone know anything about that? He said he can't say it'll do anything for the cancer but he had a patient who did it and said she felt good from it. (her cancer stayed the same though). It is nerve wracking to know the tumors are there and I'm not throwing anything at them, treatment wise, so maybe doing the ozone will make me feel better from that point of view.
He also suggested regular massage (I store all my tension in my neck and shoulders), some dry needling from my physio for the knots on my neck muscles, exercise, and doing things that make me feel good.
Another one - Green Vibrance - that's supposed to be a good thing to take to boost the immune system - it's a powder you mix with water I think - anyone know anything about that?
I will be off to Israel in about 2 weeks, bliss.... Can't wait to just spend time with my son. Oh, my onc said I should have a long soak in the Dead Sea too!! Doctor's orders, guess we have to do it! We have already planned to spend a night at the Dead Sea and go up Massada again. Oh it's going to be hot there still and we can swim and I can hopefully forget about cancer and chemotherapy and the scary future for a while!
It is so nice to read of all the women who have survived TNBC - the picture looks better, Sylvia - 450,000 is a big number!
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Hello Carolben,
I am posting to let you know that you are in my thoughts. I was so sorry to know that you did not get good news from your scan. This must be a terrible time for you and a disappointing one to know that the Taxol has not resolved the problem of the nodules in your lungs. It is very odd that the Taxol shrank the nodules in the first three months and then they grew again in the next three months. Did your oncologist have any ideas as to why this happened?
It is good to know that the nodules are small and that they are not causing symptoms that are making you feel unwell. I hope that you continue to feel better and better as the weeks away from chemotherapy go by.
What an impossible situation you are in. Being away from chemotherapy makes you feel better but there is the worry of the nodules getting bigger and perhaps spreading. I can understand why the oncologist wants to get on with chemotherapy, but he is not inside your body to know how chemotherapy makes you feel.
I do hope that all will go well for you. The two months off treatment will surely help your body and I do hope everything will be fine in November. All of us on this thread will be here for you. I do not know if you are interested in taking bitter almond kernels. They are supposed to help kill off cancer cells. I have been taking them ever since I was diagnosed and am still taking them.
I have heard about oxygen treatment and I think this is the same as ozone therapy. Cancer cells do not like oxygen, so I think it would be worth trying.
I know that patients do say they benefit from massage etc. It is a good way to relax.
I would think that anything that helps to boost the immune system would help. There is a lot of information online about Green Vibrance. Here is a link for you and everyone else to have a look at.
http://www.water-for-health.co.uk/green-vibrance-powder.html
During my treatment I took oral Iscador, pycnogenol (maritime bark extract), and astragalus, along with green tea, which I am still drinking, and the bitter apricot kernels.
Concentrate on your visit to Israel. Keep looking forward to that. I am sure spending time with your son will do you a power of good.
Try to enjoy that holiday and switch off cancer and chemotherapy.
Keep posting until you go on holiday. Post about anything you like. This will keep you busy.
Fond thoughts.
Sylvia xxxx
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Hello sam52
Thank you for your PM. I have had a couple of busy, stressful days, Monday and Tuesday, so I shall answer tomorrow when I feel more relaxed and rested.
Love.
Sylvia xxxx
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Hello susaninicking
It is good news to know that you have got through chemotherapy without nail and neuropathy problems. It is good for others to know about ice during infusions. This was not mentioned to me when I was going through treatment.
Let us hope that the radiotherapy will take care of this mystery spot. It is supposed to be there for such things. Try not to worry and think positively. Your next challenge is to get through your radiotherapy, so concentrate on that.
Keep posting and post about whatever you like.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot
I just wanted to let you know that I shall be thinking of you tomorrow, September 4th when you are due to start chemotherapy. You are going to get through this. We are all thinking of you.
Fond thoughts.
Sylvia xxxx
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All the best for tomorrow Jackpot. It is so doable! I found walking into chemo the first time to be scary and overwhelming but taking a deep breath, throwing my shoulders back and marching in there determined was helpful. Chemo became the biggest joy of my week eventually.....fabulous women, so much laughter, hilarious nurses, just so much fun. I hope to never have to go back for chemo but to not drop in to visit is unthinkable. My husband loved it too. It was the biggest event of our week for the last 12 weeks. It's a one step at a time situation in the beginning but it will pass!
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Hello everyone,
I have just received my latest e-mail from Chris Woollams at Cancer Active. His e-mail address is chris@canceractive.com.
I have been reading the contents of this e-mail and hope that you will be interested enough to sign up to receive one or at least look up the headings that I give you. The main heading is 'Six crucial things you must know if you want to beat cancer'.
1. It is you and your body that beat cancer.
Under this there are the following headings.
An objective assessment of Chemotherapy drugs.
Brave Macmillan honesty over side-effects.
Living proof.
This is all about how those that survive cancer seem to have done other things in order to survive cancer.
2. You have the potential to increase your own survival and even prevent a cancer returning.
Under this heading there are:
Increase survival and stay cancer free.
Exercise and survival.
Supplements to stop your tumour regrowing.
Curcumin.
3. Ignore your friendly gut bacteria at your peril.
The microbiome and your good health.
Multi-strain probiotics.
4. To survive cancer longer, cut your glucose and carb consumption.
Under this heading there is:
New research on the ketogenic diet and hyperbaric oxygen.
Hyperbaric oxygen.
Reducing your blood glucose levels to fight cancer.
5. Stop the spread of cancer.
Under this heading there are:
Resveratrol
Sodium Bicarbonate heads for clinical trials.
Aspirin increases survival.
Vitamin D.
Buy the book 'Everything you need to know to help you beat cancer'. With reference to this book, you need the 4th edition which is the most current one, and not the old 2005 edition being sold cheaply in some place. It is best to buy from the wholesaler. (Phone 0203 186 1006). If you sign up for the e-mail you can click on the reference underlined to order direct.
6. Stress management helps you survive 'significantly' longer.
Under this there are:
Metal state, stress and cancer.
Amy's story - how an enlightened Integrated therapy programme beat brain cancer.
If you sign up for the newsletter you will find that all the headings under the six main headings are underlined and it is these that you can click on and get more details.
The e-mail address is chris@canceractive.com
The website is http://www.canceractive.com
August 31st was the birthday of Chris's daughter Catherine, who would have been 35 if she had not died of brain cancer 9 years ago. Catherine survived 4 years instead of the less than 6 months that her oncologists had given her as a prognosis. From the death of his daughter ensued his books on cancer, his website and that most informative magazine, icon.
I am sure you will be interested to know that 3,800 to 6,000 people every day visit his website.
I hope you will all find this useful and I shall certainly be reading everything in more detail as I click on the headings.
Thinking of you all.
Sylvia.
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Hello everyone,
I saw on one of the other threads that someone was asking about drinking alcohol. I cannot see how anyone can ask whether TNBC survivors drink alcohol. There was a lot of publicity in the papers in the UK last week about how bad alcohol is for you, especially when you start drinking it as a young person in your teens. As far as I remember, the article said that it appeared to be a cause of breast cancer later on. I did not drink much before my diagnosis and have not had any alcohol since diagnosis eight years, two months and fifteen days ago. I think everyone has to make up their mind what they do.
Did anyone read those articles last week?
I hope all is going well for you this week and hope that Jackpot has not suffered too much from her first chemotherapy.
Does anybody hear from Liv or Lola in Australia?
Thinking of you all.
Sylvia.
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Hi Sylvia and susaninicking
Thanks for thinking of me today,
It was really scary walking in there today not knowing what to expect,
It didn't start well after three nurses and four attempts to insert the needle,
I've got a bit of a pin cushion arm right now, in the end the team leader inserted it
In seconds compared to the previous two and there was no dramas for the rest of my time there, my son and my sister in law came with me which was good as we had a good laugh....just what I needed....
I got anti sickness meds through the IV and was told I shouldn't feel sick for the rest of the day but feeling terrible right now and feeling nauseous and being sick since tea time, did anyone else have this straight after chemo, hope it doesn't last too long,
At least that's one down and five to go
Take care
Jackpot0 -
I was always sick a few hours after chemo with EC. I would come home, sleep a bit, wake up, get sick, sometimes vomit, sometimes just hug the toilet and heave. For me the key was just go to bed early because by morning I was always better. Damn I hate being poked over and over and over with a needle. My position is that I want to be a good patient but please learn the needle thing on someone other than me. Get a good night's sleep Jackpot. It will be some better in the morning.
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Hello Jackpot,
Thank you for your post. It is frightening when you first walk into the chemotherapy ward but now you know what to expect, so it should be alright next time.
I think it is a bit much that three nurses could not get the needle inserted and that the team leader had to do it. If done properly the needle should have been inserted the first time. I was glad to know that everything went smoothly after that. It was good that you had the family with you.
I was concerned to know that you have been feeling nauseous and being sick, as this must be very off putting for you. I experienced absolutely no nausea or sickness throughout my treatment.
It is right that you had anti-sickness medication through your IV treatment, but I would have thought you should have been given some to take away with you to take for the first two or three days. I know that I did. Did you remember to drink plenty of water to flush everything out of your system and you need to do this for a few days and to drink plenty of water throughout your treatment. I was advised to make sure I had breakfast before I went off for my chemotherapy treatment and I used to have hard boiled eggs on wholemeal toast and a banana. You do not want to have your chemotherapy on an empty stomach. I probably had something from my homoeopathic consultant as well. I would have made sure I was also getting plenty of ginger in the form of lemon and ginger tea (often with bits of fresh root ginger in it), ginger biscuits and ginger capsules.
I do hope you are feeling better today and not feeling nauseous or sick. I hope the next round will be better.
Remember to drink plenty, get plenty of rest and keep looking forward. As you say, one down and five to go!
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
I am behind with the postings on the group, I have been doing some work for the electoral commission which has been interesting but has tired my brain out a bit. I would like to do this work in England just to see if there is any similarities. I am discovering that it is quite common for children, when they marry, to build homes on their parents land. I had one road today, about a mile long, where 70% of the people had the same surname.
Killyleagh had a distinguished visitor today, Prince Andrew, he is Baron of Killyleagh. I was passing the castle, oldest inhabited castle in Ireland, and his motorcade passed by.
The weather is turning quite autumnal this evening, just as well as the locals are complaining about the heat :-)
Michael0 -
Hi Sylvia
Still not feeling right, I hope the rest aren't going to be like this,
My McMillan nurse has said to tell them next time I go that the anti sickness meds aren't working and they may need tweaking a bit,
Did you or anybody else have insomnia during treatment, the last two nights I've been waking at around 1.am and not being able to fall asleep again....so frustrating.....
Hopefully I'll feel better tomorrow as I'm going to look at some wigs but got a feeling I'm just going to wear bandanas
Hi susaninicking
Did you take anti sickness meds for a few days after chemo? Not looking forward to my next app but hopefully if they can get my sickness meds right it won't be as bad
Take care
Jackpot0 -
Hi Jackpot
If steriods are part of your treatment tha most likely the cause of your insomnia. The first time I had chemo I felt so tired but could not sleep. It wears off after a few days.
What antisickness meds are you on?
Michael
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Hi Jackpot,
I had an awful time sleeping too for the first few nights. I could sleep the night of chemo but only until 3-4 a.m. So annoying. Then problems for a couple more nights. I used Tylenol P.M. finally.
I took anti-nausea meds for 7 days after every infusion. My nausea really never was under control but would stop at day 7. It was kind of a low level nausea while also starving because of the cortisone. Eating was the only time I was not feeling the nausea. This will pass, just hang on. The nurse is right, there might be meds they can change or add.0 -
Hi Michael
They give me dexamethasone, ondansetron and domperidone
But I was going to stop taking them because they are not helping anyway
Hi susaninicking
They only gave three days worth but there not helping so i don't think I'll take anymore,
I can't even say eating helps as I have no appetite at all and have ate very little since Wednesday, I feel like if I eat its not going to stay down, but even if I don't eat there's a constant feeling of nausea without actually being sick, is that what you experienced
Jackpot0 -
I had a LOT of nausea medicine. I must say Germany did not hold back at all with the prescriptions. I took the meds for a week after chemo with the assumption that I might be worse without them. Twice the nausea started Immediately after chemo and twice there was a day or two delay, but it always arrived eventually.
I was sick only twice with my first 2 chemos on the evening of chemo. Then it was just a week of nausea without vomiting. Nausea just enough to make you feel lousy. I have a friend here who just had her 2nd EC and has had zero nausea. Incredible. Just the difference in people I guess.
Get more medicine for sure. 3 days is nuts.0 -
Hi Jackpot,
I had 6 sessions of FEC and didnt have too much nausea but my nurse told me to contact them if I did and they would tweak the meds . I had steroids for 3 days and the different meds in case the nausea continued longer.
The first one is the worst and I hope that the nausea will settle somewhat but if not I would contact the chemo centre.
Yes for the three or four days after chemo I found that I woke up very early and found it impossible to sleep but as chemo went on I got to know how my body reacted and often did things at 4 30 in the morning such as bake Xmas cakes and preparing meals or dusting. I tried to use that excess energy the meds gave me because after the first few days I would be tired as time went by.
I was also very keen on rinsing my mouth and throat out and drinking lots of water.
I do hope that things will settle for you and ask for the senior nurse for number 2 chemo.
Thinking of you
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Hi ,
Just a quick post to say that on Thursday I went to meeting of support centres in Mayo and the town where the meeting was held was very close to Knock.
I am not a catholic but went with the other women to a mass for the sick there and recieved the blessing.
It is a place where similar to Lourdes an apparition of Our Lady was seen, I think in the late 1800s. I must look into the history of it. A huge basillica has been built and bus loads of people go there every day.It brings them great comfort and solace. It is amazing to see the faith that people have and the peace that they get from the masses and the shrines.
Anyway I lit a candle and thought and prayed for everyone on this thread. My friends assured me that I will be listened too even though I am not a catholic !
Wishing everyone a good weekend and realising what great support I have had from my centre and from Sylvia and others on this thread.
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Hello Michael,
Thank you for your post and I hope you have managed to catch up with what is going on with the thread. I would be interested to know if you read my post that I did after receiving my latest e-mail from Chris Woollams at Cancer Active, entitled Six crucial things you must know if you want to beat cancer. I have been busy reading it, the six main headings into which it is divided and all the links underlined within those headings. I printed it all off and have been reading my way through everything. I would be interested to know your opinion on all of this.
I was most interested to know that you have been doing some work for the electoral commission. I can imagine it has been interesting but tiring. I was intrigued to know that in Northern Ireland it is quite common for children when they marry to build homes on their parents' land. I was also intrigued to learn that on one road 70% of the people had the same surname! I do hope you get to do the same kind of work in England. Children staying close to their parents in Northern Ireland seems to buck the trend in England of children moving further and further away from their parents. Here in Devon I wonder if it might be the same as in Northern Ireland.
I was interested to know that Killyleagh had had a visit from Andrew Windsor. It never ceases to amaze me that these people have all kinds of titles. I wonder what he was doing there? I am no royalist.
Summer is definitely disappearing now. I am waiting for rain to hit Exmouth, as we desperately need it for the gardens. We are supposed to be having thunderstorms but a lot of the weather patterns seem to miss Exmouth.
Wishing you well. Are you having any treatment at the present time?
Sylvia.
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Hello Jackpot,
Thank you for your post. I was so sorry to read that you are still not feeling right. I do hope you will feel better once you have gone a week past your treatment. I am wondering why the anti-sickness medication is not working. Are you taking any other medication for any other medical problems that might be affecting them? Not having had any nausea, vomiting or sickness throughout my chemotherapy I realise that I must have been very lucky. If I were you I would phone immediately your breast cancer care nurse and tell her how you are feeling and ask what can be done. I suppose it is possible that you may have had too strong a dose of the chemotherapy drugs. I know they have to be very carefully measured out according to your height and weight. It is important to get it sorted out before the next dose.
I did not have any insomnia but I know that lots of women do and they say it is because of the steroids. I remember that I was given dexamethasone to take away with me and take for a couple of days. I obviously had no side effects. My medical book tells me that indigestion is a common side effect. It also says to avoid alcohol. As for domperidone my medical book says that it is very effective for treating nausea and vomiting caused by chemotherapy or radiotherapy.
I looked up ondansetron and it says common side effects are constipation and headache. Interestingly, it says that dexamethasone belongs to the corticosteroid group of drugs and the other two drugs belong to the anti-emitic group of drugs. All three drugs have quite long lists of special precautions to take if you are suffering from certain other conditions.
I decided from the start that I would wear a wig and I was comfortable with that. Most people thought I had not lost my hair! I had a very stylish turban to wear at night and indoors. You will find you feel quite cold around your head once your hair goes. I looked at scarves etc. but did not like them. I got my wig at the wig department of House of Fraser, paid for by the NHS but bought the turbans at the same place.
You might like to try eating some mashed potatoes quite regularly during your treatment. I found they helped me a lot and I know that a lot of the women on this thread going through treatment read what I said about how they helped me, did the same and found them very beneficial.
I hope you begin to feel better soon.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
Thank you for your post. It was nice to hear from you.
I was interested to know that on Thursday you had been to a meeting of support centres in Mayo. You did not tell us anything about what went on at that meeting. Did anything of interest come out of it?
As you know, I am not at all religious but was interested to know about Knock. From your description it sounds very much like Lourdes which I visited just once when I lived in France. I do not believe in apparitions but belief in them does result in a big tourist industry and of course a money making one. I could not believe all the crowds in Lourdes and how big the basilica was there. From my point of view it was all a bit spooky! I may be wrong but it seems that all these supposed apparitions only occur in the catholic religion. From what you said it seems that your friends believe that God listens only to Catholics.
Thank you for your kind words about the thread. It has been going for nearly three years now.
I hope all is well with you and your family.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I hope you will all have a good weekend and that you will enjoy the last days of summer (sorry, Carolben, I know that it is the last days of winter for you!).
To Carolben, I hope you are spending your days as you wait to go on holiday in ways that make you happy. I keep reading about how beneficial yoga is as a complementary treatment when going through cancer. I know that you enjoy it.
To sam52, thinking of you and hoping the beginning of your school term went well.
To peterandliz, are you back home now or are you travelling somewhere else? What is happening with Liz and her friend?
To Sam_UK, thinking of you and wondering whether you have started your cosmetic surgery yet? I hope all goes well.
To EmmaL, I hope you are managing to love on after treatment and that your anxiety is slowly disappearing.
To adagio, I hope you and your husband are having a good holiday and that we shall hear from you when you come back.
To susaninicking, I hope all is well with you as you wait for radiotherapy. Thank you for your kind words and words of comfort to Jackpot. I am sure they are most appreciated. It is so important for those of us past a treatment come on the thread to help others through their journey.
To InspiredbyDolce and PeggySull, in the US, I hope you are enjoying life post-treatment.
It would be interesting to know whether any of you did any further investigation on the information I posted from Cancer Active. There is an unbelievable amount of information on these pages and I am slowly working my way through it all.
I know you will be interested to know that amidst it all is an article about the American Cancer Society and complementary therapies. It urges three complementary therapies crucial to cancer patients. They are diet and exercise as two essential complementary therapies for people who have had cancer. The report states there is strong evidence that an active lifestyle and a diet rich in fruits and vegetables can help cancer survivors live longer and stay cancer free. The recommendations are:
Get regular aerobic and resistance exercise.
Eat a diet low in red meat and saturated fats, and high in fruits, vegetables and whole grains.
Use other weight-management strategies, such as portion control, to reach and maintain a healthy weight.
People who have had cancer are urged to build these three therapies into their integrated treatment programme.
We all have to remember to cut our glucose intake, as research studies show that glucose encourages cancer cells and tumours to grow and that people with the highest blood glucose levels survive the least. It is also important to cut all cows dairy, as this increases levels of IGF-1, a cellular growth hormone in the body.
For more information please read all these pages.
Thinking of everyone and wishing you all well and sending all our comfort and support to those going through treatment.
Sylvia.
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Hello everyone again,
It has been a very wet, cool day here in Exmouth, so I have been catching up on some reading. I have read my way through the many pages I printed off by clicking on the underlined titles of the latest e-mail from Cancer Active. There is so much information there and much food for thought.
On the title Living proof I did a bit more research and have been reading the stories of cancer survivors, many of them breast cancer survivors. They all make very good reading. If you want to read them the link is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=146&Title=Cancer%20survivors
Besides how they tackled their cancer there are some interesting life stories. You can choose which ones to read and I would love to know what you think. In one of them there are some recipes for making liquid nutritious foods for those patients who do not feel like eating.
That is all for today.
Best wishes.
Sylvia.
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Hi Jackpot
I recall that when Janette had chemo she took domperidon and as far as I recall she had no sickness but she also wore an anti sickness wrist band and that may have helped. Perhaps that is worth a try.
Sylvia, I haven't read Chris Woolland email but I will try and read it this week. I am still taking antivirals as part of my treatment. I am suffering from very stiff upper legs and I am wondering if it is a post Steriod effect or if it is clambering in and out of the car at frequent intervals.
I was wrong about Prince Andrew, apparently it was Prince Edward. I think he was visiting the outdoor education centre.
Michael0 -
Hi everyone
It's interesting to hear how everyone is different when it comes to side affects,
Some people get none or very few and some seem to get them all....
The nausea seems to have subsided now but as soon as one symptom
Stops another one starts, just wondering if anyone can identify with lower leg muscle aches and a constant headache for about three days now as side affects which no amount of pain killers seems to shift....I did phone the chemo ward to ask whether this was normal and was told it was and to phone my gp if it continues which wasn't very helpful considering you can wait a week or more for an appointment at my doctors,
Michael I will definitely try the anti sickness wrist band... anything is worth a try...thanks
Take care
Jackpot0 -
Hello Sylvia,
To reply to your question regarding 'cure' after 5 years for triple negatives; I did indeed read that after 5 years, mets were very unlikely, and that after 8 years you could consider yourself cured.I am not sure if I have come across a TN who has had mets diagnosed after 8 years - I think they are all ER positive.
My bc oncologist friend at the Karolinska Institute in Sweden told me that late recurrences (ie mets) were more likely to be grade 1, since they may lie dormant; I would imagine that TN tumours, being largely grade 3, fit this pattern, inasmuch as they either progress early on, or not at all.
That should make all you TNs feel a little more secure, once you have reached 8 years.
With love,
Sam x
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Hi Jackpot
The pains could be from the steriods, otherwise known as steriod crash.I had it the first time I had ststeriod, it was awful.
Michael0
