Calling all triple negative breast cancer patients in the UK
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hi Helen Louise
Did u have Taxol for chemo? It does work on long bones and nerve endings and it takes a while before they regenerate and lengthen. It’s also cumulative and occurs later as the nerve endings lengthen so it could be neural. Try some head and neck stretch’s or a massage. Magnesium also helps.
Cheers
Kath
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hi Helen Louise
Did u have Taxol for chemo? It does work on long bones and nerve endings and it takes a while before they regenerate and lengthen. It's also cumulative and occurs later as the nerve endings lengthen so it could be neural. Try some head and neck stretch's or a massage. Magnesium also helps.
Cheers
Kath
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Hello everyone,
I've been reading through some information released by The Massachusetts Institute of Technology at the end of last week. Using artificial intelligence, a team of researchers has discovered a new type of antibiotic which is able to kill 35 types of deadly bacteria. It worked brilliantly during the petri dish stage and is now entering the mouse phase, with human trials to follow later, assuming all goes well. James Collins, a bioengineer on the project says that he wanted to develop a platform for using AI 'to usher in a new age of antibiotic discovery'. I was greatly relieved to find that there's something in the pipeline, so fingers crossed. I also wonder if AI might be the future for individually tailored cancer treatment.
Hope everyone is doing well and that Raymond is beginning to improve now he's in Sylvia's care.
Love,
Gill xxx
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Hi kath, thanks for tips. I had FEC D - D for docetaxal which is probably in same family. That was early 2018. Ended up with some peripheral neuropathy and vein damage. Aside from that I have been lucky SE wise thus far. Saw another dentist today who confirmed nothing dental as far as he can tell. He said sometimes transient pain just happens. Relieved to report pain very intermittent and I don’t need any pain relief ATM. Will know more after PET CT next week.
Hope your doing well
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Hi Mary,
So far the UK has 14 people who have tested positive for coronavirus, but with the amount of flying abroad people do I would expect that to rise sharply. I doubt if our Prime Minister or Health Secretary have any plans to cope with the sick when this happens. The failure of our NHS is due to years of deliberate neglect. The wealthy minority are able to buy in their healthcare, the rest of us just have to join the end of ever increasing waiting lists. If you're seriously ill then London is the place to be, so many hospitals and centres of excellence. My local GP was willing to transfer my treatment to a hospital outside Norwich if I wished and I considered both Guy's in London and Addenbrookes in Cambridge. I was surprised that Exeter Hospital couldn't do Raymond's bypass surgery. I would have thought that a nearer hospital could have been found, Bristol for example.
Michael and I are at the beginning of a cold, sore throats, sneezing and so on, we plan to go to the Ash Wednesday service tonight, but don't want to spread our germs around. We'll have to see if there's a secluded space at the back away from everyone else. Michael asked one of the priests if the Cathedral had any plans in place for coronavirus. The answer was along the lines of 'what will be, will be'.
Hope Maryjv's treatment is going well and also her new port. We haven't heard from Marias for a while.
Take care.
Much love,
Gill xxx
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Hello lovely ladies! Had my first taxol treatment on Monday and the ct scan shows the chemo is working!!! Taking this one day at a time but thank you all for such encouraging words and encouragement! Sending love and prayers to all 🙏
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Congratulations Mary, that's amazing news.
Gill xxx
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Hello everyone,
Just to let you know that Raymond has now been back home for five days and is looking much better for being in my tender care (so he says). I shall tell you more details about four weeks in hospital when I feel better myself. Would you believe he arrived home at 11:15 pm last Friday by hospital car because they messed up at the hospital with the times. The driver then had to return to London, another five hours drive!
The main problem at the moment is oedema in the legs, but especially in the one where the long saphenous vein was removed to do the bypass. It will be a slow job to get rid of the oedema. He has lots of pills to take, which is not very happy for us. Does anyone have any tips for getting rid of oedema in a more natural way than diuretics. He is walking in the apartment as much as possible.
I want to say many thanks on his behalf to our regular posters, Mary, Maryjv, Gill, Kath, Helenlouise, adagio, Marias, Jags56 and any others that I may have forgotten.
Love and best wishes to all.
Sylvia xxxx
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Hello Sylvia,
It's good to know that Raymond is improving now that he's being properly looked after. The NHS is good in an emergency, but when it comes to aftercare it simply doesn't have the staff. Ideally, Raymond should have a rehabilitation plan in place and this would include physiotherapy to help with oedema. I would think that there are specific exercises for recovery following heart surgery. I had oedema in both legs following C difficile and my oncologist advised keeping my protein levels up as this helps to keep salt and water within the blood vessels and prevents leakage into the tissues. My oedema largely disappeared after a few weeks, though my left foot remains slightly swollen. Other than that, elevate feet, gentle exercise, keeping fluid levels up and salt intake down in order to help the kidneys work efficiently should help, which I know you'll already be doing as a matter of course. Like you, I'm not keen on diuretics.
You must have been worried by Raymond arriving home so late. It won't have been easy for him to relax or rest on such a long journey. Poor driver too, he should have been given overnight subsistence to pay for accommodation before starting the 5 hour journey back to London.
You've both been through a considerable ordeal and need the time and space to heal. Please be kind to yourself Sylvia, rest whenever you have the opportunity.
My best wishes to you both.
Much love,
Gill xxx
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Well that’s good news Mary & Sylvia, aside from Raymond’s oedema.
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hi Sylvia
It's so good to hear that Raymond is doing so much better. Is he wearing support stockings? These can be helpful with edema, the kind that go to the knee is what the docs now recommend. They need to fit him properly, and be a quality product. Also, put them on in morning when legs are the smallest, at least 20mm-hg for stocking, which denotes the pressure.
My acupuncture doc suggests horse-chestnut pills for leg vein issues, not sure if that's pertinent. Otherwise, it sounds as if things are much better.
Have to say that if we had the hospital drive us 5 hours home here in USA, it would have cost us a pretty penny! We have to rustle up our own transport.
Talk to you soon, love, Mary
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Sylvia, wonderful to hear Raymond is in your care at this time. Agree with high protein intake and relationship between edema and low Albumin. Hoping for a speedy recovery, wishing everyone well and keeping you in my thoughts and prayers
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Hello M,aryjv,
Thank you for your post and for your kind words.I was interested in what you said about low albumen and oedema. Wthat causes low albumen?
I am glad that all is going well with your treatment.
Love,
Sylvia
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Many factors...decreased protein intake, increased protein needs, surgery, inflammation....just cont to focus on lots of lean protein...fish, chicken, beef, pork, eggs, beans, legumes to help build back Raymond’s Alumin stores!!
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Hello Mary,
Thank you for your kind words. They mean a lot.
Raymond is not wearing support stockings and the hospital did not suggest them. The surgery on his right leg to remove the saphenous vein to use for the bypass surgery is too swollen and sore and would not be able to bear anything on it.
The oedema is slowly going but I have been told it may take months and so he is on diuretics.
I did know about horse chestnut pills and even perhaps cream, but for the moment I think it is best to let things heal slowly but surely in a natural way. I am putting on arnica cream for the many bruised parts of his legs and I am doing exercises with him and keeping him walking around the apartment.
Raymond was taken from the hospital in Exeter to the Hammersmith Hospital in West London by ordinary ambulance but was brought back home here by a special hospital car and a very nice driver. These people are volunteers. Usually you have to make your own way home. Raymond was entitled to the car because of the distance. These things are certainly not free on our NHS. They are paid through our taxes and National Insurance. They are just free at the point of treatment because already paid for.
Bring me up to date about what is happening with you and I hope the rest of our group will do the same.
I have very little free time and am looking after Raymond throughout the day.
If there is anything new and of interest in the latest two emails from Chris Woollams please let us know.
Love and best wishes.
Sylvia
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Hello Helenlouise,
Thank you for your kind words. Raymond has made good progress this week now that he is back home.
Please bring me up to date on what is happening to you.
Love.
Sylvia
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Hello Gill,
Thank you for your latest post and for all the concern and kindness you have shown for Raymond.
I agree with you about th NHS. It has been brought to its knees by ten years of Tory austerity and they have undone so much of the good work brought in by Labour in 1945 amd 1948 and what thanks did they really get as they were voted out in 1951.
A cardiac rehabilitation will probably be offered but will probably be bureaucratic.
We are lucky to have a friend who works at Bart's Hospital in London so she sent me the booklet they give to patients having heart surgery, so we are already doing all the exercises etc. She works with the heart surgeons and deals with their patients going through surgery like bypass ones.
I know it will be a slow process getting rid of the oedema.
You might be interested to read up about Dr David Agus. A leading oncologist. Before all the hospital stuff happened I must have watched an interview on RT on Sophie and Co. I remember him saying that we should have our meals at the same time every day, three meals, but eat nothing in between and he believed in doing long fasts. He said optimists have a 30% greater chance of staying healthy and recovering from disease. There was something about there was no clinical data about autophagy being able to prevent cancer. I cannot remember now what that all about.
Thank you for your great support.
Love.
Sylvia
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HI Sylvia
I think Raymond is a very lucky man to have you for a nurse, He could not find a better oneI It does sound as if you are very busy, and he is also very busy with his therapies.
About the edema taking perhaps months to clear up, I do have a friend who right now is dealing with this, although his swelling was because of a blood clot. He has been on the blood thinners for some time, and swelling is slowly leaving his leg.
it's very good that Raymond could be driven home by a driver, I'm glad they offered such a service.
My life has been busy, one week was taken up with meetings, there was the funeral of an dear aunt, and the rest of the time has also been very busy with rather mundane things. I'm still having therapy with a therapist for my shoulder, I see my orthopedic doc next month and I'm pretty sure she will clear me from having to drive to all these therapy sessions then. Of course, I still take my exercises at home, now and in future for quite a while, I think.
I backed my truck into a pole, and had to take it to the body shop since I couldn't open my tailgate. I started playing cards weekly with a group of friends, that has been fun. I do what I can outside, but the ground is so wet from our frequent rains that it's soggy everywhere. Sometimes warm and sometimes cold. The only signs of life in my yard is from the tiger lilies, they are trying to send up green shoots, but they sometimes get nipped by frost.
Remember when I said I wanted to come to the UK in early summer and visit? Well, enter the Coronavirus virus. Now the advice is to be careful traveling, if one does travel, there is no guarantee there won't be a quarantine situation when trying to return home because the virus seems to travel quickly. It's all worrisome, I hope a successful vaccine is found in a reasonable amount of time. I have heard that scientists in Israel are making very good progress in this matter.
I will try to get to Chris Woollams' post, I saw it in my inbox but didn't get back to it. Thanks for reminding me.
I send you and Raymond my warmest wishes for good healing, and good rest, I think of you both often.
Love, Mary
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Hello Sylvia,
What on earth would our NHS do without volunteers? If makes me wonder how Raymond would have got home without the volunteer driver, he certainly wasn't fit enough to travel by train. Exmouth is such a long way from London.
I was interested in what you had to say about Dr. Agus. I always try to eat at the same time each day but don't eat three meals as I miss breakfast. Since chemotherapy I've no longer felt up to eating in the mornings. I always managed a very light breakfast before that. Snacking between meals keeps insulin levels high and this in turn causes the body to store fat. I think this is the reason why we are seeing so much childhood obesity these days. Not only are crisps and chocolate snacks loaded with fat, but elevated insulin levels are helping the body to store this fat. How long before we have teenagers with heart/vascular problems? I knew that fasting before each chemotherapy cycle is thought to help chemotherapy drugs to work more effectively. Much more research is needed, but it's worth reading up about autophagy there's an awful lot of information about it online, all very interesting. Is there a lower incidence of cancer among people who fast regularly for religious purposes I wonder?
I was also interested in the theory that optimistic people have a 30% better chance of staying healthy and recovering from disease, that's quite high. I'm a glass half full sort, so I'll hope for the best. Most of us on the thread seem to be optimistic people and we tend to make the very best of our situation, thank heavens.
Like Mary, I think of you and Raymond often. I have my fingers crossed for a sunny March down in Exmouth, brighter, warmer days lift the spirits and may help Raymond to feel a little better. I'm hoping his recovery continues to move forwards and his oedema improves.
Look after yourself Sylvia.
Much love,
Gill xxx
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hello everyone i trust follow very well. Sylvie that Raymond recovers completely and you have a way of resting after all is stressful situation. I'm fine, stable, tired all the time but fine. later I catch up with all your writings.
Abrazos
Marias
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hello everyone i trust follow very well. Sylvie that Raymond recovers completely and you have a way of resting after all is stressful situation. I'm fine, stable, tired all the time but fine. later I catch up with all his writings. a hug Maria
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Hello Marias,
It was good to hear that you are now stable, not so good that you feel tired all the time. I know that your apartment has a lot of steps, I'm sure that this doesn't make life any easier for you. I hope that you are now receiving your medication on time. Those long waits at the hospital and then being told to come back the following day must have been exhausting.
My thoughts and very best wishes are with you.
Much love,
Gill xxx
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Hola Marias!
I am glad to hear from you, and it's good that you are stable and well. Tired is another thing, I think it takes a long time to get over all these things you (we) have been through, and you have been through more than most! So I'm glad you are fine, and hope you find life becoming enjoyable again.
Talk to you soon, love and abrazos, Mary
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Hi everyone,
Sylvia - So glad to hear that Raymond is slowly improving. I also hope that you are taking a bit of time to care for yourself also.
Gill - I never did fast during chemo - but I am quite interested in intermittent fasting - which, as I understand it - is having a long break (fast) in between the last meal of the day and the first of the next day - I have read 16 hours is good - but I have never been successful going that long without food - generally I am OK with about 14 hours. There are so many different things to try to help ourselves - that I find it quite impossible to do them all. I love breakfast and would have to say that it is my favourite meal of the day - albeit a very simple one of oats soaked overnight in homemade organic almond milk to which I add ginger, chia seeds, coconut, and some other nuts usually walnuts or hazelnuts. Then in the morning I add a dollop of yogurt and mix it all up and sprinkle with cinnamon. And of course a mug of coffee with coconut milk - yum!
Mary - how wonderful that your should is mending - exercises are so important for the shoulder - I remember when I had frozen shoulder that the physio recommended a pulley for me - it was painful, but it sure did help. I think Spring should be coming soon - we are all so ready for it. What card games do you play with your friends? I go to a scrabble group every Tuesday and thoroughly enjoy it.
Maria - so lovely to hear from you and it sounds like things are improving for you. Being tired seems to be a constant companion for a lot of us after chemotherapy and various other treatments.
Kath - when is your holiday - must be soon?
Maryjv -- hope your chemo is soon coming to an end - and that you do not have too many side effects of the drugs - it is such a long haul .
As for me - I continue to improve -- no more cough - still a bit of breathlessness - no more chest pain. I have been called for a repeat CT scan because of the ground glass opacity in my left lung - they want to see if it has resolved - I surely hope so. To be honest, I am not thrilled about another scan with contrast dye - but on the other hand it will be good to know what is going on inside. We have rescheduled the vacation we had to cancel, and now leave on April 12th - hopefully covid-19 will have settled down a bit by then - it is a bit of a worry when it comes to travel.
Wishing only the best for all - take care of yourselves - we are all so worth it.
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Hi adagio,
Good to hear that you're continuing to improve. I know CT scans with contrast aren't something to look forward to, but worth it for the peace of mind I guess. A clear scan means going off on holiday without having this worry hanging over you. As for COVID-19, who knows what's going to happen? There's a limit to how long we can put our lives on hold for.
Your breakfast must be the world's healthiest. I should try harder, but food in the morning is no longer something I can face. I don't even have tea or coffee, just warm water. Mid-morning I have a mug of green tea. I eat a healthy lunch and dinner and try not to eat anything after 6.30pm.
Good luck with the scan.
Gill x
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Hello my tnbc friends,
We returned from Melbourne this after with good news. Whilst the petct showed uptake in several areas my tumor burden is reasonably low. Thank goodness. The others really good news is the biopsy shows that I am now her2 positive! Oncologist was amazed so had the test checked three times. I also have a really high PDL1 score but that is only useful with tnbc when considering immunotherapy. As I am now her2 positive I can now be treated with herceptin. So no need for gene sequencing, no trial drugs! Plus I can have the treatment locally. Yes more chemo but as the cancer is spreading I am more than ok with that to try and knock It out one more time. Meeting with my MO here next week. Need to have a echo to check heart and a port put in and then I should be ready to go. The regime is Four rounds of three weekly with Trastuzumab & Pertuzumab & low dose Paclitaxel. Paclitaxel is given weekly in between. Bye bye hair again but I can live with that. Does anyone have experience with cooling fingers and toes to help prevent peripheral neuropathy?
Adagio good wishes for clear scans. Sylvia I hope you are coping and Raymond is getting better. Gill your doing a great job at keeping up with everyone’s news. Maria I hope the tiredness passes but does seem to be a linger side effect. Hello to both Mary’s and Kath and anyone else I may have missed. Will keep posting even though I’m not tnbc anymore. Xx0 -
Hello Helenlouise,
Wow! That's the best news I've had in weeks. I'm so pleased for you, you really deserved this break. Her 2 positive, who would have thought it? No wonder your oncologist had the test checked and then checked again. I did ice my hands and feet and have escaped peripheral neuropathy, but that might have been the luck of the draw. I had a small washing up bowl for my feet and ice-cream containers for each hand. I used bags of frozen peas and about a dozen of those freezer blocks you can buy for cool bags. I vandalised some old pillow cases to protect my skin from direct contact. Your chemo unit might have a freezer for patients use, if so, you can keep spare bags of peas etc frozen - or you can go online and buy ice gloves and mittens especially for chemo. I also painted my fingernail and toenails with very dark nail varnish and avoided the Cruella de Vil nails - might just have been my good luck again.
I'm keeping everything crossed for you. Give this nasty, devious little disease a good kicking.
Love,
Gill xxx
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thanks gill, you say dark nail polish? My mo says no mani or pedi while I treatment but I suppose paint isn’t the full treatment. Yes want to ice don’t need any more neuropathy than I already have.
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Hello Mary, Gill, Marias, adagio, Helenlouise, Maryjv,
I am just popping in to say thank you for all your posts. I just about find time to read them but have no time at the moment to post. Raymond still needs a lot of care.
I do hope all goes well with Helenlouise. What is it exactly that is HER2?
I hope I have not forgotten anyone.
Love.
Sylvia xxxx
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hi Sylvia,
My understanding is HER2 = human epidermal growth factor receptor 2. It’s the third receptor in the triple negative acronym. It is actually a gene that when in excess promotes the tumor growth. Herceptin is used to targets the cancer. Fingers crossed it will work for me.
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