Calling all triple negative breast cancer patients in the UK
Comments
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Hello Flora,
I do agree that some doctors have people skills and others do not.
If that were me I would ask about radiotherapy because it is often part of standard treatment and is used at the end to mop up any stray cells. It also has serious side effects.
I do hope that all goes well this evening with Dr Lavery. Is he/she at the same hospital as the first doctor you saw? What you do not want is to be in the middle of conflicts between doctors.
It is true that there is not much mention of metformin and aspirin on the thread at the moment. These things tend to come to the fore for discussion when they are breaking news about the next 'wonder' treatment. I have never taken these but then I am very anti pill swallowing. I do remember on the TNs forum that quite a few women were taking metformin. I think it is one of these old drugs, mainly used to treat diabetes that is being looked at for other uses. I am acquainted with it because I have a male cousin with diabetes and he has been on it for many years. Perhaps someone will post in to say they are taking it. For diabetes it is used to lower blood sugar.
As for aspirin, there has been talk for a long time about taking low dose aspirin, but, again, I would not take it. In my own case I truly believe in helping myself with a healthy diet and for me that is the Mediterranean/Rainbow diet with an emphasis on fruit and vegetables.
I am sure that we would all be interested to know what the 'experts' are saying about metformin and aspirin and any other drugs.
As for diabetes it looks as though you can turn this around by your diet, but some people just prefer to swallow pills.
From what you have posted on the thread I think you probably know all that you need to know about nutrition. Dr Hembry is highly qualified and experienced and I was impressed with the one consultation that I had with her in 2005. I went to see her and Dr Thompson because I was hesitant about orthodox treatment. I had always been very healthy and I was terrified about subjecting my body to all that treatment. I really went to see them to see if I could avoid that treatment. Dr Hembry told me I needed to have it and that she could help with the nutritional side. I was already on a healthy diet and doing much of what she advised. It was from the nutritional sheets that she gave me that I started drinking green tea in the summer of 2005 and am still drinking it and prefer to make pots of leaf green tea. I do eat bitter apricot kernels and have done so since 2005 but these are very controversial and get a lot of bad publicity. Dr Hembry probably may do telephone appointments but I think you are probably on the right track with food. Stay away from junk and processed food and sugar.
Take it easy and just eat in a simple way. If you eat fish get wild fish NOT farmed.
Dr Thompson also told me that I needed to have orthodox treatment but she would help me at each stage with homoeopathy, which she did and I stayed with her for five years. I took mainly oral Iscador.
As for bisphosphonates, I think we all have to make up our own mind. I think that 2% is nothing considering the side effects. Remember how wonderful HRT was supposed to be and is now considered a cause of breast cancer.
I was interested to know about the chemotherapy drugs mentioned. They are standard for breast cancer, AC = doxorubicin and cyclophosphomide (Brand name Adriamycin and Cytoxan). These are among the oldest drugs. The taxanes seem to be taken after these and will either be docetaxel (brand name Taxotere) or paclitaxel (brand name Taxol). On the thread women have said they find the taxanes easier if they have them in smaller doses every week instead of every three weeks. All of these drugs have side effects. Some women are now having carboplatin as well.
Some women have fluorouracil (brand name Adrucil) as well in combination with FEC. I do not know why this is added but someone may have the answer. The E stands for epirubicin (brand name Ellence) which is the same drug group as doxorubicin and both are a pinkish red colour and make your urine this colour.
You must remember to look after yourself as well, especially with four young children to look after. Looking after a cancer patient is very demanding and you must find time to switch off and have time for yourself. If you feel under stress try to join a group of cancer carers so that you can talk about what you are going through. I used to make sure my husband, Raymond, went to one of these groups. I found that I also as a cancer patient needed time just to be by myself.
What kind of books do you like to read? I like to read a lot, but I do not read much fiction these days.
Thank you for putting your mother's details in the signature. It is so helpful.
By the way, breast cancer with triple negative receptors is not that rare. When I was diagnosed I was told it represented 10% and mostly affected young women. Lately I have read that it represents 20%. When I was diagnosed with it I was nearly 63 and so this seemed unusual. However, since then, I can easily see that it affects older women as well. Since cancer cells keep mutating, I was told by my oncologist that it may not have started as such. Who knows?
You should ask about the filgrastim that Susie mentioned. It seems to be standard now to be offered this after each chemotherapy treatment to avoid trouble with neutropenia low white blood cells that chemotherapy can cause. The most common brand name seems to be Neupogen.
I was lucky not to have any problems with low white blood cells but I was not offered filgrastim when I started chemotherapy so it may not have been around.
Take care of yourself and make sure you have some leisure time.
Love.
Sylvia xxxx
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Welcome back Gina - we have missed your cheery posts!
So, so sorry to hear about the recurrence of your cancer - that must have been a shock for you - I will remember to pray for you and I wish you all the very best with your upcoming treatments. When you get your internet connection it would be great to have you back on the thread here and of course, if we can help in any way - that will be our pleasure. Take care of yourself Gina.
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This peace rose has just bloomed, so I thought I would put it on our thread.
I hope all of you are getting on with your daily living and hope you will all continue to post.
Best wishes
Sylvia xxxx
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What a beautiful rose, Sylvia. Thank you!
Thank you, as ever, for your helpful reply, and thank you too to Susie for your reassurance that chemo might not be as bad as we're expecting and for the mention of Filgrastim. I am certainly going to ask about that one.
Just to sum up where we are in my mother's cancer journey: we met another oncologist last night, who was puzzled by the recommendation, given at the initial consultation, that my mother have no treatment. She agreed with Mr Harries that, given that my mother is relatively fit and well for her age, having chemotherapy was certainly a "reasonable"option.
Some info that might be of interest to the TNBC community at large re: preventing recurrence:
Re: biophosphanates: Dr Lavery said this is routinely part of the Oxford NHS treatment now for post-menopausal breast cancer patients. When I mentioned the nasty side effects and jaw necrosis, she said that , at the low dose given to people like my mother as a "recurrence preventative" treatment, there shouldn't be any problems. She added that women who have metastatic breast cancer in the bones are on a much higher dose, and, in this population, she has indeed seen quite a few jaw problems. But she underlined that this should not be a reason for my mother to reject the treatment in her situation.
Metformin: she said that it has indeed been found that diabetics taking metformin have lower incidences of breast cancer than those who don't. She also said that diabetics who get breast cancer tend to have worse prognosis than non-diabetics who get it, and that taking metformin(if they weren't before) might help to lower their risk of poor outcome to that of non diabetic patents with BC. But she said this was not a reason for my mother, who is slim and not at risk for diabetes, to take it. I asked Mr Harries the same question and he said the following:
"I would not advocate it outside of a trial unless the metformin was indicated anyway eg for impaired glucose tolerance or metabolic syndrome or diabetes.
Aspirin:
She said there have been some encouraging observational studies suggesting that aspirin does prevent recurrence of early-stage breast cancer. However, what is not know is the dosage that has this effect. Thus the huge "Add-aspirin" trial recruiting at the moment, with results probably quite a few years away. On being asked the same question, Mr Harries said: We are recruiting to that trial which randomises patients to one of two doses or aspirin or a placebo. Flora's mother might be eligible for the study.I suspect it is open in Oxford too.
Outside of trials, as the role of aspirin is uncertain, I am not routinely recommending it for people just for this indication.
Having said that, the risks of taking 75mg per day are low and there are some other health benefits.On this basis, I think I am going to ask again (following chemo) if my mother should take at least 75g of aspirin a day. There definitely seems to be something here...
The only other thing that came out of our consultation is that my mother should get genetic testing to see if she has the faulty BRAC-1/2 gene. This suggestion came about because my mother mentioned that her sister, my aunt, had had a melanoma aged 75 despite not being a sun-bather. Our doctor looked interested at that point and said that having the fault in this gene can lead to increased likelihood of TNBC and melanoma. She very much advised that we look further into this. Obviously that has made me worry a bit, but I suppose I'd rather know than not know.
Anyway, I hope this is helpful. We have certainly leaned an awful lot in a short space of time!
Any advice in the run-up to chemo would be most welcome. We know my mother has to visit the dentist and get flu/pneumonia shots.
I hope everyone's having a good day today. It is a bit cooler here, and I'm enjoying having the house to myself and pottering around the garden before collecting my 4 from school later!
Flora x
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Hi, Sylvia
I did follow the link you posted, to "Litfield House". That looks like quite a place, I don't know of anything like it around here. The doctors at Litfield House seem to cover about everything except internal medicine, very impressive. And it's nice to know the docs who helped through your cancer treatment are still practicing not very far from you.
When I had my varicose veins treated, it was started before cancer and treatment. My great saphonous veins are gone, they were treated with laser and injections. My right thigh was then treated with injections for the visible varicosities, and then the left thigh in the same way. All was going well, they would just do a part of the leg at a time, with small injections and frequent visits. Then TNBC happened, and after chemo was over, maybe a year later, I went back to have the calves of my legs done. They started with the right calf, and it was treated very differently, instead of very small injections over several visits, he put in two large injections in the same day. I had strong pain and a lot of swelling in the ankle, which I had never had in previous treatments. When I complained, he really brushed me off, and I felt he treated me as just a complainer. He said there was nothing he could do about it. It took about a year before the pain in the ankle went away, I also had a vein higher in the calf that had a 2-inch line of dark, dead blood cells in it; that has slowly faded over the 3 years since, but is still not completely gone. I have never been back to him after the last visit when he was, I felt, very brusque and to the point of being rude. My left ankle still has not been done and does have a medium amount of reflux, but I will not go back to this particular doctor.
I do suppose one of the good things about being in this generation of "over 60s" is that there are more docs around who are treating these problems. The problem here where I live is that of having to often travel to a larger city to have the consultations and treatments.
I always thought that the reason TNBC is called aggressive is because of the speed at which it grows. The tumor I had did not show up on a mammogram in September 2013, and was not felt at gynecology exam at the end of December 2013. Then was diagnosed a month later in January 2014 at 2 cm and 2 lymph nodes compromised. In contrast, I heard a friend's story; she was diagnosed about 25 years ago with ER+BC. Before that, her doc had seen a spot on a breast and watched it by mammogram for over a year, and finally decided to treat it. It had slowly grown into a malignant tumor. She was put on a chemo regimen but couldn't finish it, she has neuropathy but is now a vibrant 85 year-old. At any rate, that's all I know about why TNBC is called aggressive, I was told when I was diagnosed that I had an aggressive cancer.
Our weather is still hot, Monday was sticky-hot, and I got overheated and have been sickly the last 2 days because of it. I really have to be careful in this weather, it really takes me out. We did have some rain, which is why it became so humid again.
I hope all the hoop-la will calm down for you. I notice there is a lot of disfavor of President Trump in your country, but I noticed when I was in Europe that all the media spout off about him all day long, so that's really all anyone over there knows about him. I also read that while the queen met with him the rest of the Royal family snubbed him. But that's okay, we are not all that impressed with royals anyway. Although, speaking for myself, I do find history of British royalty and British in general very interesting. The other day I read that while it seems as if the Vikings died out, they really were absorbed into the Scandinavian countries and also Britain and Normandy. Normandy means the land of the Northmen.
So I hope to feel better today, I just had some breakfast which is already an improvement on previous days, we'll see how it goes. I am not a fan of this hot and steamy weather, we are supposed to be getting a little break in it today.
I have only been gone from the thread for a couple of days and I see much has happened, and Gina is back.
Talk to you soon, love, Mary
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HI, Gina!
I am very happy to hear from you, and very sorry that you are having to deal with a recurrence in the same breast. How distressing that must be, and now you are waiting for a scan on your chest and abdomen. I wish for good results from this scan and hopefully you can deal with this chest wall tumor and move on.
I understand about your internet problems, I hope that gets installed soon.
With all that said, it is still so good to hear from you again, and I hope your family is all doing well.
Many of us who remember you are still here, and we are here for you. Let us know what happens next.
Talk to you soon, love, Mary
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Hi, Susie
I agree with you about the Filgrastim, I had it after every chemo treatment. After my first dose of chemo my white-cell count was so low I had several of the shots at a lower dose. I did not have as easy of a time as you, I found it to be a step beyond grueling!
I do agree with you wholeheartedly that 73 is not old, and treatment should not be denied because of that.
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Hi, Flora
Isn't it amazing how much you have learned, which by the way, are things you never wanted to have to learn? It is a world unto itself, this place of having cancer.
It sounds as if you had a good second opinion, good in that your mother is being treated as an individual and not being sent off only because of her age.
I had read of the bisphosphonates being used for cancer patients, with some success. This drug is normally given for the treatment of osteopenia, and osteoporosis, which conditions can be worsened by chemotherapy. I'm sure they would test your mother for bone density before dosing her with that.
Doctors are often cautious about prescribing drugs for conditions they are not intended for; thus, while I have heard that metformin can help in preventing a recurrence of BC, it is probably not easy to get a doc to prescribe it unless one has diabetes. And that perhaps makes sense, because if one is diabetic, it is more likely to have a recurrence show up, I believe.
I have heard about the low-dose aspirin being possibly beneficial too, that seems an easy one to get around. It is easily available, I have a bottle in my supplement drawer, but don't take it regularly. Sylvia and I both follow the blog of Chris Woolams, he writes about alternative options, supplements and foods Rainbow Diet) for taking before, during and after cancer, with or without chemo. He has spoken well of both metformin and low-dose aspirin but I would have to look back to see what he says about bisphosphonates. This is a bit more controversial, I would think, unless one has a bone problem.
I had the BRACA gene test, too, it came up negative. That test is optional, the gene tests are helpful for other family members, if as you say, you want to know.
Before chemo, yes to the dentist visit and probably vaccines if you can get them, I'm sure she will be getting a pneumonia shot. I know I am being pushed to get a pneumonia shot now because I am the magical age of 65! Also, be talking to your mother about the importance of nutrition throughout chemo, I did lose my appetite and lost over 15 pounds during chemo. I also lost muscle mass, and most of my strength. Everyone is different; our friend Sylvia did not lose her appetite and kept up her healthy eating, and she came through it all well. Be prepared, if necessary your mother may need different foods to eat than she is used to eating if she loses her appetite, it will be a learn-as-you-go process.
You certainly have your hands full with four children and also you take such good care of your mother, you are amazing. Please take care of yourself as well, and try to take deep breaths often, I find that helpful if I feel myself getting anxious.
I will talk to you later, love, Mary
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Hello CocoonCat,
I was glad that you liked the rose.
I do hope that all will go well tomorrow when you have paclitaxel (Taxol) number 10. I was sorry to read that you are starting to feel unwell but please remember that with chemotherapy side effects do build up and you tend to feel more tired and under the weather. Just keep looking forward and this will soon be over.
I know that generally patients seem to have more problems with the taxanes so I was wondering how Taxol compares to carboplatin in this respect.
I am trying to build up more information on the thread with the newer drugs so I was wondering whether you have had any particular side effects from the carboplatin. When you had the two drugs last week were they given separately or together? I was also wondering whether you had been told or whether you had asked why you were having carboplatin added to your chemotherapy treatment. It is only by asking about these things that we can get more understanding.
I do hope you will try hard to boost your morale. Tell yourself that you are doing well to get through chemotherapy and this is probably the biggest challenge in the cancer treatment.
I was looking at your details under your signature and I saw no mention of surgery. Are you having the chemotherapy first?
Remind me about the lymph nodes and why it is obsessing you so much. All you can do is keep looking forward and being positive and telling yourself that at the end of it all you will be no evidence of disease (NED). That is where everyone wants to be.
Looking back and having any kind of regrets will serve no purpose. In life we have t deal with each day and look forward.
I do hope your weather will improve soon.
Thinking of you.
Love.
Sylvia xxxx
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Hello Flora,
I was glad to know you liked the rose. I can see it in the grounds here from my lounge window and it makes me feel peaceful inside.
Susie is right about chemotherapy. Everything may be easy going for your mother and if there are any problems they can be dealt with.
Has your mother now made a definite decision to have chemotherapy? If she has, she now needs to know the drugs that she will have and she should ask why those particular drugs have been chosen and will she have them weekly of three weekly?
Take thing calmly and make sure she has a flu jab, pneumonia jab and a dental check up. She will not be able to have dental treatment during chemotherapy.
I agree with M that she should also have a bone density scan (DEXA scan) to ascertain the state of her bones before chemotherapy.
During her treatment she needs to keep well hydrated, take gentle walks, avoid stressful situations and keep looking forward.
I was told to avoid crowded situations, people with colds etc. and not to eat salad foods or shellfish.
We shall all be interested to know what you are now being told to do and not to do.
The chemotherapy doses will be measured according to your mother's weight and height.
Before each session of chemotherapy your mother will need to have a blood test to make sure everything is fine and she is alright for the chemotherapy session.
Thank you for putting the information about bisphosphonates, metformin and aspirin. They have all been discussed at great length on various threads, but it is always good to refresh. Each person will make up their own mind. I would not touch any of them, but that is my own personal opinion because I believe that all drugs have side effects and that there are no exceptions.
During chemotherapy I kept myself well by eating regular healthy meals. I did have quite a lot of home made vegetable soups and put turmeric in them but on the whole I kept to my usual eating patterns.
I was interested to read that your mother was told that she should geet genetic testing to see whether she has the faulty BRCA1/2 gene. I did ask about it and did have an appointment with a genetic nurse but she told me I did not need to be referred to a genetic consultant. I was nearly 63 when diagnosed and she said that these genes were usually found in much younger women. I think the testing may be easier to get now.
My information about melanoma skin cancer is that it does not necessarily come from exposure to sun and can appear on parts of the body that are not exposed to the sun.
One of the problems with all these suggestions is that it can cause more worry. You worry about having the tests, then you worry while waiting for the results and if there is a problem then you worry some more. If you do not have the tests then you worry that you have not had them!
In your mother's situation I would think it is prudent not to get into overload. If the decision is to have chemotherapy just deal with that. Make all the preparations that are needed before you start and then just concentrate on the chemotherapy sessions.
That is about all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you so much for that really interesting post. I do value you so much on the thread and appreciate your dedication to answering everyone. I am going to take a break right now but I hope to get back either this evening or tomorrow.
Love.
Sylvia xxxx
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Thank you everyone for your helpful posts and advice re: chemo. Wow, this is THE place to get information about TNBC!
Sylvia, thank you too for talking about not letting my mother get overloaded. It is very pertinent advice. She is definitely feeling a bit like that at the moment, and I have to force myself to back up a bit sometimes rather than deluging her with too much information.
Yes, we have decided that she is definitely going to have chemo. I understand they will start with EC and continue with pacliotaxel (sp?) I don't think they are using carboplatin-does anyone know why some doctors use this? A new area of investigation for me..
Hello Cocooncat-and I'm sorry to hear your morale is low at the moment. Don't beat yourself up about this-morale being low, I mean. It would be strange if it wasn't from time to time. My mother is yet to go though chemotherapy but I imagine there will be many days of morale being low. Do you have any psychological support available - it might help with the "what ifs" regarding not finding the cancer earlier.
There is a good deal of luck involved in finding cancer early or later- a lot depends on how seriously the doctor takes it and the vagaries of whatever medical system you're under.
I suppose one way of thinking about your situation is: yes, you have a TNBC with lymph node involvement but there's never been a better time in history to have a TNBS with lymph node involvement!
TNBC is an area of frenzied research, and, even if the cancer does come back and you get to stage 4 (which is presumably what you're worrying about with the concern about lymph node involvement) there's never been a better time in history to have Stage 4 TNBC! And, compared to other breast cancers, my understanding is that lymph node involvement isn't such a strong prognostic factor in recurrence/survival of TNBC. Some with node-negative tumours get recurrence; some with small tumours get recurrence; some with positive nodes get recurrence and some with larger tumours. And many get no recurrence..
Anyway, I hope you can focus on the end of the Taxol , and how your chances are that much better having done it.
Take care,
Flora
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Flora,
Thanks for the big update.
I have spent years being advised by doctors to take a low dose of aspirin, then being advised not to take it a couple of years later, then take it again! Enough to drive you mad. I shall ask the oncologist when I finish treatment, which should be in September.
Regarding tiredness, etc. I find that I do an awful lot of yawning but don't actually lack energy, except for a few days after my first Taxane infusion. Gentle exercise helps maintain energy levels. I even got back to my Pilates classes until this ridiculous heat made them too uncomfortable. What I would give for a swim, but no hope of that with a PICC line.
Too much information can be overwhelming. When I saw the oncologist after my surgery she gave me pamphlets to read about the two lots of chemo drugs and they frightened the life out of me and almost made me decide not to agree to it. It's a bit like learning any new thing, I think: like a new computer operating system -- get the basics, use it for a while, then read the manual to fill in the gaps.
Ah, well. Second dose of Taxane tomorrow afternoon. I shall know what to expect this time.
Mary,
Sorry you had such a rough time with chemo. Whenever I ask the head chemo nurse what to expect from something, she says that it's impossible to tell how any given patient will react.
Filgrastim also has a long list of side effects, which I wished I hadn't read! But I've not been aware of any of them except the occasional throbbing in the small of my back at the end of the 8 days of injections.
Susie
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Mary,
you say 'Doctors are often cautious about prescribing drugs for conditions they are not intended for'. In the UK, drugs are licensed only for specific conditions and NHS doctors aren't permitted to prescribe them for anything else, except under trial conditions. My husband joined a trial a few years ago to see if a certain Diabetes drug would help stave off dementia. He had to drop out of the trial when he was diagnosed with terminal cancer and they were round like a shot to collect any left-over drugs.
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Hello Mary,
Thank you for your latest post. Thank you for looking at Litfield House. It does look quite impressive and they have a lot of doctors working there. I just went there once to see Dr Nicola Hembry for a consultation about nutrition as I was interested in what she had to say. Private consultations are quite expensive but they are quite long and thorough. I did not feel I needed any further consultations and could not have afforded them.
I did stay with Dr Thompson for five years but that was on the NHS and with the approval of my breast cancer consultant. I went to see her periodically and also had telephone consultations. I felt she really got to know me and help me. I am not surprised that she has gone into private practice because orthodox medicine is so against homoeopathy and alternative treatment. I used to have to go to Bristol which is a big city and 80 miles from Exmouth. It is in the county of Avon.
I read with great interest all that you wrote about your varicose veins treatment. It all sounded very complicated to me. I did not like the sound of your doctor and I certainly would not have gone back had it been me.
I think the treatment may be easier now but I am not sure. According to that vein book, by Professor Whiteley, he talks about minimally invasive venous procedure and it sounds as though you have it done in his surgery and then walk out. You will have noticed that Professor Whiteley is part of the set up in Bristol. Does it all sound too good to be true? I do not like the staining that has appeared on the bottom of my legs and my GP has told me that the NHS does not offer any treatment.
I am doing this post on Thursday afternoon and it is still too hot and dry with no sign of rain. It has been like this for about seven weeks now and it has been hard work trying to keep the flowerbeds in the grounds from drying out. It is such hard work.
The heat has really been getting to me lately and Raymond's allergies have been bad.
The politicians will be going home for their long break soon so at least we can get a break from all their hysteria.
I tend to make up my own mind about situations in the news, and do not take much notice of what our newspapers say. At the moment in the UK I feel we have the establishment against the ordinary people of this country. We are rather an archaic staid country and we need pushing into the 21st century. The media love to demonise those leaders who do not fit into the conventional mould and have a mind of their own.
I would think that Donald Trump would have been bored stiff with the 'Royal entourage'. They are not the sharpest knife in the box and I have no time for them. I think we should be a republic and have an elected head of state.
Like you, I do find past British history interesting but it is all about bullies and victims. What I cannot understand is that our parliament still abides by clauses brought in by Henry VIII. What relevance can that have now?
I do hope you are feeling better today and I was glad to know you have been able to eat some breakfast.
It has been pretty active on the thread and you never know who is going to reappear. It is quite nice to get surprises. I do wonder whether Peter (of PeterandLiz) will pop in. He always has something interesting to say. I do wonder. Too, about Michael in Northern Ireland (Chatterbox). I was wondering whether Gina had kept in touch with the lady from Singapore. She was from the Philippines but living in Singapore.
I do wish people would say goodbye to us when they decide to move on, instead of just disappearing.
Take care, Mary, and look after yourself.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for your latest post. I need to take a break now but I shall try to post later on.
Thinking of you.
Love.
Sylvia xxxx
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Hello all of you. My mother is really better they attention Heredia is more.fast. she has for its treatment a plow that does not form. squares or thrombi.
I have been to many places in Sweden and Norway. they are really beautiful tranquilos.y very civilized these countries. I do not have wifi all the time so I do not enter the internet Any time.
Al so i write this mesage many times And can no go.
Abrazos. Las pienso mucho y deseo lo mejor para cada una
Marias
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Here 
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Hello Marias,
It was a very pleasant surprise to find your post on our thread this evening.
I was so happy to have some news of you.
I was glad to know that your mother is much better. I did not understand the English that you wrote to describe her treatment. It did not make much sense in English. What is important is that your mother is much better.
I was interested to know that you have been to many places in Sweden and Norway. I went to these countries many years ago and really liked them.
I understand that you do not have wi-fi all the time and that you have had trouble trying to send messages to us.
We have been wondering about you and hoping all was fine with you. Try to keep with us.
Abrazos.
Sylvia xxxx
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Hello Marias,
Thank you for the photograph. It looks very peaceful.
Abrazos.
Sylvia xxxx
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HI, Sylvia
Litfield House looks very impressive, if I lived anywhere around there I would check it out.
In reference to the treatment of my varicose veins, they did call my treatment minimally invasive and it was an in and out process. They did insist on the wearing of very expensive support hose for at least a week after each treatment.
This timing is very odd, since I just sent that message to you on Wednesday of this week. Yesterday afternoon I got a phone call from one of the nurses who worked at the Vein Clinic where I was treated. I liked her, she was always good to me. She was calling to tell me that the doctor who was very unpleasant had gone on his own in a private clinic, and no longer was in partnership with the larger Medical Clinic nearby. She, and 5 other nurses had stayed on as employees of the larger Medical Center, and they were working for another vein doctor in a new Varicose Vein Clinic there. She asked how I was doing, I told her about my ankle wound, and my slight swelling, and brought up the fact that my left lower leg had not been treated.
I also brought up the subject of leg staining, I told her I had a friend who was getting the leg staining and didn't like it. She said that once it's there they can't get rid of it but treatment can help it from getting worse. I don't know if that's true or not, I told her I would think about coming in for a consultation since I do have questions. If I do go in, I will certainly get more information about the staining. Also here the treatment is covered by insurance but the expensive stockings are not.
Yesterday I did some canning, my brother has too many tomatoes as usual, so I took a big lot of them and canned some in chunks, and with some I made a big pot of marinara sauce with basil and garlic, and canned that. While I was doing that I put computer on LBC UK radio, and finally heard Nigel Farage's program. Yesterday the show was all about the rising crime rate in the UK, and it seems the police are not much help. Apparently a very large number of people never report crimes because they think it won't do any good. Farage thinks it would be a good idea to arm police with guns again; I can see how it would be very one-sided to have only a baton while the criminal has a large knife. As usual, I found the advertising entertaining, it is much the same as ours, just the products have different names.
I remembered the name of the young lady who used to come here, she lived in Singapore. Her name is Lou. I hope she is well.
I will talk to you soon, love,
Mary
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Hello Flora,
Thank you for your latest post. I do hope your mother will not have to wait too long before starting chemotherapy. The regimen that has been chosen for her is standard. Once the treatment begins you somehow settle into it and time goes by quite quickly.
I would think at the hospital they still do a pre chemotherapy check up. I certainly had one and a group of nurses seemed to be in charge and did basic things such as taking blood pressure etc.
One thing you might want to sort out is how the drugs are going to be administered. I had mine through a cannula installed in the top of the hand for each chemotherapy session. I had no problems but sometimes the veins can harden and it is difficult to find them to insert the cannula. There are other options such as a pic line installed in the chest area, I think. I have no experience of this but others may write in to explain it better. I have heard it mentioned that this pic line has to be kept very clean for fear of infection.
As I said, I had my six months of chemotherapy with a cannula and all went well.
I had my mastectomy surgery after chemotherapy and my oncologist suggested that I had a portacath installed above the breast on the non-surgery side at the same time as the mastectomy. She suggested this because she was keen on these things and also thought I might need some more chemotherapy after surgery. Fortunately I did not need any more chemotherapy after surgery. However, I had been told that the portacath could stay inside me for ever. What I was not told was that it would need to be cleaned out every three months. I went to the hospital the first time for this and all went well. I think they cleaned it out with heparin. When I went the next time the nurse could not get the heparin in. She said I would have to stay and get an x-ray. This I did but I can tell you I was none too pleased. The result was that the portacath had a kink in it and would have to be removed. I had to go into hospital and have it removed under general anaesthetic. I would not have had another portacath if I had needed chemotherapy. I was told it was most unusual for anything to go wrong but I was not convinced. I was glad to be rid of it.
I would not worry about the carboplatin. The medical teams know what they are doing and choose the appropriate regimen.
Keep in touch and keep your mother relaxed.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for your latest post. I do hope your mother will not have to wait too long before starting chemotherapy. The regimen that has been chosen for her is standard. Once the treatment begins you somehow settle into it and time goes by quite quickly.
I would think at the hospital they still do a pre chemotherapy check up. I certainly had one and a group of nurses seemed to be in charge and did basic things such as taking blood pressure etc.
One thing you might want to sort out is how the drugs are going to be administered. I had mine through a cannula installed in the top of the hand for each chemotherapy session. I had no problems but sometimes the veins can harden and it is difficult to find them to insert the cannula. There are other options such as a pic line installed in the chest area, I think. I have no experience of this but others may write in to explain it better. I have heard it mentioned that this pic line has to be kept very clean for fear of infection.
As I said, I had my six months of chemotherapy with a cannula and all went well.
I had my mastectomy surgery after chemotherapy and my oncologist suggested that I had a portacath installed above the breast on the non-surgery side at the same time as the mastectomy. She suggested this because she was keen on these things and also thought I might need some more chemotherapy after surgery. Fortunately I did not need any more chemotherapy after surgery. However, I had been told that the portacath could stay inside me for ever. What I was not told was that it would need to be cleaned out every three months. I went to the hospital the first time for this and all went well. I think they cleaned it out with heparin. When I went the next time the nurse could not get the heparin in. She said I would have to stay and get an x-ray. This I did but I can tell you I was none too pleased. The result was that the portacath had a kink in it and would have to be removed. I had to go into hospital and have it removed under general anaesthetic. I would not have had another portacath if I had needed chemotherapy. I was told it was most unusual for anything to go wrong but I was not convinced. I was glad to be rid of it.
I would not worry about the carboplatin. The medical teams know what they are doing and choose the appropriate regimen.
Keep in touch and keep your mother relaxed.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post and for all that information about vein treatment. I was very interested to know that you had had the minimally invasive treatment. I thought it must be available in the US because I feel the UK is always lagging behind with things medical. I know that Professor Whiteley first started doing this minimally invasive procedure in about 1998, but according to my GP on the NHS varicose veins are not dealt with unless you develop venous ulcers. This seems quite mad to me since venous ulcers represent the last stage of venous reflux. They also seem to think that the varicose veins are the problem when in fact according to that vein book I read they are the visible sign of the underlying problem of venous reflux and stage 1 staining and stage 2 ulcers. The varicose veins form to try to deal with the underlying problem of the inflammation that is caused by venous reflux.
I did not realise that with the minimally invasive procedure you had to return for treatment quite a few times to deal with different parts of the leg.
Thank you for the information about the staining. I shall be very interested to know if you learn any more if you do return.
The GP I saw was quite flippant about the staining and said to do nothing or wear compression stockings if I wanted. I have been doing my own research and have discovered it is most important to put moisturising cream or ointment on several times a day. I found an article entitled "Nursing Practice – Review Wound Care" The article was entitled Diagnosing and treating venous eczema and was very easy to read and understand.
I also found an NHS article on Varicose eczema at www.nhs.uk/conditions/varicose-eczema.
1. Overview.
2. Treatment.
My varicose veins are not that bad but obviously there is something wrong with the valves inside, otherwise I would not be getting the staining.
All this has happened since I had the lymphoedema last October and I do know from that up to date book, Let's talk lymphoedema, that there is a connection between lymphoedema and varicose veins. It is probably damaged veins done at the same time as damaged lymph. The two are very close in the body.
You are lucky to have all those tomatoes. You will not be short of lycopene, which is supposed to be a cancer protector.
I was interested to know that you had managed to listen in to Nigel Farage on LBC. I listened to some of that as well and we seem to have become a crime-ridden country. There have been too many cuts in services. Nigel Farage is on from Monday through Thursday at 7 pm our time and he gets a lot of calls. He is also on Sunday morning from 10 am to 12 noon our time.
Thank you for reminding me of the name of that lady, Lou.
I have had two nice surprises this week and they are the reappearance of Gina and Marias. These two ladies are going through a lot.
I also had a big shock yesterday to learn that an elderly lady in the area was diagnosed with breast cancer. She is in her nineties.
Have you any theories on the novichok poisonings? I sometimes get the impression that this is a badly constructed detective story. Where have this father and daughter disappeared to? As for the other two, I do not know what to think.
That is all for now. I am glad it is Friday evening as I feel tired from all this heat and lack of rain. I would like it to rain all through the weekend and to find the grass in this apartment complex green again.
Love.
Sylvia xxxx
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Hello Flora,
For some reason my post to you seems to have appeared twice.
Fond thoughts.
Sylvia xxxx
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Flora,
I have a PICC line. It was put in just above my right elbow and then it goes through to somewhere near the chest. It took 30-40 minutes to put in, not much discomfort. Then I had to go for a chest x-ray to make sure it was in exactly the right place. That was three months ago and I haven't had a sniff of infection. The line has to be flushed and the dressing changed once a week to keep it clean and ensure that there is no chance of blood clots. It has to be kept dry. I was told to put cling film on it in the shower but recently discovered that you can buy a sort of polythene sleeve for it for a few quid. I'm not bothered as I prefer a bath and just keep my right arm out of the water. Not only does it allow easy infusion of the chemo but it's also used to take blood before each session so you don't have to have the needle each time.
It's coming out in three weeks after my last session. A few days to heal right up then swimming pool here I come!
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Incidentally, does anyone know about donating blood after cancer/chemo (after a suitable interval obviously)? Googling suggests that they won't allow it, which is a pity as I am O negative and keep hearing on the news that it's in short supply.
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hi everyone
Hope u are all well? Bit of a dark day today! Feel well but start to freak about my mammogram and it’s not due yet for another month. Imagining all sorts of things with my aches and pains today and I know I’ve had most of them way before diagnosis.
The realist in me knows that and that I wouldn’t be as well if there was a problem but still I think too hard and google! My mind is my worst enemy!!!!!Off to Melbourne on Thursday and really looking forward to getting away again. I think living in a small can be good but I think it’s contributing to my PTSD.
Hope everyone having a good weekend and enjoy ur summer days! I can’t wait gir winter here to finish!
Much love
Kat
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Hi All,
I hope everyone had a good week and enjoying the weekend.
It has been a busy week for me with appointments. I had a consultation with a radiation oncologist and also had a ct scan and measurements for radiation. I was given four small tattoos on my chest and breast area (ouch!) to help locate the precise area to be radiated. I am scheduled for 15 whole breast treatments beginning July 30th and ending August 17th.
Flora- it seems as though a plan is coming together for your mother’s treatment. I remember being overwhelmed with visits to different oncologists and hearing different advice and answers to my questions. Finding a team I was comfortable with was reassuring, and once treatment actually started, I felt much less overwhelmed.
During the first part of chemo treatment (the stronger “AC” infusions) I felt “out of it” and slept a great deal during the first week ofeach cycle. It seemed I only woke up to eat, drink, and give myself an injection in my stomach to help with WBC. The second week I was more alert and added short walks to my days. This went on for 4 cycles.
The 12 weeks of Taxol (taxane family) was harder on me only because I was more alert mentally and physically, but emotionally I was exhausted. And when neuropathy set in around Taxol number 9, I was just ready to be done. My blood tests came back good every week, and for that I am thankful. But the little side effects (and the big one-neuropathy!) can be draining. So when I am asked about my chemo regimen, I have to say it was hard...but doable.
I better close for now. I babysat my 18 month old granddaughter last night, and my house and backyard is now upside down. It is amazing how one little creature can make such a mess! She is so much fun but oh so active.
Xoxo
Monica
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Thank you to Susie for your recommendations re: things like Picc lines and filgrastim. I hope you get some answers re: donating blood. It sounds as thought you're nearly there on your chemo, unless I've misunderstood the time-line? I can hear you're longing to go swimming! I love it too!
Monica, thank you for your kind words and for your clear description of how chemo left you feeling. My mother will be getting EC rather than AC - I think they're pretty much the same?And then the taxmen, so the same order as you.
She's currently on the pre-chemo conveyor belt, visiting the dentist, getting the pneumonia jab and organising the genetic testing (I'm still feeling rather nervous about that naturally!) Also rather unnerving is the news that there is no flu jab available until September, either on NHS or privately. Her oncologist didn't seem to be too worried about this, and said she could just have it in September then - but, since her chemo is starting in a few weeks' time, we can't help but feel a little unsettled. Did anyone else have this problem?
One more question: does anyone else take turmeric supplements, in particular Theracumin, a version whereby the curcurmin element of the turmeric is more concentrated and bioavailable. My understanding is that many consider turmeric to be helpful in reducing cancer, but that, in its normal form, it is poorly absorbed into the body, hence attempts to make it more absorbable-and Theracumin. Maybe I'll ring your homeopathic doctor and ask her, Sylvia..
Hope everyone is well. The weather is fractionally cooler here in Oxford this weekend. My husband has just taken all 4 children to our local "junior park run" - a 2 km run for 4-14 year olds. He was keen but they were understandably reluctant! But the prospect of pains au chocolat all round afterwards convinced them. Oh, trying to get our children to exercise is hard!
love
Flora x
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