Calling all triple negative breast cancer patients in the UK
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Hi Michael,
Just to say I will be thinking of you and Janette on Monday. Hopefully it will be in the Lakes as I am going on a visit home today. It is a place full of wonderful childhood memories and you will be in my thoughts.
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Hello linali
I was so thrilled to see you back on the thread. Thank you also for your PM. I shall answer it later on today when I have more time to sit and do it in a relaxed way.
As you know, I am very fond and proud of my three women from Ireland. You, Bernie and Mumtobe (Carol) are all very special and you have all been through a lot.
Talk to you later.
Much love.
Sylvia xxxx
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Hi linali
Thank you for your kind thoughts
Michael
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Hello Michael,
Just popping in to say I shall be thinking of you tomorrow on Janette's birthday and hoping all goes well. I hope also that the coming week is a good one for you.
Best wishes.
Sylvia
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Hello sam52,
I hope all is well with you. I still have not had my parathyroid hormone level results and I shall make a last attempt tomorrow to find out why.
I was talking to a friend of mine who has a holiday home here, and she told me the results of her DEXA scan to check on her osteoporosis. Hers has got worse and she has lost another one and a half inches of her height, a total of four inches in all. She has been on a bisphosphonate for seven years and the doctor had taken her off them a few months ago. It is not saying much for these drugs. I have read that they stop new bone from forming, so your bones appear hard, but are in fact are brittle and more likely to break. I do not know what the answer is. I shall just carry on as I have done since the diagnosis of osteoporosis and hope to keep everything stable.
My friend did tell me that she had had a hysterectomy at forty and was put on HRT for a while but was so ill she had to come off them. She thinks her osteoporosis is bad because of the loss of oestrogen at a relatively young age. I told her I thought that it was good she had had to come of the HRT because of its association with the risk of developing breast cancer.
I do hope that you will have your results soon.
The weather is again bitterly cold here and now it I getting very windy.
My ankle is a lot better but I think I am going to have to do less standing in the grounds and so not so much gardening.
Hope to hear from you soon.
Love.
Sylvia xxxx
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Hello JennUK,
I was wondering how you are getting on up in Scotland. Has your treatment been sorted out and have you begun your chemotherapy?
Thinking of you.
Love.
Sylvia xxxx
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Popping in now to say hello to our lovely Australian women, Liv and Lolalee. I hope you are both doing well and that the week ahead will be kind to you. Please send us some of your sunshine!
Love.
Sylvia xxxx
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Switching to South Africa now, to say hello Carolben. I do hope you have had a lovely weekend, doing all the things that you enjoy and that the coming week with your chemotherapy treatment will not be too harsh on you.
I have a friend starting her last week of a four week holiday in South Africa, staying with friends who live there. She will go into shock when she comes home next week as it is bitterly cold here and she really feels the cold.
Thinking of you and sending fond wishes.
Love.
Sylvia xxxx
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To the US now and to say hello to our fine group of American women.
FernMF. I hope you continue to do well post treatment.
InspiredbyDolce. Thinking of you and the surgery you will have on March 13th. Thank you so very mush for all your great information and research and hoping you will continue to enlighten us all with this.
PeggySull. Thinking of you as you get near the end of your chemotherapy treatment that I think finishes on March 11th. I hope you are not suffering too many side effects.
Placid44. How are things going with you? I know you had eight weeks AC and twelve weeks Taxol. Has that now finished? Have you begun radiotherapy?
I think you mentioned in one of your posts that you were 70% k67. Can you explain to me what that means please?
To our two American women living in Germany, susaninicking will you still be starting chemotherapy on March 6th? If so I do hope all goes well. To Cynthie, have you now got a treatment plan? I hope all goes well with you as well.
Love.
Sylvia xxxx
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Popping next door to Canada now to Adagio in Vancouver. I think that you are probably still going through chemotherapy. How are you feeling and how are you getting on? I do hope we shall hear from you.
Love.
Sylvia xxxx
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Hello everyone,
I do hope I have not forgotten anyone. If I have, please pop in and remind me and let me know how you are doing. I do hope everyone posting and viewing will have a good and meaningful week ahead.
If there is anything you would like to bring up as a topic of conversation, please do not hesitate to post.
In the UK you should all be concerned about what is going on in denying chemotherapy treatment to older patients. Who knows where this can lead. I consider full and proper health treatment to be a basic human right. We are also being told in the UK that we are way down the list for good cancer treatment and that we are not being checked enough through scans as part of our treatment. I think we know that CT scans, MRI scans etc. are fraught with problems but is the risk worth it? What are your thoughts?
On bc.org I read that more and more young women between the ages of 20 and 39 are being diagnosed with metastatic breast cancer. I am wondering what is causing this, as we are often told in the UK that breast cancer is a disease of older women because of the time it takes for cancer cells to mutate into a full grown tumour. Have you any ideas about this? An interactive discussion would be useful.
That is all for now.
Love.
Sylvia xxxx
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sylvia - thanks for checking in on me. I just had my very last taxol two days ago and I must say I am very happy to be finished with chemotherapy treatments. Having said that I am very aware that the effects of the chemo in my body will go on for years to come. I sure hope the damage is not too bad - I do consider chemo a risk in and of itself, but if it works to kill off the rogue cancer cells, then perhaps the trade off is worth it.
I go for my CT imaging on Tuesday March 5th in preparation for radiation. So in a few weeks time I will start on a new journey into the unknown realm of radiation therapy. Breast cancer is a long arduous path for all of us.
Glad that your ankle is feeling much better now.
Am I correct in recalling that you took iscador? What are the benefits of this?
Thanks for all your encouragement and wealth of information.
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Hello adagio,
Thank you for your post. I was so glad to know that you have finished your chemotherapy treatment with Taxol. I can understand how happy and relieved you must be to have that behind you. Try not to dwell too much on any possible long term effects, because you may not have any. As you say, we all know that chemotherapy is risky treatment, but we have no alternative and it keeps us alive. All we need to ask ourselves is where we would be without it and I think that motivates us to have it.
I do hope everything will go well tomorrow when you have the imaging done in preparation for your radiotherapy treatment. Do you know how many weeks you will have? I found that the radiotherapy treatment went quite quickly as you have to go in every day and even though the daily treatment itself is quickly over, the days seem to fly by. Please post and let us know what information and instructions you are given in preparation for your radiotherapy treatment.
Looking back, I remember very clearly going in to the radiotherapy department to be placed on a prototype of the actual radiotherapy machine and being marked up very carefully. I also remember having a short interview at the time and being given a special smock to wear each time I went for treatment. I was also given a tube of cream to put on my skin after the radiotherapy and not to put anything on before. I was also told not to wash in Dove soap, because it had metal in it and of course not to use any deodorant, because of the aluminium. I quickly got into the routine of turning up at the radiotherapy department, waiting to be called in, usually very promptly, going into the changing room to put on my smock and then going into the radiotherapy room, being carefully placed on the machine and then the radiologist left the room, switched on the machine, and the treatment was swiftly over. I did not have any problems with redness or burn. I carried on normally and did not have the fatigue that some experience. Nevertheless, we should not take radiotherapy lightly. If I can help you prepare in any way, please let me know.
You asked about Iscador. Yes I did take it, on diagnosis and stayed on it for about three years. Please remember that I was prescribed it and did not just take it. I took oral Iscador and told my medical team that I was taking it and that my breast cancer consultant had referred me and others to the homoeopathic doctor who prescribed it. At chemotherapy they did not tell me not to take it, just not to have it in injection form because of the risk of infection. Iscador is made from mistletoe and is an immune booster in the treatment of cancer. It is used in Germany.
I was pleased to know that you find the thread useful.
I do not know how long you have been viewing the thread and whether you know about the charity Cancer Active. You can sign up to their free newsletter and get all sorts of information. Please remember that it is information and not advice. You must always go by what your medical team tells you. You might be interested in the article “20 things you need to know about radiotherapy” “20 ways to improve your Radiotherapy experience”. It is always useful to be informed before you start your treatment. Apparently lots of people are asking Cancer Active about how they can best prepare for radiotherapy and minimise the side effects. If you do read it I would welcome your comments.
That is all for now. I shall be thinking about you tomorrow.
Best wishes.
Love.
Sylvia xxxx
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hello all you lovelies...((((((hugs))))))
((hugs))sylviva sending you a little ray of sunshine to brighten your day.
hope you and your husband are well and you both enjoyed the weekend... not long the weather will be a bit kinder to you.
im feeling much better, still have scans this week and will find out tuesday week if ok. dont know why i felt so poorly this time, suppose we never do with this type of illness it could be nothing or it could be huge.crossed for the nothing.
just happy to feel sort of normal again. went out to lunch with friends today, food was pretty average, chinese but very westernised chinese, lots of fat and sugar, not authentic at all.
now gobbleing dow half a water melon, so fresh so light and Delicious
looking forward to tomorrow to get back to the gym and walking and a bit of yoga hopefully.
how are you (((carol & Ben))))? hope chemo is being as pleasant as it could dare to be.
(((mumtobe)), hope rads is not too trying, i found rads easy after initial chemo... it will all be over before you know it.
adagio - (((hugs)))hope all is going well for you. just trying to guage where you are up to by your signature.. is this right, you had surgery first and now are having chemo? looking back now i wish i had lots more chemo or different chemo's first then mastectomy then rads.
love and hugs to you all.
xxxx
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Hi adagio,
I started rads last week and so far I find them fine. Much easier to tolerate than chemo. I take a small pleasure in the fact that I leave rads the same as I went in and not high as a kite from steroids! It is much more prompt than chemo aswell, if my appt is at 10am then I am called at 10am and out by 10.10am. The first couple of appts take a bit of time but after those you really are in and out in no time. Be sure to not have put any cream on you up to an hour before your appt and put cream on straight after treatment to stave off rad burns. Meeting my RO tomorrow. Was released by my Onc last week, she doesn't need to see me anymore. Feel like the baton of health has been handed back to me, don't know how I feel about it. I wish my docs would do regular tests but they don't. I have asked for a CT and bone scan now though because I never had them before, waiting on a call from my nurse re this.
Hope everyone had a good weekend. The rain is back after a beautiful sunny, dry fortnight here!!
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Good morning Sylvia! I really like how you have the hellos grouped by countries! I can finally figure out who is where and keep track - that's awesome!
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Hello Sylvia and all.
Hope everyone's treatments are bearable and all are doing well.
I am still in Hong Kong and will be here until early May but will have a short break at Easter probably travelling to Hanoi or Cambodia, which is only about an hour and half flight from here.
The weather is warm and lovely, some sun but quite a bit of pollution as well. Not nearly as bad as Beijing however. Most of the factories have left Hong Kong and are now to be found somewhere in China. The wages and the cost of production here just made it unprofitable. Pity because all the lovely designer outlets have gone to China as well. In the days of Pan Am and GI's R&R this place really rocked. Shopping was second to none.
I have often thought the UK would be a great place to live if the climate was more conducive. Also being part of the aristocracy and being wealthy would be a pre-requisite that way you could holiday every month at some exotic location...to catch the sun....lol.
Meanwhile, we need to do what we need to do! Hope everyone has a healthy week.
Best wishes Lola.
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Hello all my wonderful women,
It is evening here and I have had a very busy day, so I just wanted to say that I am so happy to see the thread ticking along nicely, and I shall be posting tomorrow morning.
Love, Sylviaxxx
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Hello Sylvia
Thank you for your post.
It must be very frustrating, after requesting PTH testing, not to be able to get your results; I hope you manage to get them soon.
I had my DEXA scan today. On the form I had to fill in before the scan, there were questions regarding risk factors and also secondary causes of osteoporosis - both hyperparathyroidism and breast cancer were mentioned (among others).So I ticked both.Apparently the former necessitated an additional scan of the forearm - this was the first time I ever had this.I explained to the technician that I had had surgery for hyperparathyroid disease 2 (or was it 3?) years ago, and that hopefully I am now cured; he asked me was it hypo or hyper (groan....) and said that it was still necessary for my forearm to be scanned.I'm not sure he knew what it was all about....I was relieved, after what you said about losing height, to see that my height is still the same.
I was told by my rheumatologist (who had requested both blood tests and DEXA scan) to book an appointment to see him for results after I had had my scan; the earliest date they could give me was 2nd May - so I have a long wait to see if my bone density has changed. I do remember the surgeon who performed the parathyroidectomy telling me that improvements in bone density would not be fully realised until 3 years afterwards; I can't remember if it was 2 or 3 years now since we had our surgeries - but maybe that explains why your results do not show an improvement.
I am glad there is some improvement in your ankle; you must try not to overdo things in the garden.It was a beautiful,sunny day in London today; but unfortunately I spent most of it travelling to and from the hospital and at the appointment.Hoping to finish work on the allotment shed tomorrow after I get home from school - rain is scheduled again for Wednesday.
With love,
Sam x
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Hi Sylvia,
Can I ask you what follow up appts you had after finishing rads? For anybody finished treatment, same question applies....was released by my onc last week (a month after finishing chemo) - just wondering is this the norm? Also wondering what else she could do for me anyway being TN??
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Hello Liv,
Thank you for your post and for the little ray of sunshine. It is badly needed.
I was so glad to know that you are feeling much better. I do hope all will go well with your scans this week. What scans are you having since there seem to be about four different ones that anyone can have, CAT scan, MRI scan, PET scan and bone nucleide scan, not to mention an ultrasound scan. Let us know the results of the scans next Tuesday when you get them.
I think with breast cancer patients probably go up and down in how they feel. Remember you have already been through a great deal and now you are on Navelbine. In addition, you are taking Metformin. I have no experience of either of these drugs but I know from people with diabetes that some of them do not take to Metformin. We are all thinking of you, Liv, and wishing you all the very best.
It is good that you are living as normally as you can and that you are out and about with friends. I know that you have to be careful with Chinese food, not to mention Indian food. The westernised versions can be very junky and of course full of monosodium glutamate which is not at all good for you and makes some people very unwell.
I do hope you enjoy your session at the gym and some yoga.
Fond thoughts from this funny old country.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for your post. I was so glad to know that you liked the way I grouped the hellos by country and it is helpful for you. That is the way my brain works. I am a very tidy methodical person and I think my brain is full of tidy little boxes! I have been like it since I was a child.
I hope you have a very good week.
Sylvia xxxx
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Hello Lolalee,
Thank you for your post. It sounds as though you are having an interesting time in Hong Kong. I would be interested to hear more about it. Be sure to tell us all about your break in Hanoi or Cambodia.
The weather in Hong Kong sounds lovely but I would not like all that pollution. When I see all the pollution in China on the news here I tell myself there is probably going to be a lot of cancer there in the future. It is sad about all the factories leaving Hong Kong for China and since this seems to be happening world wide I do wonder where it will all end.
Here in the UK our politicians have allowed our manufacturing to collapse in the name of cheap labour and big profits for businesses. Practically everything you pick up here has Made in China on it and the quality is not good. We have loads of clothes shops, all selling cheap junk, that falls to bits after a few washes and wear. We used to have quality tailored clothes made mainly in the north, but also around London. Most of that has all but disappeared and the whole of the north is quite impoverished now that the textile industry has been destroyed. I like tailored trousers, jackets etc. and nice blouses, but looking for these is like looking for a needle in a haystack. People here, on the whole, look very scruffy.
Despite our awful climate, people do seem to like living here. Because of the European Union, made of twenty seven countries, we have free passage of goods, services and people. It has caused a lot of problems and we are an overcrowded little island with a cosmopolitan population. In some places you can feel foreign in your own country. With so many people being allowed in we have problems with the health service, schools, transport and housing.
I understand how if you came to the UK you would need to be wealthy and part of the aristocracy so that you could pop off in your private jet or big yacht to catch the sun in foreign climes. It is good to dream!
Have a good week.
Love.
Sylvia xxxx
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Hello Mumtobe (Carol),
It was so nice to hear from you and I hope all is well with you, husband and baby Emma.
You asked about follow up appointments after I had finished radiotherapy. Yes, I did have follow up appointments and I am still having them. I was surprised to read that your oncologist had said she would not be seeing you any more.
After my radiotherapy, which signalled the end of my standard treatment, I had a CAT scan and a bone nucleide scan to check that all was fine.
I was then told I would have check ups every three months for two years, alternating between my oncologist and my breast cancer surgeon. This meant that in one year I saw the oncologist twice and the breast cancer surgeon twice. These check ups were basic physical check ups with the oncologist or the breast cancer surgeon examining with their hands the area where I had had a mastectomy. I asked them what they were looking for and was told that when they ran their hands over that area they were looking for it all to be smooth, which would be a sign that all was OK. They also looked for any sign of a rash in that area and especially along the line of the mastectomy scar, as that could be a sign of recurrence.
They also did a routine physical breast check on the good breast to look for any sign of a new primary tumour or anything that might have spread there from the original tumour.
They also had me lift my arms in the air and had a good check on both sides around the area of the armpit. I think they were looking for swollen lymph nodes. They also checked and felt all around the neck area, again for swollen lymph nodes.
After that they would sit and talk, ask me how I was feeling and whether I felt anything was wrong.
Although this was basic, you did come away feeling a bit reassured to be told that all was OK.
After two years these checks went to every six months, again alternating between the oncologist and the breast cancer surgeon. These check ups every six months continue now. I saw the breast cancer surgeon in October 2012 and I shall see the oncologist in May 2013. I have been told that these check ups will probably continue until I have achieved ten years since diagnosis.
Since finishing treatment I have had mammograms every two years.
I have not had any more CAT scans etc. I know in the US that some of the women do have regular scans of different types and regular blood tests for cancer markers. I have asked my oncologist about that and she said it is not needed.
As far as the scans are concerned, in one way I am glad I am not having them because I am not exposing myself to all that radiation which can cause more cancer in the long run.
In another way I sometimes feel concerned that I am not having them because I think about metastases and wonder whether I would be aware if something was going wrong in my body.
If I were you I would just ask your oncologist and breast cancer surgeon what is the normal procedure after finishing treatment in Ireland. Perhaps Bernie and Linali will pop in to tell us what is going on with them post-treatment to give us more of an idea what goes on in Ireland.
With reference to blood markers for cancer, my oncologist told me they were only good for the day. I think she probably meant that like blood pressure they can go up and down. Because we all have cancer cells in our body all the time, which the body fights most of the time, we would not have zero as a cancer blood marker. Somebody told me that a normal marker was 38.
If I were you I would not worry about all of this. Try to live your life as normally as possible. If you feel there is anything wrong, or could be wrong, just get in touch with your hospital and they will see you. My own experience is it is better and gets more results if you do things through the hospital at which you are a patient rather than through your GP.
I saw that you had created a thread asking about hot flushes. My information is that all the cancer treatment can cause young women to go into early menopause and that for some their periods can stop for quite a while and then come back. This happened to someone I know who was diagnosed in 2005 just like me, but she was only 38. she was also TNBC. After some time her periods came back and reverted to normal.
I hope all this will help, Carol, and give you a bit of peace of mind. With the hot flushes why not contact the hospital and discuss this with them? Remember they are there to help you.
Love.
Sylvia xxxx
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Hello sam52,
Thank you for your post. It was nice to hear from you.
I am quite annoyed about the mess up with my request for a parathyroid hormone blood test. Although my breast cancer surgeon wrote a letter to me saying that I did not need any more and sending a copy of this to my GP, when I saw the GP and said I would like one for peace of mind, she said that was perfectly fine. She added it to the full blood test request that went to the nurse. When I saw the nurse on February 8th for the blood test, I repeated to her that I specifically wanted my parathyroid hormone level tested and that it was usually done separate from the full blood test. When the full blood tests came back there was no parathyroid hormone level mentioned. I phoned back a week later in case the PTH test had taken longer, but there was still nothing. I saw my GP to discuss the full blood test results and she could not understand why there was no PTH. Yesterday I was in town in Exmouth and went into the surgery to see if anything had turned up, and there was nothing. The receptionist said that either the nurse had messed up or at the lab they had somehow messed up.
I have left it for the moment as I am not sure what to do. I wonder whether the lab decided not to do it because my calcium level was normal! Also, I am not sure where the blood tests from Exmouth go, but I would think they go to the RD&E in Exeter and that somehow my breast cancer consultant/endocrinologist got involved and said I did not need one. I have a very good relationship with her, so I do not quite know what to do.
I was very interested to know about your DEXA scan as I do not think I had the same form as you to fill in!!! I do not remember questions about risk factors and secondary causes of osteoporosis. I just remember being asked about whether I followed a calcium rich diet and what illnesses I had had. Obviously I put down the only two I have ever had, breast cancer and hyperparathyroidism.
I was very interested that you had had to have an additional scan on the forearm because of the hyperparathyroidism. I do not think that I had one for the arm. The young woman did three scans. One I had to lie on my back with my legs straight and hold my feet outwards. The second one I had to lie on my back and open my legs fairly wide. The third one I had to turn on my left side with my left arm down and put my right arm over. She said this third one was for the hip. What was the arm one like?
Do you think that hyperparathyroidism can cause osteoporosis in the arm? I am really puzzled about all this.
I remember how we went through all our preparations for surgery together and then I had mine on November 11th 2009 after sestamibi scans and a DEXA scan. I remember you had your surgery after mine at a hospital in Oxford, but it was not that long after mine, so I think you must have done your three years by now and I have done about three years and four months. I remember I had a DEXA scan after the parathyroidectomy as well. This last one was the third one and so was about just over three years since the second one. I was not surprised to be told that my osteoporosis status had not changed much since the other two scans. Because we had the breast cancer diagnosis as well as the hyperparathyroidism diagnosis, and since both are risk factors for osteoporosis, and as far as I know only osteoporosis induced by hyperparathyroidism can be cured, we cannot be told we are cured because I do not think osteoporosis induced by breast cancer treatment, chemotherapy and radiotherapy, can be cured. Am I making sense? Please correct me if I am wrong.
I do wonder how much the people working the machines know about anything other than working them and repeating the NHS mantra for how you are supposed to deal with your osteoporosis. That mantra is a load of rubbish and consists of eating loads of dairy products, calcium carbonate (calcichews) and variations on bisphosphonates.
You will not be surprised to know that I repeated my own mantra, which is dairy products are no good for osteoporosis, humans cannot absorb the calcium from animals. Calcium carbonate in the form of calcichews is chalk and this is very difficult for humans to absorb. Wild horses (?) would not induce me ever to take bisphosphonates. They cause a lot of problems, including inflammation of the oesophagus and jaw problems, not to mention preventing new bone from forming and leaving bone that is old and brittle and more likely to break. I told her that I get my calcium from Solgar supplements (do not take many) plus a magnesium supplement and a Solgar vitamin D3 capsule. I drink fresh soy milk enriched with calcium phosphate, fresh soy yoghurt enriched with calcium phosphate and also a pro-biotic, plus almonds and other nuts and seeds, also dried fruit. She told me I was obviously very knowledgeable and that I should make an appointment to discuss the results of my DEXA scan with my GP. I am waiting for the written report to come through.
I was interested about the fact that you have not lost height. Are you the same height as you were before breast cancer and the hyperparathyroidism? I had not lost any height until I had the breast cancer treatment. my breast cancer surgeon said that the non-malignant adenoma on my upper right parathyroid gland was of a size that indicated it had been there for some time and had definitely preceded the breast cancer. If this is so, the parathyroid problem does not appear to have affected my bones.
In 2005/6 I was five foot ten. In 2009 just by chance I asked the nurse to measure my height and she said I was five foot nine. It was this that made me go to my breast cancer surgeon/endocrinologist and remind her how she had told me about the parathyroid problem in 2005 when she diagnosed my breast cancer. It was then that I decided to have the parathyroidectomy. I still remain convinced, especially I read that research you told me about, that my hyperparathyroidism probably caused my breast cancer or that it was a third factor, such as x-rays as a child, that may have caused both.
I shall be very interested to know what your PTH is but it is a long time that you have to wait, but the NHS is all about waiting. It moves in mysterious ways!
Do you remember that you had the minimal invasive surgery but my consultant would do only the full one. I wonder what goes on now.
I was glad to know that you had a beautiful sunny day in London and it was a pity that you had to spend it travelling to and from the hospital and at the appointment. It has been a nice sunny day here today, but with a very cool wind. I think we are all back to rain tomorrow.
I am going to cut back on the gardening in the large grounds here to avoid standing on my feet too much.
Two years ago I had the plantar fasciitis, pain under the heel, and this year problems with my ankle and tendons, all on the left foot, so I had better give it a bit of TLC.
I hope you manage to finish work on the allotment tomorrow after you get home from school. It probably will not be long before you are planting out your vegetables. Do you know the vegetable kohlrabi? Raymond and I used to buy it quite a lot in Canada, but we do not see it here.
Wishing you all the very best and hoping that things are not too bad with your father and Tom. Take care.
Love.
Sylvia xxxx
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Hello sam 52,
I forgot to say that I read that hyperthroidism also causes osteoporosis and that hypothyroidism was a risk factor in the development of breast cancer. I do not know where hypothyroidism fits in.
Love, Sylvia.xxx
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Thanks so much for your information Sylvia. To be honest I'm not overly concerned about not seeing my oncologist regularly. I know that if anything bothers me I can see her immediately. In the interim I am constantly checking myself so I will be aware from one day to the next if there is a change. I have asked for a CT scan as I never had one before chemo due to pregnancy. Am waiting on my onc to say yay or nay to this. Met my RO today, he said he's happy to give me 25 rads and that I don't need boosters because of my PCr. I sometimes go days without getting bogged down by the 'Big C' but then other days I get obsessed with recurrance, I so wish I could just relax now and not think of my mortality. I don't know will that day ever come. It's scary!
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Hello Mumtobe(Carol),
I forgot to say that we have to remember when we are talking to our great American friends that we have different systems of health care. In the UK and Ireland we have a state sponsored system and that in the US it is insurance based. This might explain the different things that we get post standard treatment. However the pool of chemothearpy drugs available are the same and the standard treatment surgery, chemotherapy and radiotherapy are the same.
I hope you are allowing yourselves some treats. Do not be to strict on yourself.
Love, Sylvia.xxx
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You're right Sylvia - I will go to my GP for regular checkups and a general overhaul & I will go to my gyny for scans of my ovaries which I know he will do for me every few months so I still feel I have a good care team around me. This damn disease better just leave me alone now, I have served my time with it! As I had stated to you before I am such a carnivore at heart, am heading tons of fish & omlettes for dinner but I got such a craving for meat at the weekend so on Sunday I bought organic beef strips and made the yummiest stir fry. Life is for living right?
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Good evening
I have managed to update the Janette Collins website. It is not very different from the original but the new software will allow me to do a lot more in the future. If anyone notices any faullts please let me know. As I am colour blind I am prone to making mistakes in that area.
I called the hospital this morning to get the results of the core biopsy I had last week and they asked me to come into the clinic. The biopsy did show lymphoma (I thought the fine needle result only showing inflammation was wrong)and that it had transformed to a higher grade, which isn't as far as a long term prognosis goes. So I start chemo on Thursday morning. It will be R-CHOP which will be the strongest chemo I have had so far. Tomorrow morning I have to go for a bone marrow biopsy, which I am not looking forward to. So that looks like my summer mapped out.
Michael
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