Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Jackpot,
Thank you for your post. You are right. There seems to be an epidemic. I sometimes get very angry when I read articles predicting that more and more people will be diagnosed with cancers of all kind in the years to come. It is almost as if it is a fait accompli and that it is alright because there will be more and more drugs to treat it and more people will survive. I do not think that is good enough. Today I saw in the paper that mammograms are picking up more and more cancer cells and putting people through lethal treatment when, in all probability, these cells would never have troubled them. You just do not know what to think. Having said that, the article then states that in the UK they will be extending mammogram testing from age 50 to 70 to age 47 to age 73. Does that make sense? Not to me! However, the mammogram machines are there, so I suppose the thinking is they had better be used.
I have seen on some of the threads that some women are thinking of not having chemotherapy, because of the side effects. It is hard to know what to do. I know that my oncologist told me that chemotherapy cannot cure, but it is a palliative treatment. I tend to think that the most important part of treatment is probably the surgery. Who, however, is going to take the risk of not having chemotherapy or radiotherapy? I have read that there are no statistics for people who have survived breast cancer without chemotherapy or radiotherapy. I do not think there are any statistics about people who have survived breast cancer with alternative treatments only. I know someone who had breast cancer about 25 years ago, had just surgery and is still alive. She was only about 30 at the time.
I was interested to know you had received a letter from the genetics clinic about an appointment to be tested genetically for BRCA1/2. This is probably because you are just 45 and TNBC affects younger women more than older ones and they sometimes have these BRCA mutations. Judging by what I have read on some of the threads, there are women who know their BRCA status, especially the younger women.
Let us know what your niece gets in the way of chemotherapy drugs.
Take care of yourself while you are waiting for September 25th.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I have just read a post on another thread where someone is saying they were recently diagnosed with two tumours. One was TN and the other was HER2+. Is there anyone reading the thread in the same situation?
Sylvia.
0 -
I had two but both TN, but I have a friend who had this situation....immediate mastectomy but no chemo or rads.
No results on my biopsy. Might not be until Thursday. It is hard to just get on with life with this thunder cloud hanging over my mostly bald head. Sigh.0 -
Hi Jackpot,
Liz has just had her results back a few days ago as she was only 41 when she found out she had cancer. She is in the clear, she does not have the BRCA1/2 gene. The only other person in her family that has had breast cancer was her mum who died from cancer in 1985.
Hi Sylvia,
When Liz asked her surgeon what her survival rates were he went onto "Adjuvant! online" and printed out that 64% of women in her situation will be alive in 10 years without Chemo and 77.6% with Chemo. there was no option to include Radiotherapy so I guess they feel Radiotherapy is not proven to work?
The info that was put in to calculate this was
age 41, perfect health, ER status: negative, grade 3, tumor 3.1 to 5cm, positive nodes 0, 10 year risk 35 prognostic?
Regards
Peter
0 -
Hi peterandliz
Good to know liz was clear, can I just ask what happened during the testing, my letter says there is councilling involved, did liz have to have that? Is it optional?
Is the actual test just a blod test, it also says I have to collect as much family history as I can which might be difficult as there scattered the length and breadth of the country
But I'm pretty certain there's no history of breast cancer among any of them...also how long did you wait for the results?
Sorry for all the questions just like to know what to expect
Take care
Jackpot0 -
I just got a "not cancer" phone call and result to last week's biopsy. We all started crying around here. First good news I've had this year from a biopsy.
Now on to radiation and the Seychelles this winter to celebrate the defeat of TNBC!0 -
That's awesome Susan! Wonderful news!
0 -
Hello peterandliz,
Thank you for your post. I was most interested in what you said about survival chances. I shall probably have a look at Adjuvant! online, although I tend not to take much notice of all these percentages and statistics. It does seem to indicate that you can survive without chemotherapy and/radiotherapy but it is a question of whether you are strong enough to turn down these treatments. All our cancers are individual. I wonder what happens after ten years?
I have now gone eight years and three months since diagnosis. I do think that a lot of what happens to you during treatment depends on your state of health when you begin.
I was glad to know that Liz does not have either of the BRCA genes.
Keep well both of you.
Best wishes.
Sylvia
0 -
Hello Susan
It is such good news to know that there is no cancer involved from the biopsy. You must be overjoyed and I know that we are all happy for you on the thread. Keep looking forward. Get through your radiotherapy and then put it all behind you and go off on that holiday. Let us know the date when you begin radiotherapy and give us all the details of your treatment so that we can support you and compare what happens in different countries. If you follow the procedure here you should get an appointment in which you are put on a prototype of the radiotherapy machine and the area to receive treatment mapped out on you. You should also be advised about what to do and what not to do during treatment.
Fond thoughts.
Sylvia xxxx
0 -
Hello Jackpot,
There is nothing to worry about with regard to an appointment about genetic testing. I actually asked for one after I had finished my treatment. I saw a genetics nurse and was with her for about forty-five minutes. It was mainly talking and getting family history. She told me after this that she would not be referring me to a genetics consultant because she was quite sure that my breast cancer was what they call a rogue cancer and not genetic. She said I would have developed breast cancer at a much younger age if it had been genetic. She did, however, take a blood sample and said this would be stored for future use should anyone in the family develop breast cancer. I have four nieces from my brothers. The blood sample is stored as a DNA sample for future use if needed.
In my family my maternal grandmother died of breast cancer with spread in 1955, but of course I have no details about that breast cancer except she had a mastectomy and radiotherapy. I am not sure how long she survived after treatment. Cancer was very much hushed up at the time.
I do think that all cases of cancer in a family should be documented at these appointments. On my mother's side where there were nine children, seven males and to females, four males have died of cancer. Remember that breast cancer can pass down through the male side.
I am not sure what happens if you do get referred to a genetic consultant but I should think it is a blood sample to look for BRCA1 or BRCA2.
Remember that only about 3% of all breast cancers are genetic.
I hope this helps. Peterandliz may have more details.
Thinking of you.
Sylvia
0 -
Hi Jackpot,
Yes it is just a blood test. We were told the results would take 8 weeks but it was nearer 11. I have heard of people waiting 4 months for their results.
I went with Liz to the counciling. It is mainly concerning how it will affect all your other blood relations. How to tell them if you have the BRCA gene etc.
We were told before we went to the interview that Liz may not be entitled to the test as she only had her mother in her family that had breast cancer so we made some up. Grandmother and Grandmothers sister. As Liz really wanted the test. They do not check anything.
Hi Sylvia,
Adjuvant! online, Is only available to the medical profession and cannot be accessed by the public. I think they have only done studies going back 10 years so that is all they can forcast.
Percentages etc only relate to a group of people all our cases are individual.
I believe everyones cancer path has been set. If it is going to come back it will, if you have been cured then that is also the case. Maybe this can be changed by 10-15% by looking after yourself? Maybe not? It is a case of we just do not know. If every cancer cell has been killed or removed in your body you must be cured? If some cancer cells have survived is there anything in our body that will kill them off naturally? If no then it will come back when the cancer cells multiply? Only my opinion and would love to here anyone elses view?
Regards
Peter
0 -
Hi Susan,
Just to say great news I am so delighted and what a fabulous focus to have is your holiday.
Good luck with the radiotherapy
0 -
Hello peterandliz,
Thank you for your post. I did try the Adjuvant! online before I saw your last post and did indeed discover that it is for doctors only.
I think I have only ever heard talk of five years and ten years survival rates. I think we agree on percentages and the fact that all our cases are individual.
It is only recently on these threads that the word 'cure' seems to be used. In the past, of course, patients were posting saying that they hoped a cure would be found for cancer, but I cannot remember anyone saying they had been cured, but I may be wrong. At my hospital when I was newly diagnosed my breast cancer nurse told me that in the medical circles they did not even use the word remission and that it was a word used by patients. I remember well what I was told by my oncologist and breast cancer surgeon after surgery and referring to my pathology report, that it was excellent and that there were no visible signs of cancer. I had had my chemotherapy before surgery because of a large tumour, and it did shrink but it did not disappear. I was told that I would have radiotherapy to mop up any stray cells. I subsequently had three weeks of radiotherapy with boosters.
I think that there are multiple causes and risks for cancer, and I think lifestyle seems to play a part with cancer and other chronic diseases. I think it is just common sense to eat a balanced diet, to keep active mentally and physically and to avoid negative stress and people who have a negative affect on you.
I think it is important to remember that our body is never free of cancer cells. These cells are circulating throughout our body all the time and most of the time our immune system fights them off. It is when our immune system, for some reason, becomes lazy or impaired and fails to fight off the cancer cells that we develop cancer. If you are tested through a blood test for cancer cells, you will not get a score of zero.
I was told when diagnosed that I should not have cancer and that my immune system had probably become lazy because I had never been ill and it had not had to fight.
I am posting a link that I looked at after asking whether breast cancer can be cured. Have a read and see what you think.
http://in.answers.yahoo.com/question/index?qid=20100708112201AAcnt18
Best wishes.
Sylvia
0 -
Hello linali,
I am just popping in to say hello. I was glad to know you are still looking at the thread. I hope all is well with you and yours.
Fond thoughts.
Sylvia xxxx
0 -
Thank you Lanali, biggest relief ever!
0 -
Hi Sylvia,
I have read the link you put up, thankyou.
I do not like the word "cure". I did how ever post that Liz's Onc said she would be cured if it does not come back in 5 years as TN comes back very quickly often within 2 years.
From what I have read it seems to be the case in atleast 98% of TN cases. Some people have posted it has come back after this time but they do seem to be vague on whether this is a secondary or a new primary!
Either way I think it is a good target for TN women to aim at. If they reach 5 years they can relax more and get on with the rest of their lives without having the worry of cancer. especially as it affects younger women. I see it as one of the possitives with TN. Liz finds it a great help to know it should not come back if she survive cancer free for 5 years.
I remember watching TV when they said Bernie Nolan was cured. I turned to Liz and said thats rubbish as it was only a year earlier that she had been diagnosed. We all know how that turned out.
Out of interest are the cancer cells that are present in our bodies TN if you have had TN breast cancer in the past?
I know one lady who has had breast cancer 3 times all primaries 1 of which was TN.
Regards
Peter
0 -
Hello peterandliz,
Thank you for your post. I was glad to know you found the link interesting.
I do agree that it sometimes gets a bit confusing on the threads as some people can be a bit vague about their situation, but breast cancer can be complicated and not easy to understand, especially with all the information available, all the different theories and especially perhaps the availability of pathology reports which we are probably not equipped to read properly. We do need to say whether we are having a recurrence, which means, to my way of thinking, the cancer has come back at the site of the first cancer. My oncologist told me the most likely place for this is along the scar of the mastectomy, if you have had one, and the first sign would be a rash here. I am not sure what the sign is for a lumpectomy. Would it be a rash on the scar?
If you have cancer forming on the same site, but the receptors are different, is it still a recurrence or is it a new primary? Can anyone answer this?
If cancer is discovered in a far site in the body, such as the lungs, liver, brain or bone, it is called metastases or spread if it has travelled there from the original site in the breast. I suppose to ascertain this the experts must study the cancer cells in the breast, otherwise how do they know whether it is metastases (secondary cancer) or a new primary.
I have often wondered whether cancer from one breast ever travels to the other and is metastases or if you find a lump in your remaining good breast, if you have one, is it always a new primary?
You can see how complicated it all gets. You can have lumps that have mixed receptors and different lumps with different receptors.
In all of this, lumps and cells mutate in the body.
As for Bernie Nolan, it should never have been said that she was cured. What should have been said was that she had successfully completed treatment and that there was no visible sign of cancer in her body.
I was interested to know about the lady you know who has had breast cancer three times and they were all primaries. Were they all in the same breast? Were the first two hormonal for which she took tamoxifen? As I have said before, I have read that if you stay on tamoxifen long enough, you can end up with TNBC.
I do enjoy reading your posts.
Have a good weekend.
Best wishes.
Sylvia.
0 -
Hello everyone,
It is nearly the end of the week and it has felt a long one to me. I have had a lot to do.
Many thanks to all of you who have contributed to the thread this week. I do hope all is well with Michael and Debra. I have missed them on the thread this week.
Hoping all is well with apandy (Anne) and MartOne and her mother.
I am sure we all hope that adagio and Carolben are both having a good holiday.
Best wishes to all of you.
Sylvia
0 -
Hello everyone,
You might be interested in looking at this link about stem cells.
http://en.wikipedia.org/wiki/Stem_cell
Sylvia
0 -
Hello everyone
There is new information in some of our newspapers about radiotherapy. I noticed this information in the Daily Mail and the Daily Express. Has anyone else read it? I shall post more information later.
In the Daily Express there was also a detailed account of the benefits of certain fruit, especially berries. It is quite detailed. Has anybody else read it? I shall post more details later.
Best wishes.
Sylvia
0 -
Hi Sylvia,
The lady I said I know who has had breast cancer 3 times all primaries 1 of which was TN is on Liz's closed Facebook group. They all started Chemo at the same time. They are all in different parts of the UK. The group started on Breastcancercare.org but after they finished their chemo the group moved to Facebook as it is a lot more personal.
I have to say I have never met the lady or even messaged her as she is on Liz's Facebook not mine but we know so much about her. I would know her instantly if I saw her in the street (from all her photo's, she is single, has 2 children and is 45 years old. She lives in Edinburgh and over the past year has travelled Europe on holidays and has enjoyed life to the full. If she posted tomorrow on Facebook that she wanted to stay in Norfolk for a week we would not think twice about saying she could stay with us as she seems like a close friend.
I think this is the difference between the groups on here and the Facebook groups. Everything is so much more personnal as you live through everything together. You see photo's of their family, read comments every day about what they have been up to etc. Facebook is more about every day life and feelings not only how they are feeling but how their husbands and other family members feel.
This lady is also a Breast Cancer nurse and has now found out she has lung mets.
She really is living her life to the full for atleast the last year and is an ispiration to everyone on the group. It has hit all the woman on the group very hard with her news. But she is so possitive and making a joke out of it all.
As I write this tonight another Lady has died on the group. I think she is the 4th in the last year out of 55 in the group. Not directly from cancer though. A week ago she found out she had liver mets. She had a biopsy on her liver wednesday and had a bleed internally. She went downhill very quickly and was in quite a bit of pain so they gave her lots of morphine at the risk of her breathing stopping but had to make her comfortable.
Liz has said she wants to leave the Facebook group as it is hard to keep reading the bad news but at the same time she does not want to leave people she now regards as friends.
Regards
Peter
0 -
Hello peterandliz,
Thank you for your post. Your posts always make very interesting reading.
I was interested to know about the Facebook group and how on Liz's group on facebook they all started on breastcancercare.org but moved onto Facebook after they had finished treatment. I was interested to know that on Liz's group they all come from different parts of the UK. I am not really sure what you mean about Facebook being more personal, as on the different threads on breastcancer.org people posting talk about all different things and I am sure that friendships have formed on the forums and that people do meet up and come together on the thread to help. I remember how on the TNS they rallied round to buy a computer for someone and how they were there for those terminally ill patients.
On this thread, because it is small, I certainly feel that those posting are my friends and that I have got to know them and I do not think I shall ever forget the first small group who went through treatment together on here and whom I was able to guide through, having gone through treatment myself. They were Maria-Malta, BernieEllen, bak94, christina1961 and mccrimmond324. We discussed treatment in detail but we also discussed all sorts of things and got to know our different lifestyles in different corners of the world. Since then other groups have formed and I think of the people as friends. We all used to post photographs and I have missed that lately and am sure we all miss BernieEllen's jokes and great sense of humour. I do like the idea of moderators to make sure everything runs smoothly and to take control of trolls or general troublemakers. I think breastcancer.org does a great job and is worth supporting. It can also step in to put right misinformation and there is a lot of that flying around with breast cancer.
I must admit I had not heard of breastcancercare.org. Is this a British charity?
I came across breastcancer.org by accident in 2009 after my cancer treatment, when I was looking for information about parathyroid disease and breast cancer. I met sam52 there and we keep in touch on the thread or through PMs and I really consider her a good friend.
I suppose whether you want to be on a forum backed by a charity or a social networking site is a matter of choice. I think on this thread we have a good mix. We have all been there for Michael and have been able to understand what it has been like for him over the death of his wife from breast cancer and I have had PMs from other husbands/carers. Recently we have had a daughter posting about her mother's cancer. I am always saying that people can post about whatever they like. Anything that takes your mind off cancer is good.
I was so sorry to read about another death on Liz's group. I am afraid that is part and parcel of being involved with cancer groups. There will be deaths but we have to concentrate on the fact that more and more of us are surviving. What I find very difficult is not knowing what has happened to some of the lovely people that have posted on here, have been very ill with metastases or rare forms of breast cancer, have contributed in a marvellous way to the thread but then disappeared. I think of women like Josephine, Dulcie and Liv. I have no idea what has happened to them. I stay the course here because I think it is so important to continue contributing on the thread way after finishing treatment. That is why I started this thread, even though treatment was way behind me. If we all leave threads like these after we have finished treatment there will be no one there to inform those just being hit with this dreadful diagnosis that changes your life. I can understand that people want to move on and forget their cancer ordeal, but someone needs to stay and be there for others.
Please give my regards to Liz and tell her I understand how hard it is to keep reading the bad news, but to concentrate on all the good news that comes out of her group of 55 women. In life there is always death.
Take care both of you and have a good weekend doing whatever makes you happy. Remember you can post about anything you like and if you have any beautiful photographs of the Norfolk countryside or flowers in you garden or anything you have taken on holiday, please post them. In the past I have posted photographs of flowers in the grounds of our apartment complex and I know they have brought a lot of enjoyment.
Thinking of you all wherever you are in the world and if you can pop in to tell us you are fine and getting on with life.
Sylvia.
0 -
Hi Sylvia
I have been trying to find the article "Six crucial things you must know if you want to beat cancer" but cannot find it, do you have a link?
I have been busy the past week getting prepared for the arrival of my Stepson who is about to start a course in Belfast. I hope he settles in ok, things have been tough for him since Janette's death.
I see there are lots of posts on the group to catch up with.
The weather has turned nice and warm, lets hope it lasts a while.
Michael0 -
Hello Michael,
Thank you for your post. I was so pleased to hear from you and I hope that all is going well for you. I remember that the information for which you want the link,came from CancerActive. I have just googled CancerActive and put in six things you need to know to beat cancer and there is a lot information that came up which i am sure you will find interesting. Have a look.
I have just remembered while typing that the information was in fact on the special e-mail I received from Chris Woollams. Have you signed up for it? It is free. I then read it and it has all sorts of links to other information on CancerActive. The titles on the e-mail were as follows.
1. It is you and your body that beat cancer
2. You have the potential to increase your own survival ...
and even prevent a cancer returning
3. Ignore your friendly gut bacteria at your peril
4. To survive cancer longer, cut your glucose and carb consumption
5. Stop the spread of cancer
6. Stress management helps you survive 'significantly' longer
Under each heading there are several links that give you further information.
There is no actual link to the e-mail itself that I receive.
If I can help in any way, let me know.
I was interested to know that you have been getting ready for the arrival of your step-son, who is about to start a course in Belfast. I hope he will be good company for you and that you will be able to help each other. I can understand how difficult it must have been for him losing his mother so tragically and he will still be grieving. I think it is only about eighteen months since Janette died. I do hope he will settle in with you. Grief must still be very raw for both of you and only time will gradually heal it. If I remember correctly Janette had three children. How are the others coping? I have a neighbour whose wife died in January from a brain tumour and he is in a bad emotional state. She was elderly, but it makes no difference. They had no children and he has no relatives and he finds life meaningless. I talk to him and try to help and comfort, but it is difficult.
There have been lots of posts and I do hope you will manage to catch up. There have been quite a few links posted.
SamUK reappeared and is still having a difficult time as she awaits surgery to try to reverse or at least improve botched surgery in the past. Sam52 posted some interesting information that she obtained from a Swedish friend who is an oncologist. Peterandliz continue to post interesting and thought provoking information from Norfolk. Jackpot had her first chemotherapy and is now awaiting the second on September 25th. Apandy (Anne) from London is waiting for chemotherapy and has an appointment on September 30th. Susaninicking, our American friend in Germany, finished chemotherapy and was able to celebrate the end of that ordeal. She also had good news from her biopsy results and was glad to know there was no cancer. InspiredbyDolce (Debra) continues to keep us supplied with information. Carolben from South Africa has taken a break from chemotherapy and is on holiday at her son's in Israel. Adagio from Canada is on holiday. Linali from Ireland still pops in to see us.
We have not heard much lately from MartOne from the Midlands posting for her mother who was diagnosed with IDC TNBC at 76. There has been no news from EmmaL in Manchester who has finished treatment, not from scouser47 in Liverpool or PeggySull in the USA. I hope they are fine and taking a break. I do like our group and care about them.
It is strange how quickly the weather changes in the country. In Exmouth we have gone from cold and rain to spring-like weather. Yesterday was a perfect day and I did some gardening.
Keep well, Michael and enjoy your time with your step-son. How old is he and what course is he taking?
Fond thoughts.
Sylvia.
0 -
Hello Michael
I have managed to find the post about the e-mail. It has got all the sub headings.
Sep 4, 2013 06:58am sylviaexmouthuk wrote:
Hello everyone,
I have just received my latest e-mail from Chris Woollams at Cancer Active. His e-mail address is chris@canceractive.com.
I have been reading the contents of this e-mail and hope that you will be interested enough to sign up to receive one or at least look up the headings that I give you. The main heading is 'Six crucial things you must know if you want to beat cancer'.
1. It is you and your body that beat cancer.
Under this there are the following headings.
An objective assessment of Chemotherapy drugs.
Brave Macmillan honesty over side-effects.
Living proof.
This is all about how those that survive cancer seem to have done other things in order to survive cancer.
2. You have the potential to increase your own survival and even prevent a cancer returning.
Under this heading there are:
Increase survival and stay cancer free.
Exercise and survival.
Supplements to stop your tumour regrowing.
Curcumin.
3. Ignore your friendly gut bacteria at your peril.
The microbiome and your good health.
Multi-strain probiotics.
4. To survive cancer longer, cut your glucose and carb consumption.
Under this heading there is:
New research on the ketogenic diet and hyperbaric oxygen.
Hyperbaric oxygen.
Reducing your blood glucose levels to fight cancer.
5. Stop the spread of cancer.
Under this heading there are:
Resveratrol
Sodium Bicarbonate heads for clinical trials.
Aspirin increases survival.
Vitamin D.
Buy the book 'Everything you need to know to help you beat cancer'. With reference to this book, you need the 4th edition which is the most current one, and not the old 2005 edition being sold cheaply in some place. It is best to buy from the wholesaler. (Phone 0203 186 1006). If you sign up for the e-mail you can click on the reference underlined to order direct.
6. Stress management helps you survive 'significantly' longer.
Under this there are:
Metal state, stress and cancer.
Amy's story - how an enlightened Integrated therapy programme beat brain cancer.
If you sign up for the newsletter you will find that all the headings under the six main headings are underlined and it is these that you can click on and get more details.
The e-mail address is chris@canceractive.com
The website is http://www.canceractive.com
August 31st was the birthday of Chris's daughter Catherine, who would have been 35 if she had not died of brain cancer 9 years ago. Catherine survived 4 years instead of the less than 6 months that her oncologists had given her as a prognosis. From the death of his daughter ensued his books on cancer, his website and that most informative magazine, icon.
I am sure you will be interested to know that 3,800 to 6,000 people every day visit his website.
I hope you will all find this useful and I shall certainly be reading everything in more detail as I click on the headings.
0 -
Hello Michael
These are the links from the Chris Woollams e-mail to further information.
1. It is you and your body that beat cancer
http://www.canceractive.com/cancer-active-page-link.aspx?n=3473
http://www.canceractive.com/cancer-active-page-link.aspx?n=146&Title=Cancer%20survivors
2. You have the potential to increase your own survival ...
http://www.canceractive.com/cancer-active-page-link.aspx?n=2599
http://www.canceractive.com/cancer-active-page-link.aspx?n=1571
3. Ignore your friendly gut bacteria at your peril
http://www.canceractive.com/cancer-active-page-link.aspx?n=3431
4. To survive cancer longer, cut your glucose and carb consumption
http://www.canceractive.com/cancer-active-page-link.aspx?n=3451
http://www.canceractive.com/cancer-active-page-link.aspx?n=3132
http://www.canceractive.com/cancer-active-page-link.aspx?n=3117
5. Stop the spread of cancer
http://www.canceractive.com/cancer-active-page-link.aspx?n=1906
http://www.canceractive.com/cancer-active-page-link.aspx?n=3185
http://www.canceractive.com/cancer-active-page-link.aspx?n=509
6. Stress management helps you survive 'significantly' longer
http://www.canceractive.com/cancer-active-page-link.aspx?n=981
Hope you find them useful.
Best wishes.
Sylvia
0 -
Greetings, Sylvia and all! I just wanted to pop in and say hello. I am happy to see that you are doing well. Your profile photo is lovely. I am also glad to see that this thread remains active and as informative as ever. I am doing well. I had a little scare about two months ago when my tumor markers had a slight rise, but they went back down slightly six weeks later. I will have another test in November. At the time they rose, I had much inflammation in my body from ulcerative colitis so I am hoping that that's what caused the rise. Now that my UC medication has been adjusted, I'm feeling well again.
Life is busy, and like so many, I am not able to spend as much time on the computer. I am still working full time and fostering a few kittens here and there for the local animal shelters. Life is good and I certainly do not take it for granted these days!
Take care,
Love,
Christina
0 -
Hi Sylvia,
I understand and agree with everything you have written. I remember the photo's of flowers and the jokes and I am not trying to take away anything from this forum. But there is a big difference between forums and Facebook.
I am thinking how I can explain Facebook and its differences with the Forums.
Members on here and other forums will look on the website once a Day, week, every now and again etc and it has to be refreshed to see the new messages. How often do we read, "Hello I have not been on here for a while"?
Many people on Facebook have it on all the time. Messages pop up instantly any message you type goes instantly to the person you want it to. Liz only has about 100 friends as she only has people she actually know or have chatted to on the computer and at any one time there are probably 20 of them on line and available for Liz to chat to.
You can look instantly at 100's of photo's your friends have put up of their family and many photo albums go back 6 years on Facebook. Many younger people do not have actual photo's of their children and holidays they are all stored on places like Facebook. Our last photo of Taylor we have is of when he was 5 years old. in the last 8 years all our photo's have been taken on a digital camera and loaded onto Facebook. So anyone who is a friend on Facebook can see all our pictures taken in the last 6 years of our holidays etc.
If you are a housewife cooking at home and you drop a saucepan full of potatoes. They may post it on Facebook. They will get 20 messages back from their friends so you get that interaction with other people without leaving your home. Liz will chat with at least 5 people on Facebook each day and she chats with her Dutch cousin every day through out the day. We were chatting last night with 2 people we worked with 15 years ago. They were at work at the time but had Facebook up on their Iphones. We chatted about when me and Liz used to work there.
Nobody has to go outside their door to have a nearly fully interactive life with other people any more.
To some housewives that are stuck in the house all day looking after young children this can be a massive help. How often do young mums say they have been stuck in the house all day with only children to talk to. No adult interaction?
Regards
Peter
0 -
Thank you for the links Sylvia
0 -
Hello Christina,
What a lovely surprise to hear from you and thank you so much. Thank you for the kind words about the thread. I am gald that you still find it informative.
I was so glad to know that you are doing well. I can imagine your anxiety when your tumour markers went up a little and your relief when they went down a little six weeks later. You are lucky to be able to have these tests and to keep an eye on what is going on in your body. As I have said before, we do not get this in the UK as far as a I know. I asked my oncologist about these blood tests and she said they were only good for the day. We all know that there will always be cancer markers in our blood but the anxiety is when they go above what is considered 'normal'. I think this is 38. I think tumour markers are probably a bit like blood pressure and cholesterol. They go up and down, as do a lot of the things they test for in routine blood tests. I suspect you are right about the slight rise due to inflammation from your ulcerative colitis. I have been told that ulcerative colitis can be very unpleasant. I do hope that you will continue to feel well.
I know that you have a busy life and can understand that working full time does not leave you a lot of time to spend on the computer. I remember all the good work you were doing with rescue dogs.
I am glad to know that life is good for you.
Have you any idea what happened to mccrimmon? I remember she moved from Florida back to Pennsylvania. Let us hope life is good for her. I do see posts on the threads from bak94. What a journey she has had.
Wishing you all the very best.
Love.
Sylvia xxxx
0
