Calling all triple negative breast cancer patients in the UK
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Hello all of you, I share the picture I took today I hope all of you enjoy.
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Hello everyone,
I thought you might be interested in an article that Raymond found in the latest edition of his IET magazine (IET = The Institution of Engineering and Technology). This is a magazine from his professional association, of which he is a member. It is entitled "Engineers speak on curing cancer at first EngTalk". You can find out more about EngTalks and watch "Why haven't we cured cancer yet?" at www.theiet.org/engtalks.
Raymond printed off the transcript for me. It was eighteen pages long and because it was speech to text some of it read a bit strangely!
In the actual magazine it says that Professor Eleanor Stride talks about how her own research centres on using micro-bubbles for treatment. As I understand it, "correctly used, micro-bubbles can be used to deliver treatment directly to a tumour, avoiding the massive side effects that accompany flooding the body with drugs".
"Currently mice are the test subjects, but Eleanor hopes that the technique will move to clinical trials in the next two years. But, she concluded, what's likely to change the world is the route through the maze we haven't thought of yet".
I read in this article that less than one percent of chemotherapy drugs have the desired effect.
To me this is quite shocking that the present treatment is based on flooding our bodies with toxic drugs in order that one percent of those drugs actually reach the tumour. The other 99% is in our body causing the damage that we know and is it actually causing more cancer? All we can say is that the one percent probably saved our lives. We cannot know whether we would have been fine just having the surgery to remove the tumour. How many if us want to take the risk and not have chemotherapy?
It was quite revealing to know that the chances of dying of cancer have trebled in the past hundred years and Professor Eleanor Stride said that the biggest problem is ensuring that all cancer cells have been caught.
Let us hope that this research about micro-bubbles and directing treatment straight into the tumour comes to fruition in the not too distant future.
I have just simplified everything but in the actual transcript of the presentation it goes into much more detail.
It is a dismal day here in Exmouth. It has been raining through the night and looks like it will be raining all day. I was hoping to do some work in the grounds, but it looks as though it will not happen. It seems almost as if summer has come to an end.
Best wishes to everyone.
Sylvia xxxx
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Hello everyone, again,
I have just been looking back at all the posts for July. I noticed that we have not heard from a few new posters since their first post.
Hello to ElleElleBee and VL22.
Hello Katie420.
I was wondering how things are going with you.
Hello Maria12. I hope you saw that I had answered your post and that we shall hear from you.
Best wishes to everyone.
Sylvia xxxx
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Mary, Mary, wherefore art thou?!?
Love
Sylvia xxxx
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HI, Sylvia
Thanks for worrying about me, I am fine, it has just been a busy week. I was gone over the weekend, 8 women (country dwellers all) went to the city and helped my sis-in-law turn 60. We had a nice hotel, a very nice dinner, some of us went to a concert and the next day we did some shopping. I got home Sunday night, and since then have just been busy with a myriad of things. Things seem to keep popping up, my air-conditioning has been on the blink, and had to get that repaired. I had to make a trip to the dentist yesterday, I have been having some unusual pains in a tooth over the weekend, he looked at the x-ray and said he thought idiopathic, I think probably sinus-related, I have had that a couple of times over the last many years. What I thought was a toothache is actually sinus pressure, since I have a lot of problems with that, maybe. At any rate, the dentist wasn't concerned about it, and it is better. I might blame it on the very cold air-conditioning in the hotel, I had to wear a sweater even though it was very warm outside. I have to leave soon this morning, I have a vehicle that needs some attention, I need to take it to the shop. I have too many vehicles, my husband liked cars and I still have them , it's rather silly but I seem to have a hard time letting some of his things go. My trips to the town where I do most of my errands is farther away this summer. Since May workers have had our road closed, and we who live in this area have to travel an hour each way instead of 1/2 hour. It makes a difference, it is still closed and we are all tired of the extra time spent driving.
I will be back later to talk more, there is a lot to catch up with here on the thread!
Love, Mary
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Hello Mary,
I was glad to read that you are alright. It was good to know that you have been away having some enjoyment.
I do hope things will ease up with your teeth problems. Going to the dentist is not something that I like, because of the problems with my gums and this genetic factor for which, it seems, nothing can be done. I remember years ago when I was in Canada that I had forty-five minute treatment sessions every three months at a periodontal department in a very good university hospital. I had my mouth open for so long that I developed TMJ and the periodontist told me that he had caused it. Fortunately it disappeared.
I realise it must be difficult for you doing all these things in everyday life that we have to do. At least with Raymond here we do everything as a team.
Just take your time with these things and look forward to having you back on the thread.
I still wonder about Hanieh. From the news here there have been crackdowns in Iran, but with our media we cannot really know what is going on.
I think the world has gone mad. The prisons are in chaos here and I heard on the news that the prison population has gone from 45,000 to 85,000 and that there are not enough prisons, not enough prison officers etc. and from my point of view no common sense. The live-in-a-bubble bureaucrats in our silly government have taken over the running, away from the common sense prison officers. There seem to be prison riots now all the time.
Look forward to hearing from you.
Love.
Sylvia xxxx
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Dear Sylvia, Mary, Adagio, Pam, Lou, Val, Kath and all,
I hope that you are all well, I have been catching up on the thread - I would like to start by saying I am very very sorry for disappearing so suddenly from the thread, without any explanation or updating you all on how things were going, especially after all the support you gave me. I feel very guilty for just disappearing in May without any explanation or at least posting to let you all know how things were going.
I had become quite fixated on the whole dietary approach, and was researching things tirelessly, but it actually ended up causing more stress to my sister, as it was complete information overload. So in May I decided that I had become too fixated on one thing (once I get drawn into something I find it very hard to switch off) a bit like ocd I suppose, so I realised that I had to stop and give my sister breathing space, as I was looking at alternative medications to supplement chemo, plus diet and food, vitamins and minerals, and it was all just too much. So once she started chemotherapy I completely did a U - turn and backed off to let her be relaxed and not to stress her out throughout her treatment.
I had also started a new job (self employed) which I had disregarded since her diagnosis, so I threw myself back into that as a way to switch off from overwhelmed her with information. That's when I stopped posting, which I do feel really guilty about, and I had mean't to rejoin the thread over a month ago, but I was looking for time where I could read through every single post that I had missed in the last two and a half months, which I have done now.
My sister has just finished her carboplatin and taxol regimen, she had 12 weeks consecutively of it, so it was both together (carboplatin and taxol together) on her first week, then either carboplatin or taxol on of the following weeks, then both together again - so I think that counts as 4 cycles in total - of which she had chemotherapy every week. She tolerated it really really well, her neutrophils were low on the third week, so she missed the third week, but she got through all other weeks with minimal side effects.
She had to take some filgrastim injections regularly, and after missing her third week of chemotherapy she ended up taking filgrastim injections regularly to prevent her neutrophils going low again. She was adamant that she did not want to miss any more chemo sessions. She went swimming every week throughout the last four cycles of chemo, she said it was important for her mentally to be able to swim and that when she felt really ill that the swimming actually helped her feel better. I think the advice was to avoid swimming during chemotherapy (I think - not 100% sure) but my sister said that swimming was an important coping mechanism for her during treatment, as she has swam for many many years. The days that she felt really nauseous or ill, she grabbed her swim bag, waved goodbye to us, went to pool and came back saying she felt a hundred times better for going and that the stomach ache has subsided after her swim. I must say that she makes 100% certain not to swallow any pool water due to the bacteria and risk of infection.
She also had a port placed towards the end of June, and she feels that the port makes it so much easier to receive the chemotherapy. She had to push for the port though, as I think due to costs/expense e.t.c she may not have been given it, but as it was initially presented as a choice, she made sure that she got it. She also swims with her port without any problems, but she takes great care and feels that this is what is right for her.
In week 9 she had to have a transfusion (2 units) as her haemoglobin levels were low, but that only happened once and her bloods have been fine since. She wore a cold cap throughout all her treatment sessions and although she still lost a lot of hair, she also kept a significant amount of hair, and was able to style and disguise it to look like a full head of hair! The nurses were really impressed with how well she has done with the cold cap, and also how upbeat and positive she has been throughout her treatment.
She started cyclophosphamide and epirubicin this week, it will be every three weeks, of which she has just had the first session earlier this week. She has been given tonnes on antisickness tablets and 2 courses of preventative antibiotics to start next week. So far she has been experiencing some side effects, but she doesn't let it affect her day, she doing her decorating and putting pictures up around the house, you wouldn't even think she is on chemotherapy.
She did gain a lot of weight during chemo so far, but I think that was partly due to being on high dose steroids to combat side effects during treatment sessions, as well as some comfort eating at times. I noticed this week that she has been talking about taste changes (a metallic taste) and food tasting a bit odd, which was too be expected at some point, but despite this she perseveres on and she doesn't talk much about symptoms. She is a real inspiration, she has got though this much treatment and see has been writing two book chapters at home for work. She is constantly occupied and extremely positive.
I just wanted to update you all on how she is doing, as I feel very bad for disappearing from the thread after having received so much support from you all. It was always my intention to come back on, I just felt overwhelmed at the time too as I was realised that my help was doing more harm than good, so I threw myself into work and trying to salvage that and my time management was very poor the last two months too. But I am extremely sorry. I read though all the posts, and I will keep in touch too.
Much love,
Kathy xxxxxxx
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Hello Kathy (Kathy28A),
Thank you very much for your friendly and most informative post. We can all understand how you felt the need to have time out and deal with all that you had going through your head.
I think we all understand how everybody can get into overload when someone is diagnosed with cancer. It can happen to both patient and carers. I think it was a good idea to step back once your sister started chemotherapy. All of us patients find our own way to get through treatment, especially chemotherapy, which goes on for such a long time. It looks as though your sister has done just this and is doing very well.
I think you did the right thing in switching off and concentrating on your new self-employed job.
There is no need for you to feel guilty and we all understand.
It looks as though your sister has coped very well with the carboplatin and Taxol and that will be of interest to all of us. It looks as though the oncologists are trying different ways with the drugs at their disposal.
It seems to be fairly standard practice to take filgrastim injections after chemotherapy now. It seems to cope with the problem of low white blood cells. It was not around when I was going through chemotherapy or at least I was not offered it. Fortunately I never had problems with white or red blood cells, but I know a lot of women do.
I think you are right that patients are told to avoid swimming during chemotherapy, but it looks as though your sister benefited from continuing with something she enjoyed doing. During chemotherapy we all have to make up our own minds about what we are going to do and not going to do. I was told to have a flu injection, a pneumonia injection, all teeth checked, avoid crowded places, seafood and salad food. All these things we are told to avoid are because we have low immune systems and are vulnerable to infection. As for eating, I ate what I considered to be healthy, which did not necessarily agree with what the NHS said.
Having a port installed is a good idea, because you can get hardened veins during chemotherapy and it is difficult to have blood taken. Again, I was lucky to get through all chemotherapy with a cannula. Again, we all have to make up our own minds.
All new patients will be interested to know about the cold cap. Losing one's hair is very frightening and traumatic for most of us women.
I do hope all will go well with your sister while she is going through cyclophosphamide (Cytoxan) and epirubicin (Ellence). I had these in the first months of my chemotherapy and was fine, but we are all different. I had them every three weeks.
Your sister is right to live her life as normally as possible and keep to a normal routine as much as she can. If she feels tired I am sure she will have a rest and I am sure she will know by now to keep well hydrated and to keep looking forward.
Some women put on weight during chemotherapy because of the steroids, some lose weight and some, like me, keep their normal weight.
It is quite common to get this metallic taste in your mouth, but somehow you get by.
Your sister is doing really well and she will get through this chemotherapy journey.
I do hope you have managed to sort your work out and all is going well.
I shall answer your PM tomorrow.
That is all for now.
Love.
Sylvia xxxx
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Hi, Sylvia
It is a bad thing to miss several days on the thread because it takes a while to catch up! But it is a good thing to have lots of activity here.
I have heard that Virgos and Capricorns are good couples too. My birthday is September 5. Soon I will turn 65, sort of a milestone I guess. There is not a doubt in my mind that the last stressful few years have aged me, I am trying to overcome it. You asked about Virgo men that I dated and why I didn't date them long; probably we were too much alike. I saw one of them today in the hospital, we have remained friends over all these years. I had a bone density test at the hospital and heard that he was a patient and stopped to say hello. He had a valve replacement in his heart replaced with a new one, a major surgery, I think. He seemed to be doing well. He has a much younger girlfriend, he is only interested in younger women now, he seems to think they will take care of him! I wish him luck with that!
My gynecologist ordered the bone density test for me, I have not had an abnormal test but she thinks I am the body type to have osteoporosis. We'll see. I have lost some height, the technician said it happens to all of us as we age. I haven't lost it in my legs, probably in my back. I have degenerative disk disease there.
I was surprised to read that your BC surgeon said that mastectomy isn't a major surgery. I would think any time part of your body is removed it would be major, but I'm sure she would know.
The funeral of my neighbor was very sad, so sad when a young (50) man ends his own life. No one seems to know why, and I have heard the most awful rumors, I refuse to believe any of them except that he might have had a serious health problem.
I will close for now and try to catch up with some more here.
Talk again soon, love, Mary
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Hi, Marias,
I want to compliment you on your photography, you do a great job! It is so hard to take pictures of birds, and you have so many beautiful pictures of the birds around you. I love birds too, I think the world would be much too quiet without them.
I am glad you are doing so much better.
I will talk to you again soon, I am trying to catch up here.
Mary
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HI, Pam
I enjoyed your pics at the winery, you can tell I am behind in the posts! Glad your appetite is good, I had a good appetite my entire life until chemo, and I know my body struggled because I didn't eat right during treatment.
It must be wonderful to have so many good places to go eat, it's not like that here unfortunately. I usually just eat at home, it's better that way. I do enjoy going places and eating good food that I didn't have to cook!
I have been techno-lazy and still haven't set up my Fitbit. I usually think of it in the middle of the day and think, it's too late today for it. Must put that on to-do list!
I will also remember the name of the book "Feed", I think I would like it. Also enjoyed 1984 and Brave New World, enjoyed in a dystopian sort of way, that is. Have you ever read Lonesome Dove? It may sound unlikely, I didn't think I would like it, but it is one of my favorites now. I have recommended it to people who didn't think they would like it, and they loved it, too. Just good storytelling.
I didn't do reconstruction either, and I only had one breast removed. They were small anyway, so it works, but I usually wear a bra with prosthesis when I go out. It sounds like you are still thinking about recon in the future? The doctors can do anything you like these days, just put yourself in good hands and it will probably work out fine. If I had been 20 years younger I would probably have done it at time of surgery, but since my husband was also ill, it just seemed like too much to deal with at the time.
Having a nap is not a bad thing, it takes time for your body to get over everything that has happened.
Talk to you again soon,
Love, Mary
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Hello to all
I was at farm today watching storm move in, not much rain but dramatic0 -
Hi, Rhonda
How nice you got to visit with your son, he and his wife are a beautiful couple.
Where will you go on your cruise? I'm glad your radiation healing and your infusions are not stopping your traveling, you look very good. And I see you will start Xeloda at the end of August.
My surgery site still feels tight, and it's been over 3 years since surgery, I did not have radiation. My doctor says it's mostly nerves since I seem to have full motion.
I shall talk to you again soon, love,
Mary
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Hi again, Marias,
I was looking at bird pics again, the gray and white bird on the floor of your patio looks like some kind of hawk. I have hawks that come to my bird-feeder once in a while, when they do all the other birds scatter! And they do not return until the hawk leaves.
Mary
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Maria12,
Welcome to the thread! It is scary to have TNBC, but you will get used to the idea and maybe you will be glad that you don't have to take 10 years of pills afterwards. Chances are very good that you will be here with your child for many, many years. In the meantime, it is scary but you can come here and tell us about it. We all have our times when we worry.
I hope your treatment goes easy on you!
Mary
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Hello Mary,
I do sympathise with you about all the catching up that has to be done if you miss a few days on the thread. Just take your time and do a little bit when you can. Being on the thread is supposed to be therapeutic and relaxing, so do not try to do it all quickly.
It is true that Virgos and Capricorns are supposed to make good couples. Raymond and I certainly make a good team. I do not know what I would do without him.
It is curious that our birthdays are so close. I seem to have a little cluster of friends around the first few days of September. I am September 1st, I have two people on September 2nd, two September 3rd, one September 4th and you September 5th.
What you said about that Virgo man is very interesting. I do not think younger women will want to look after older men!
It is quite a disturbing day here in our complex, so I think I shall write more later on.
Love.
Sylvia xxxx
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Hi, Sylvia
I was reading your post about the article Raymond found in his engineering magazine, about the research on sending micro-bubbles into the system targeting tumors directly instead of flooding the system with drugs.
My brother-in-law had cancer 7 years ago, he had colon cancer that had metastasized to his liver. His initial chemo killed the cancer in his colon and somewhat shrunk the tumors in his liver. After that they gave him a chemo that did just what you are saying, it was a chemo that was delivered only to the tumors in the liver. It could not shrink them enough to perform surgery. He had several other drugs later but none of them had the proper effect, and he did not survive. I agree with you that it is shocking if only 1% of the chemo drugs we are given have any effect, however, if the drug is delivered only to the tumor, what about all the stray cells that we are told may be traveling around in our bodies? It would be very good if there were a way we could be told if we have any of these stray cells roaming around, although I have read also that everyone has them; it just comes down to whether or not they are "switched on".
Also, on the bright side, my tooth is better. But I mentioned before the vehicles I am trying to deal with: now the vehicle I most want to sell is having all sorts of problems although I have already put expense into fixing it up. It now seems to have a radiator leak, I think I am going to have to pay somebody to take it! It's a shame, it's a very nice car, it has just sat too long since my husband was too ill to deal with it. I do find a lot of these matters overwhelming, things were neglected during the time that he and I were both ill. Even though he couldn't do much do fix things the last couple years of his life, he always knew who to call to take care of it.
Oh well, onward and upward!
Mary
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Hi, Kathy28A,
Your knowledge and understanding of everything going on with your sister is just wonderful, you have learned right along with her about all the details of what she is going through, and then some. It sounds as if she is handling things very well too.
When I was doing my chemo treatments, my MO told me he was surprised I was losing weight, I lost about 12 lbs. overall, but was thin to start with. He said most women gain weight while undergoing treatment. I was amazed at that, I had no appetite and my taster didn't work at all. It was just very hard to eat much of anything for me. So according to my MO, your sister is in the norm. And probably better off for it.
We are all given the steroids, I think, they bothered my sleeping and made me nervous, but I was told they are necessary.
Thanks so much for sharing your story!
Mary
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Hello my fellow TN sisters
I'm writing with a heavy heart. My friend Kim, fellow tn, who told me about bc.org. Is now brain dead. She has an aneurysm that burst this morning. They are waiting for all the Dr's to sign off, before pulling the plug. She was an 8 year bc survivor.
Her largest fear, was her TN bc recurring. She was just getting very comfortable with her remission, and then this occurred. She is the one who took a trip to Italy with her sisters to celebrate a year since her dx. She did so many things to inspire me and those that knew her. It has helped reinforce that life is short, and not promised. My heart is so heavy. Just needed the support of my TN sisters.
Val
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HI, Val
I am so sorry to hear about your friend Kim, what a shock that must have been for her family and friends. When an aneurysm happens it happens so fast!
I agree, it shows us again how we never know what's around the next corner. I'm so glad she enjoyed her life, and lived it to the full.
My condolences to you and your friends, her family.
Love, Mary
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Hello VAl, IM really sorry about your friend. I give you a strong and supportive hug.
Mary, thanks a think is a hawk too. What happen with the storm, that look dangerous. Im sorry about your car I will like you find a new an easy one to take care.
Kath I hope your sister became good really soon.
Have a good day every one
Abrazos
Marias
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Hello Mary,
I am going to try to continue doing a bit more posting.
You are lucky to be getting a bone density test. It is not that easy to get them here. If we are not being treated for something at the hospital, we are largely in the hands of our GP and they are not keen to refer you to specialists unless necessary. I had never had a bone density scan until I started at the hospital for my breast cancer. I suppose before that I did fit the body type, tall and slim. At the hospital when going through the CT scan and bone nuclide scan to see what was happening with the breast cancer, it was discovered I had high levels of calcium in the blood. Apparently this can be a sign that cancer had spread to the bone. To rule this out the oncologist did a blood test to see if I had an overactive parathyroid gland (hyperparathyroidism). If this is overactive calcium leaches from the bones into the blood and you can become very ill. I was diagnosed with an overactive parathyroid gland and was told this was quite rare. I believe it is something that is under-diagnosed because it does not form part of the routine blood tests, as the thyroid gland does. I was told this overactive parathyroid preceded the breast cancer. Somewhere on this thread I have described all this. It was cured through surgery in about 2009 if I remember correctly. I did all my cancer treatment first and then had to remind my medical team about the parathyroid. They had forgotten all about it. On the thread somewhere there should be information about a possible connection between an overactive parathyroid and breast cancer. I actually joined breastcancer.org in a quest for information about all this and did quite a bit of posting on the high calcium thread.
I had lost no height before breast cancer and I know that the osteoporosis started after chemotherapy treatment. It obviously affects the bones.
I am not convinced that osteoporosis has to be part of ageing. The medical profession blames everything onto age. Recently I have been reading about arthritis not being part of ageing, but everyone thinks it is.
With osteoporosis my understanding is that all the problems are in the spine and the hip, but the legs are not affected.
The thing about mastectomy not being major surgery, as explained to me, was that it is outside the body and not considered major like hip replacement or a hysterectomy. A mastectomy operation, I was told, would take 45 minutes. If you have reconstruction it takes a lot more time and I think probably complicates everything. It is not something I would have wanted.
I can understand how sad the funeral of your neighbour must have been. I would think it is quite possible that he had health problems.
That is about it for this post. I am going to see what else has been going on since yesterday.
I hope you are having a good Saturday.
Love.
Sylvia xxxx
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Hello Mary, again,
That was an interesting post about your brother-in-law. It is sad that he did not survive. My elder brother died in 1995 of cancer that had spread to the liver and pancreas. They said that they could not find the original cancer but I believe it was colon cancer. He was diagnosed about September 18th 1995, was offered only chemotherapy but was told it would not be much use. He refused it and died peacefully October 21st 1995. He was 56.
I think this treatment with the bubbles is a bit different and has to activated through ultrasound.
As for stray cancer cells, they are part of our body and the immune system deals with them most of the time. It all goes wrong when the immune system fails to deal with the stray cells and they get out of control, start replicating and forming tumours. My oncologist would not take blood tests to find out cancer cell levels in the blood. She said it served no purpose as these would be up and down on different days. Since cancer cells are always present, it would seem you would never get a zero number. Sometimes it all seems complicated. I was told on diagnosis that I should not have breast cancer, but the immune system of healthy women sometimes gets lazy and fails to see off the cancer cells. Who knows where the truth is? It could be that the parathyroid problem caused the breast cancer.
I do hope you will solve the problem of your vehicle. I can understand how all these matters that need attention feel overwhelming. I am sure that I would feel the same if Raymond were not here to help.
You are doing a great job catching up on the thread.
Have a good weekend.
Love.
Sylvia xxxx
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Hello Val,
I was so sorry to read about your friend Kim.
How sad that, as an eight year bc survivor she should have an aneurysm.
It is indeed true that life is short and there are no guarantees. Try to focus on all the happy memories you have.
Sending my heartfelt sympathy.
Love.
Sylvia xxxx
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Hi, Sylvia,
When my brother-in-law was diagnosed with colon cancer that had spread to the liver, he was sent to a local cancer surgeon. She told him she could not operate on his liver, the tumors were too large; she did not give him a good prognosis. He asked her how long he had, she thought about 3 years. He then went to an oncologist who told him much the same thing. He did not want to accept that, so he went to a large city hospital, where they told him they would try to shrink the tumors on his liver with chemo and then operate when they were small enough. So he went through the next couple of years with varying types of chemo, which got rid of the colon cancer, but it was never able to shrink the liver tumors enough. He lived about 3 years. So in the end it turned out the same, at least in his case he had a fairly good quality of life, he remained quite active until about the last 6 months of his life. He was also 56.
My MO also told me that she would not do blood tests, or pet scans, or MRIs or CT scans, unless I had some kind of symptom. So my follow-up visits with her are usually brief, I guess that's a good thing. As I have said before, I wish there was a good way to check for early lung cancer. I was a smoker for many years, I quit 21 years ago. And now it is one of the main recurrence areas of TNBC. But there doesn't seem to be a good test, so I try to not worry about it and do the best I can.
I have not got the results of my bone density scan yet, I have my fingers crossed for a good report; I am sure if it's not good the doc will be recommending one or another bone-building drug. When I had the test the technician did say that the loss in height does happen to everyone whether they have osteoporosis or not, it is just a matter of compression over the years, gravity gets to all of us! Also bad posture, which I am guilty of for sure. I have to consciously remember not to round my shoulders, and I was probably not standing straight during the height test, since it all happened so fast. My acupuncture doc said that a lot of impact exercise and even too much walking or running is hard on the spine, but then the weight-bearing exercise is also what builds bone; so he just shook his head and said, Moderation is the best.
Thanks for explaining why the mastectomy is not considered major surgery, because it happens outside the body.
It sounds like a lucky break that the docs found your parathyroid problem, it is not something that a lot of people would think of looking for, I don't think. But it does seem that you had very good doctors.
I am off for now, we will be heading into another week; the weeks go by so fast it is just crazy! The world seems to be spinning faster, or is it just me?
Talk soon, love, Mary
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Happy Sunday Everyone,
Sylvia, It's funny that you asked about how I find the time to read, because I actually don't have it. I probably watch a little less TV to compensate. Voracious reading works so beautifully as an escape for me that I'm happy to make the time for it. If I read George Orwell's Animal Farm, I was too young to understand it, or I have forgotten it, but I'm always happy to have something to add to the list. The language in the book Feed can be a little frustrating, because it's written from the dumbed-down perspective of the "future," but I thought it was worth it.
Marias, I absolutely loved the pictures of the birds that you posted. I remember when we were in Colombia, it was absolutely teeming with wildlife. It must be a great place to live for an animal and nature lover. I hope everything goes well with your radiotherapy/radiation treatments. I had some discomfort from them, but the treatments were easy, and even relaxing. As far as books go, I still admire the fact that you post here in English. I could never do the same in Spanish.
Kathy28A, It's encouraging to hear that your sister is occupied, positive, and swimming. When I went through chemo, I could clearly feel that exercise and any kind of sweating helped me "clear" the chemo toxins more quickly from my body, and I was lucky not to suffer from many complications from it.
Mary, your posts make me remember to be grateful for my husband - at the same time that I think I'm too dependent upon him. He happens to be great with cars. If you lived nearby, I'd send him over to look at yours, and he would be happy to do it.
I'm so sorry to hear about your neighbor. It sounds like it was a terribly sad event.
It's ironic that you mentioned Lonesome Dove, because I'm a huge fan of The Evening Star, by Larry McMurtry, (but not the movie). I heard it as an audio book and I'm not sure it would have the same impact otherwise. It does include death and cancer, but great storytelling transcends subject matter there. I always intended to read more of his work.
As far as reconstruction goes, at this point I wonder, what if I could see the future? No one knows how much time they have, and what if I waste time on that? Anyway, my latest concern is ongoing shoulder pain/discomfort, particularly at night, on my cancer side. It feels like a pulled muscle or a tear, though both shoulders have given me trouble. Apparently this can be a common post-mastectomy complication. I'll be asking my oncologist what he thinks about it.
Val, I am so sorry to hear about your friend, Kim. It does sound like she did a great job making the most of her life after breast cancer. I hope that idea is some comfort to you as you grieve for her, and of course, we are here for you, always.
Pam
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Hi Mary,
Our cruise is out of NJ and we visit San Juan, Bermuda,
St.Maarten and Labadee.Labadee is a private Royal Caribbean resort in Haiti.Sometimes I feel a little guilty about that Port if you know what I mean. My chest is finally healing-it was a mess from radiation.I am getting excited for the cruise and praying all the grandkids resist any colds.My oldest grandson is getting over pneumonia.
I am looking forward to going back to work but wonder how I will get up at 530.I also worry about fatigue.Talk to you soon!
Love,
Rhond
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Hello Mary,
I was interested in what you had to say about your brother-in-law with colon cancer that had spread to the liver. I think the colon was where my older brother had his primary cancer, although when I told one of the consultants treating me that I thought this, she said that she thought primary colon cancer would be easy to detect. I remember on my brother's death certificate that it said he had died from "disseminated adeno carcinoma – primary cancer unknown". The adeno carcinoma referred to cancer in the liver and pancreas. I remember my brother being told, after scans, that shadows had been found in the liver and pancreas. He was offered chemotherapy but told it would not help him much. He declined it and survived just a few weeks. That was back in 1995 and now I have all sorts of doubts about it. I do wonder what was really wrong with him and whether all the drugs given to him during those weeks really killed him.
For a long time we have been told that when tumours have spread to other organs, metastasised, they cannot be operated on. However, I think they do operated today, so how come? It is all a bit of a mystery.
I suppose the only way to see what is going on in the lungs would be a simple x-ray or scans. The best thing is just to focus on the fact that all is well today and not to torment yourself with 'what ifs'. You are a long way from when you used to smoke and the chances of anything happening become more and more remote every year that you are away from the time when you smoked.
I do hope you get good results from your bone density scan. Back in 2005 I was advised to take bisphosphonates to treat osteoporosis, but I just ignored the advice. I am never going to take bisphosphonates. They cause a lot of damage and cause bones to be even more brittle because they stop new bone from forming. In addition, there is the problem of necrosis of the jaw. I just take Solgar Complete Bone Support (calcium citrate) and Solgar Vitamin D3. From time to time I take a magnesium citrate supplement. I am disappointed that, at the moment, I cannot find the soft gel 5,000 IU vitamin D3 supplement that I have taken for years. I am also still taking natural strontium citrate. At the doctors they like to prescribe strontium ranelate, which I think this is lethal.
I shall write more later.
Love,
Sylvia xxxx.
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Hello Mary again,
I suppose it was a lucky break about discovering the parathyroid problem. I can understand how my oncologist decided to do this. I had a large tumour and on diagnosis had a CT scan and a bone nuclide scan, obviously to detect whether there had been spread. Both scans were clear, so she would have wondered why I had high levels of calcium in the blood. The medical people would know that the parathyroid gland regulates the level of calcium in the blood, and would therefore think that something had gone wrong with the parathyroid. Of course, having the problem, in addition to being diagnosed with breast cancer, was even more worrying to me. I was told I would need a SESTAMIBI scan to look at the four little parathyroid glands sitting on the thyroid. All of this was left until 2009, when I asked about what was going to happen with the problem. I can tell you more about all that if you want. I did meet someone else on the forum and we went through our parathyroid worries and surgery together. She also had breast cancer, but hormonal. That is Sam52 and we kept in touch for a long time. She is sixteen years since diagnosis. I hope she might post here one of these days. She does that from time to time.
Have you gone away for a break?
That is all for today.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your latest post. I am going to take a break but hope to post later on.
Fond thoughts.
Sylvia xxxx
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