Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sylvia,
Thank you for your good wishes for December 30th as I begin Taxol. Like you, I feel that once nerves are badly damaged they will not repair themselves. Mary's story and your own will at least encourage women to ask their oncologists for the full picture. This shouldn't be glossed over, even if, for most of us it's Hobson's choice - risk of breast cancer returning or coping with neuropathy.
Brexit, as predicted, has been poorly negotiated from the beginning. Europe is facing massive problems with France, Germany and the Netherlands trying to hold it all together. My son cruised around Greece last week and reported that he'd never seen a European country in such dire straits. Everything in a state of disrepair, shops and cafes empty. The Greek islands must be solely reliant on Summer tourism to stay afloat.
I noticed that BBC were reporting that we haven't made the progress in cancer treatment that was hoped for. It seems that the speed of diagnosis is critical to successful treatment and it's delays here that are the problem. I haven't experienced this. The delay between diagnosis and treatment is the issue that I hear most about. Without a meaningful cash injection on an annual basis, delays in surgery and chemotherapy will just become worse year on year.I do see a considerable amount of money wasted too. Many, many invented job titles which come with an over generous salary are a real drain on funds.Modern Matrons absolutely everywhere while nursing in a meaningful sense has been cut to the point of making hospital stays o worrying rather than healing experience. As always, those doctors, nurses and others on the frontline carry on doing the best they can.
Uplifting to see photos on the thread. Life is, after all, full of good things for many of us. The world is also full of kind and generous people. Easy to forget when reading the newspapers. I'm off to do something cheerful for the rest of the day.
Take good care of yourself and Raymond.
Love,
Gill X
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Hello again, Mary and others,
There is an interesting part in this article about whether some people are more at risk than others, and the answer is YES. One example of this is that people who have bad diabetes or even mild or moderate diabetes and already have some nerve injury from the diabetes, will obviously have a risk of it getting worse when we use nerve damaging chemotherapeutic drugs on you. A B12 deficiency is also a greater risk. If you want more details about increased risks, please read the article or watch the video to which Mary posted the link.
Dr Stubblefield was also asked about the possibility of reducing the risk of chemotherapy induced neuropathy, such as icing the hands and feet. He mentions how some people use iced gloves and stockings to help reduce the neuropathy.
Apparently there was one research carried out where doing this seemed to indicate that it might reduce the risk. This research only looked at it for paclitaxel (Taxol), one of the tubulin inhibitors. He does point out that this is not necessarily generalisable to other types if neuropathy like the platinum drugs. It does not appear that icing does not reduce the effect of chemotherapy, but who really knows?
The question was asked about what people can do who went through the treatment without icing options and some years on are having to deal with neuropathy. The response was that for some patients the neuropathy is permanent, sometimes it can improve and some get better.
I was wondering about 'get better'. To me that does not necessarily mean that the neuropathy disappears. It could be that it is just less bothersome. I have been told over the years that it is permanent. Apparently with the taxane drugs the side effects come on pretty quickly. With the platinum drugs the neuropathy etc. comes on more slowly. It may gradually get worse as the infusions continue and may get worse again after finishing treatment for about 6 to 9 months and then begin to improve. Again, for more details please see the article.
Finally, the doctor was questioned about complimentary or alternative treatments. Some of the answers are as follows.
Nothing really seems to work for numbness – because the nerve end is dead.
Pain is different because the pain is caused by the nerve not being dead, but going off and sending false signals. This pain may respond to medication. One medication mentioned is Cymbalta, the brand name for duloxetine said to relieve the pain symptoms of chemo induced neuropathy. Other medications mentioned for pain are gabapentin and pregabalin. Other older drugs mentioned are the tricyclic anti-depressants, nortriptyline and amitriptyline. It is stated that if these do not work you have to go to opioid type-medications. It is further stated that topical medications are sometimes used for pain, such as lidocaine patches.
Finally, some patients say that acupuncture and complementary medicines work for them.
The question was asked about diet. The answer was that eating well was always a good thing and keeping your weight down also a good thing.
At the end of all of this three things are listed that Dr Stubblefield says he would want the person suffering from chemotherapy induced peripheral neuropathy to know.
1. If you have neuropathy you want to make sure that it is neuropathy and not something else, such as carpal tunnel or pinched nerves, which have very different but effective treatments.
2. Know that there are treatments for neuropathy: "So, depending on what you have, physical and occupational therapy can be extremely useful for improving your function and your quality of life. Decreasing pain, making you walk better, less prone to fall, easier for you to dress".
3. Know that there are pain medications that can help a little. They may not cure you or make you totally comfortable, but they can make you feel much better.
That is then repeated:
1. Get the right diagnosis.
2. Get physical and occupational therapy.
3. Get pharmacological management if pain is the big problem.
I do hope this will help all of you with any problem you may have with chemotherapy induced peripheral neuropathy.
I hope this will help you to deal with this problem if you have it. During this past year I have tried to focus on two very important and I think common side effects of breast cancer treatment, namely peripheral neuropathy and lymphoedema.
That is all for today.
Best wishes.
Sylvia xxxx
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Hi Gill,
Good luck with the Taxanes. My three full doses left me with slight numbness in the toes but not, fortunately, in the hands. The toes do not give me any problem. My main complaint about the Taxanes was the awful taste in my mouth.
As for the reports on speed of diagnosis, they did say that breast cancer was the exception to the lack of progress. I think there is a very large problem of patients not wanting to bother the doctor. My friend who has cervical cancer got spotting more than 20 years after menopause but waited some time before going to the GP. But then we have GPs not wanting to bother the specialists! The report in the Times said that GPs should be referring people to rule cancer out rather than ruling it in. I remember when my husband first had oesophageal cancer in 1991, he went to the GP complaining of being unable to swallow and came home with a prescription for valium as he was 'suffering from stress'. I was furious and sent him back for a referral.
Ho, hum. I wish it would stop raining. Just had lunch with someone who is off to Cape Town for two months, flying off to summer.
Susie xx
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Hello Sylvia,
I've looked again at your treatment and noticed that you were given three months of Docetaxel. I will be given just three doses at three weekly intervals, so nine weeks in all. I'm assuming that you had four doses . Also, I have no idea about the strength of each dose I'm given, I'll ask this when I see my Oncologist. I know that dosage is estimated according to height and weight, but I do wonder if ideas about effective dosage have changed over the years and if the incidence of severe neuropathy has been fairly stable over the years. Mary's treatment was much more recent than yours, so the answer might well be yes.
I'm probably clutching at straws here, but patients in earlier years were sometimes over treated. My only real experience of over treatment has been in end of life care and not recently. In years gone by some oncologists viewed cancer as their own personal battle. Sadly, the patient became the battlefield. Thank Heavens for more enlightened patient centred oncolgists.
Sylvia, please don't answer until you have time and space, you've put in so much work already this week.
I'm off to do some research into the above. I'll let everyone know if I find anything.
Take care,
Love,
Gill X
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Hi Susie,
I have a Canadian friend with triple negative metaplastic breast cancer. She was misdiagnosed in the first instance as plain TNBC and suffered a recurrence fairly quickly. She'd gone through chemotherapy the first time with no sign of neuropathy. The second time, about 4 years ago, the platinum based chemotherapy was given. Again, no neuropathy. This lady is very active and drives the school bus come rain, snow or sunshine. I'm hoping to fall into the same category as both of you.
Your husband's GP was neglectful or plain frightened off by the wrath of hospital consultants who were sometimes known to make derisive telephone calls to GPs who, in their view, over referred. My GPs always refer in order to rule out cancer. So does my daughter. Can't imagine a consultant challenging her though, she a bit Doc Martin, to say the least. Hope your friend will recover well. I guess many of us are a bit nervous of awkward examinations. So many female GPs and gynecologists around these days though and I do think it makes a difference.
I remember you telling us about the cruel way in which the oncologist broke the bad news to you and your husband. Some doctors should never be allowed anywhere near patients. They just make an appalling situation so much more difficult to come to terms with.
Flying off to Summer! Oh well, some people have all the luck. That'll probably be you next Winter.
Take care,
!ove,
Gill X
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I've been asked to attend a Health & Well Being Clinic at Ealing Hospital in January (Tuesday January 9th -- a date that doesn't actually exist in this reality). I am going to say 'Thanks, but no thanks' anyway, even if they can work out when it is, since a lot of the topics covered do not apply to me: premature menopause, work, welfare benefits, dealing with family ... I have the book from Cancercare.org called Moving Forward, which covers all the same ground, and have even read it.
Anybody been to anything similar?
Susie
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Hi, Sylvia
I'm very glad to see that you have read the article where Dr. Stubblefield was interviewed. Much of it we already knew, but I never heard described the difference between the effects of the platin drugs vs. the taxanes. Not really applicable to us, but still, I was curious about that and was glad to hear it explained and also glad that someone is interested enough to study the subject.
I'm also glad to see that Dr. Stubblefield explained that different people can get different forms of neuropathy, and yet it is all caused by damage to the peripheral nerve. Thus you, Sylvia, have strange sensations in your feet, and I have tingling and burning in my feet and also in my legs, but not all the time. I also have weakness in my legs that was explained as part of my neuropathy symptoms by the doctor who did my nerve test. I do not have pain for the most part, although the pain in my knees and back is exacerbated by the neuropathy, I believe. The doc who did my nerve test told me that my case of CIPN (chemotherapy induced peripheral neuropathy), was actually peripheral, motor and sensory. He also told me that any setback, such as getting the flu, would bother me more than it used to do, which is very true.
I was offered every drug that is currently available to treat the symptoms of CIPN . But it was my General Practitioner who told me that the drugs treat diabetic neuropathy well, and the drugs treat painful neuropathy pretty well. But, they do not treat what I have well. Which is numbness at times, tingling and burning at times, and weakness in the legs. I have a diabetic friend who says that if he does not take his drugs, he feels as if he is standing in hot coals, all the time. My burning pain comes and goes, so I don't want to take a pill for it. At any rate, the weakness is the thing that affects my life the most, and there is no drug for that.
I agree that there is not scientific consensus whether or not icing the feet and hands helps. It is up to the individual to decide if they want to try it, or not. I started the process too late, so I will never know for myself.
What I wish and hope for is a treatment for cancer that does not have so many side effects for some of us. And then someday maybe there will be no cancer at all.
Talk to you later,Love, Mary
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Morning Susie,
Had to laugh about the date. I did read parts of the book, a!ong with a huge number of booklets and leaflets given to me on diagnosis day, just so that I could be on the ball if questioned later.
No-one here has mentioned any kind of follow up courses, though we do have a new Big C centre situated a few yards from the chemotherapy unit where advice is available throughout the week without the need for an appointment. There's a nurse for medical advice, moving on from cancer etc and trained volunteers who understand our very complex and difficult to access benefits system, along with other volunteers who help fill in HMRC forms.
Take care,
Gill X
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Hello Gill,
Got the call-back from the hospital this morning. It was Tuesday January 8th, I said I wasn't going to come, expecting at least a brief argument, but she just said, 'Oh, okay.'
Your Big C Centre sounds very good. Something that other hospital trusts should explore, by the sound of it.
Actually, there was a very interesting letter in the Times this morning about the UK's supposed lag in cancer treatment. It pointed out that earlier diagnosis inevitably leads to longer survival rates, a point I have seen made before. It seems that by different criteria, UK Oncology is doing just fine.
Susie
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Hi, Kath
Your amazing trip does sound fabulous and exotic. What a nice break.
The pics you posted look rather apocalyptic, I have been seeing articles and photos about the severe drought in Australia. I do hope there is some relief soon, that is very hard on people and animals and vegetation.
Congrats on doing well on your masters' and good luck with exam results, I am betting it will be good news!
Talk later, love
Mary
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Hi, Gill
As you approach the time to begin your taxol treatment, remember that the majority of people do not get permanent neuropathy. But I think there is a large enough contingent to take any precaution possible, if you want to ice feet and hands, no harm done in my non-scientific opinion.
I believe Sylvia had her Docetaxel given over 12 smaller doses, which seems to be the norm these days. Given in smaller doses, it is supposed to be less apt to cause side effects.
I wish mine had been done like that. I was not an informed patient at the time though, because my regimen was started very quickly. My MO tried to do all drugs together, and the first dose was too much for me. Then they were split, but I had 4 more large doses of Taxotere by itself after finishing the Adriamycin and Cytoxan. It's all hindsight now though, in my case.
I saw my acupuncturist yesterday, and he worked on various things, including the neuropathy. I believe it helps me more than anything else.
You sound quite perky, treatment must not be bothering you too much!
Talk soon, love,
Mary
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Hi Susie,
The Big C do so much good work in Norwich. I remember how many relatives of patients in the hospice were helped. HMRC could be utterly ruthless in pursuing cancer patients who hadn't completed tax returns in time, for example and I'd happily point worried spouses in the direction of the Big C centre. I'm not entirely sure where the funding came from, but the building is likely to be the result of fund raising by the Big C while the nurses and manager are funded by the NHS. The new hospice will be built entirely by charity fundraising while staff, meds and equipment funded by the NHS. Guess it's the only way forward when a Trust is broke.
Statistics! UK oncology seems to be excellent in some areas and in dire straits in others. I really never expected to hear that a cancer patient would be asked to pay up or wait six months until the funding arrives, as in Flora's mum's case. I had a battle too. Diagnosis times in Norwich are very good for breast cancer. Wait for surgery is 62 days.
At least you got the date for not going sorted. I wouldn't have gone either.
Gill X
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Hi, Susie
I have not been invited to an event like yours on Jan. 9, it sounds like they are trying to cover all bases and provide a seminar for cancer patients. You are quite informed already, so it probably doesn't interest you. I do think it is a good thing to try to educate people on the many aspects of life during and after cancer treatment, because a lot of people really don't know anything about these matters.
How is your hair doing? I don't recall if you have mentioned it.
I'm so sorry about your husband, it sounds like he had a rough time. And to be sent home with Valium while suffering from all these things is just awful.
Talk to you later, love
Mary
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sunrise this morning.
This is not showing up nearly as vivid as it was.
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Hello Gill,
Thank you for your post to me on November 27th. First of all I do not think it is very useful to compare one patient's chemotherapy treatment to another patient's. Although we all have more or less the same chemotherapy drugs it is the oncologist who decides on what exactly you need and how much. As far as my own treatment is concerned it was given every three weeks. For each infusion the dose would have been given based on my height and my weight. I am 5 ft 10 ins and am slim at 153 lbs. These details were taken before I started treatment. I had a large tumour, 6 cms+ , so that would have been taken into consideration as well. You must remember as well that I had my chemotherapy treatment before I had my surgery, and there was a reason for this. Because of the large tumour the chemotherapy was given first in order to try to shrink the tumour to make surgery easier. I had three months of epirubicin and cyclophosphomide every three weeks, and then I had three months of docetaxel (Taxotere) every three weeks. The size of the tumour was regularly measured and it did shrink some, but it did not disappear completely. I finished chemotherapy towards the end of April 2006, having begun about mid November 2005. Everything went smoothly and I never felt unwell. I carried on my life normally and just felt a bit fatigued.
At that time I do not think that they did treatment weekly or two-weekly.
I then had my mastectomy about May 17th, and at that time was kept in hospital for five days until the drains were completely clear and were able to be removed.
As you know, from my details, my breast cancer was invasive ductal carcinoma (IDC) which is the most common one and is used to describe breast cancer of no particular type.
You will see that your tumour is much smaller so probably you will need less chemotherapy, which is a good thing.
When I had the mastectomy I had seven nodes removed and just the first node, the sentinel node, was positive.
When I had recovered from surgery I had radiotherapy, three weeks of five days a week, with boosters integrated into the treatment.
Before and after treatment I had a CT scan, a bone nuclide scan and an ECG. I was told all was fine. Soon after that I had an appointment with my oncologist and breast cancer consultant surgeon together and was told that I had an excellent pathology report and was NED.
Before you start your chemotherapy you should ask how your dosages are being calculated and whether it is still done according to weight and height.
I had no problems during my treatment, except that after surgery I noticed a bit of hand and arm swelling and was told it was lymphoedema. That soon disappeared and I just thought no more of it until I noticed a bit of swelling in the right arm after a flu jab in the left arm in October 2017. It quickly got under control and the slight swelling that I shall always probably have does not bother me.
As for peripheral neuropathy, I would think mine is not that bad. It does not bother me and I can live with the numbness. I did not notice the problem with the feet until I was going through radiotherapy.
I know that compared to some my cancer journey was not that bad.
Lymphoedema apparently can be caused through surgery, chemotherapy and radiotherapy. It is a chronic condition.
As for neuropathy, my oncologist told me it was caused by taxane drugs. We now know how the taxane drugs cause neuropathy.
In addition, we now know that the platins also cause neuropathy.
I do not think I was over treated. I would think if you got an overdose of these toxic drugs you would certainly know it.
That is all for now. I think you will feel much better when you get the taxane treatment started.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post and for the beautiful photograph. We need photographs to cheer us up through autumn and winter.
I shall write more later.
Love.
Sylvia xxxx
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Hello Mary,
I share your view that it is interesting to know about the different ways that the taxanes and the platins affect the nervous system and cause peripheral neuropathy. Knowing this, I cannot really understand why some of the chemotherapy regimes have both taxanes and platins, so that you can end up with numbness from one and pain from the other!
I think GPs will always come up with medication to treat anything you got to see them about! I do not really believe that there is anything that can deal with the pain or numbness from damaged nerves. I have a friend who has permanent pain from shingles and it seems the best thing to help this is probably lidocaine but when she asked for it she was told it was not available. Apparently lots of it goes to tattoo parlours, if you can believe it.
As for icing the feet and hands, I suppose there is no harm in trying it but it does seem a bit of an ordeal.
I think with cancer the effort has to be with prevention and trying to eliminate the risks that are in our control to eliminate. I think stress is a big factor in making a lot of people ill with these nasty chronic illnesses. There is too much emphasis on money and non-stop consumerism. I do not think there will ever be a magic bullet.
There is a lot of trouble in the UK because the government has messed up Brexit. I think people voted for it to control our borders and to be a sovereign country, but our country has been bullied and Theresa May has been too weak. Apparently there are over a hundred thousand vacancies in the NHS. Why have we not been training our own people? The government is now going to bring in people from all over the world to fill these. We are being told EU migrations will be limited, but not the immigration from elsewhere in the world, where we shall be taking in as many skilled people as we need. These people are needed in their own countries.
Last night I watched a programme about a luxury hotel in London, where people pay £22,000 a night to stay. There is a daily 'afternoon tea' event where people pay £65 for tea, minute sandwiches and small pieces of cake! I found it totally obscene given that we have thousands of homeless and rough sleeping people, lots of poverty but the government does not seem to care.
That is all for now. Have a good weekend.
Love.
Sylvia xxxx
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Hello, Mary
Yes, I'm sure lots of people find these clinics useful. I just don't think that I would. Any more than I find Maggie's useful though I know it gives comfort to many women with cancer. My friend with cervical cancer went there at the end of her first day of treatment to have a cup of tea and a quiet cry.
My hair is growing -- gathering pace now, I think, though still quite soft and fuzzy. It's like stroking a short-haired cat. I'm mostly wearing my beanie as it's warmer than my wig and more likely to get me a seat on the tube.
Susie xx
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Susie,
Good for your hair, I did like mine when it came back and was short, curly and silvery-gray. Now it has very little gray, and is back to its' blondish-light brownish. I like that you are using it to your advantage while getting around town!
Mary
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Hi, Sylvia
I was going to tell you that Thanksgiving weekend for me was filled with people and food. The day before shared a meal of pheasant, and wild turkey with potluck side-dishes. Thanksgiving Day itself shared turkey and all the usual side dishes with step-son and family. His mother-in-law makes the most beautiful, large pies ever. This year she made chocolate cream, apple caramel, and banana cream, oh, and a pumpkin. All home-made, very large labors of love. She told me that although she is diabetic, she makes these once a year because she likes doing it. I did try 2 of the pies, very good but very rich. The next day it was to my brothers' for turkey, venison steaks, and a small pork loin. I made a sweet potato dish, quite healthy with a very little brown sugar.
On Saturday I went to the movies with sis-in-law. We saw "Bohemian Rhapsody". I don't know if you like the music of Queen, who are from UK. It was good, the movie did not make a big deal of his personal life re: sex and drugs. It was mostly about how he met the band, and became a member, and how they put songs together and how he became Freddy Mercury and the band became Queen, and interspersed with a lot of music. It was a matinee and there may have been 20 people in the theater, just the way I like it!
Speaking of music, the Rolling Stones are coming to the USA, amazing that they are still touring. I was checking out tickets yesterday, there were cheap seats but those were in the nose-bleed section of very large arena. The tickets I wouldn't mind having were $700! I am not paying that, hoping something will go on sale, but I doubt it. I did go to one of their concerts once, and amazingly it was over 40 years ago!
Today is warmish, and it promises to get colder tomorrow, so I will put outside a few Christmas decorations today.
I hope you and Raymond are well, and I hope that watching the news does not drive you too crazy. I have quit watching, it is just watching a bunch of people saying the same things over and over ad infinitum. I read my news for the most part, and if I am home I listen to the radio a lot and hear things there. As for the 22,000-a-night London hotel room, I can't imagine what this room must be like. As for conflating it with too many people in poverty, there is no guarantee that if the government had that money they would spend it on homeless, poor people. In my opinion government is quite good at wasting tax dollars.
Alaska has had quite a large earthquake not far from Anchorage, and we were in Anchorage in September. That must have been frightening, and it caused quite a lot of damage, I have watched some video footage of the event's effects.
Off for now, and I will talk to you again soon.
Love, Mary
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Hello everyone,
Just been discharged from the Acute Medical Unit after sepsis. Intravenous antibiotics worked quickly once the nurses found a vein that still worked. Wish I'd been allowed a PICC line or a port at the beginning. Huge difficulty in getting blood from me now and no chance at all of getting a cannula in for chemotherapy.
As I was having breathing difficulties, one of the duty doctors organised a chest x-ray. An on call Oncologist visited me this morning and told me the X-ray was completely clear. On arriving home I read my discharge letter and found that I actually have a left pleural effusion, my cancer is or was on the left. The on call Oncologist suggests that my breast Oncologist repeats the X-ray after my next chemotherapy session. I'm furious that when Michael, (husband), and I asked if the X-ray was clear we were not told the truth.
Not my best weekend and I really hope everyone here has managed to have fun, or at least a few hours of peace in a warm place.
Love to all.
Gill X
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Hello Gill,
Sorry to hear about your rotten weekend but at least the sepsis cleared quickly. Above all, you still sound determined and chipper which is so different from when you were first diagnosed.
Stay well,
Susie
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Hi, Gill
Wow, I'm so sorry this happened to you. Sepsis is nothing to mess with, so glad it's cleared up. I don't know what could be going on with the mix-up about your x-ray. I hope your breathing is better. I also hope that the on-call Oncologist went ahead and ordered an x-ray after your next chemotherapy, that would save you having to tell the story again to another doctor.
I know when I first learned I would have chemo, the surgeon told me that a port would be placed in my left chest and I wasn't asked if I wanted it. As it turned out, I was glad I had it. I hope now that you are home and resting you will heal up so you will be ready for the next time.
Hugs to you........love, Mary
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Hello Mary,
Thank you for your post on December 1st.
It sounds as though you had a really nice time for thanksgiving.
I do know a little about the music of the group Queen and Freddy Mercury. I do love his song entitled Who wants to live for ever?
It does amaze me how the Rolling Stones keep going, especially Mick Jagger.
Raymond and I are well and we do not let the news get to us too much. We think we have had a better life here in the UK than future generations will have. The country is in crisis and there are so many problems. We think it all started to go downhill with Tony Blair and has got worse and worse with David Cameron and Theresa May. We need a strong person to come in, form a new party that truly represents ordinary people. Our country is too antiquated, lives too much in the past and cannot seem to get into the present.
I think you are right about governments wasting money. They take taxpayers money for granted.
It is another wet and windy day here in Exmouth and the news is as gloomy as the weather.
That is about all for now.
Love.
Sylvia xxxx
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Hello Gill,
I was sorry to read that you had just been discharged from the Acute Medical Centre after sepsis. How did you manage to get sepsis? I know it is a serious bacterial infection that spreads throughout the body and causes an exaggerated immune response. I was glad to read that the intravenous antibiotics worked very quickly. Was the sepsis caused by chemotherapy treatment?
It sounds as though your veins are in a bad state and that you will have to have a PICC line or a port installed. These, too, can have their problems, namely infection and they have to be flushed out regularly.
I think if that were me, with reference to a left pleural effusion, I would want to have another X-ray before the next chemotherapy session. I cannot understand why you and Michael would be told that your X-ray was clear when it clearly was not. You also need to know what caused it. Was it the sepsis? I know that sepsis if not treated properly can lead to widespread inflammation and organ damage.
Once again, I am wondering about the state of the NHS. Everything seems to be so vague. The friend of a friend of mine was not feeling well, went to see her GP, was told she had a stroke and had to get to hospital. At the hospital she was told she had not had a stroke, was kept in and then told she had a chest infection. The consultant treating her would not give her antibiotics and told her to let her system fight the infection, then sent her home. At home she got worse, went back to the hospital, saw a different consultant who said she urgently needed antibiotics and gave her some. She also told she had atrial fibrillation and was put on all sorts of medication. She has gone from an active person to not feeling well all the time.
A woman in the apartment complex where I live got sepsis during a hospital stay and I keep hearing about sepsis cases on the news.
I do hope you are feeling better now and will have a good week.
Love.
Sylvia xxxx
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Hello Sylvia,
Apologies for the long delay in my responding to you.
For Metaplastic cancers size of tumour is not a factor, unfortunately for me. At 2.4 cms I'd considered myself very fortunate. Grade is significant and I'm unusual in that not only did I present at grade 2, but remained grade 2 once the pathology was completed following mastectomy.
I became interested in dosage/duration of chemotherapy given, as in the UK, 6 doses is fairly standard, and I'm extremely grateful for that, as our oncologists do seem to consider health and wellbeing after chemotherapy nowdays. I absolutely couldn't have managed dose dense chemotherapy, but suppose that it might be essential in some instances. Whole breast radiotherapy in the UK is so often 15 doses, whereas in North America it's not unusual to have 30 sessions of radiotherapy, sometimes more.
Last week I spent some time looking at Adaptive Chemotherapy. I had intended to research in more depth this week but have to rest for a while. Sepsis responded astonishingly quickly to IV antibiotics and I was treated immediately. I do have to inject myself with Filgrastim for a week, but will then be tested to see what my white cell count is. I'm more than happy with with this as I don't want any medication that isn't essential.
Oh well, no-one ever said this would be easy and I do think you may be right about once I'm on the taxol part I'll probably feel much better about the whole thing.
Love,
Gill X
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Hello again Sylvia,
Our replies to each other seem to crossed over somewhere in cyberspace.
The duty Oncologist believes I may well have had a virus and due to low white cells i became ill very quickly. I had a blood test for liver and kidney function which came back clear. I could only take shallow breaths and had pain below my left rib by the time I called the Accute Oncology Team. My temperature had risen from 36.8 to 38.3 very quickly. I was very impressed by the speed of treatment this time. I was put on IV antibiotics immediately and once the blood test results were in - again, this was extremely fast - I was given a much stronger antibiotic. I will be taking antibiotics in tablet form for the next week.
I've heard of experiences like that of your friend and I do sometimes wonder if some Doctors are operating an unofficial policy of ageism. Misdiagnosis seems to be increasingly common in the over sixties. The withholding of antibiotics for serious chest infections is also common . There's been so much overuse of antibiotics by some very irresponsible GPs and vets over many years, despite desperate pleas from scientists, that we're all suffering the consequences, older people more than most, it seems.
I've been in touch with my Oncology nurse specialist and we're both hoping that the small pleural effusion is a result of a chest virus rather than lung mets. Perhaps the on duty oncologist looked at the x-ray rather than the radiography report. I'll need another chest x-ray very soon. I've never been entirely sure about the safety of chest x-rays and my generation were given so many.
I really should be catching up with the housework this afternoon, but don't feel particularly motivated despite the guilt.
Speek later,
Love,
Gill X
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Hi Susie,
I have to admit that I'm worried about lung mets. Really shouldn't have googled pleural effusion with breast cancer. Some of us never learn.
Hope you're out and about enjoying London at Christmas.
Keep us up to speed with your hair. Wondering about your nails too.
Keep warm,
Gill X
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Hi Mary,
My oncology specialist nurse will be meeting with my usual breast Oncology Doctor this afternoon,so I should have more idea about when the next chest x-ray will be. The waiting is difficult. Guess that many many of us have to experience the dreaded wait for results though.
I did ask for a PICC or port at the beginning, just seemed sensible. Chemotherapy is bad enough without the added pain of being stabbed again and again.
I was stunned by how quickly the IV antibiotics worked and very grateful that action was taken immediately. My Oncology nurse drummed into me that if my temperature rose above 37.5 I was to call Acute Oncology immediately. She once had a patient who thought she could hang on for a while and she became dangerously ill very quickly.
Your Thanksgiving holiday sounded like great fun with lots of good home baking. Maybe it's just me, but I always find Christmas a bit fraught, apart from Midnight Mass. I'd happily move the feasting to November and have much quieter Christmas day.
Talk soon, keep warm.
Love,
Gill X
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Hi Gill,
It is the season of viral infections and you would be particularly prone to them with not having had Filgrastim from the start. I shall keep my fingers crossed for you, though.
New nail growth is still coming through quite soft but there's stronger growth below. It'll take a few weeks, I think.
My radiotherapy sore is healed now and I set off for Pilates this morning, only to find that it had been cancelled as the trainer was ill. Grr.
I would rest and let the housework go hang!
Susie x
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