Calling all triple negative breast cancer patients in the UK
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Hi, Hanieh,
Thanks for wishing me well, I do feel a bit better. It's very cold and icy here today though, probably will be forced to be inside another day. That might not be a bad thing!
I am happy you got the car you wanted. To me a car means freedom, I dread the day when I will not be able to drive for some reason. I have an SUV and a truck, right now they are covered in ice and I am itching to go for a drive but we are supposed to stay off the roads.
I hope you have many happy travels in your car, do you use it a lot in the city, or do you prefer to use mass transit sometimes? I have no idea what is available in Tehran. I live in the country so I have my car, my truck, or my feet. In the closest city to me, which is 30 miles, they have buses and taxis.
Have you heard about your friend's results of lumpectomy?
Talk to you soon, dear Hanieh.
Mary
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Hello everyone, I live in Cali, Colombia, Im 53 years old.
On October 31 I dreamed of my father, who had died 11 years ago, and tells me in the dream, "Nena has breast cancer." Stay awake and alert ... I have been very tired in the last years and with a pain in the upper part of the belly on the right side. So I had some liver exams and biliary exams but I had not returned the mammogram since 2012. I had the low white blood cells in 2013 and I went to the hematology, but I did not know why. The fatigue continued, and it was getting worse. In August I started a headache that was initially thought to be the glasses, I suspended a mastery study that was advancing, and change three times of glasses. The ophthalmologist said everything is fine with his eyes, so I made a cerebellar and also went well. But there was the headache, the pain in the side and if some activity was totally exhausted. So with those words of my father in the dream, stick to the ceiling. It was already November 1.
That same day I asked for an appointment with the family doctor who sent me the mammography, they did it to me that day at 6:30 pm, I hardly got to the appointment because there was a huge trancon. So the young lady who took care of me, treated me aggressively, scolded me because I did not choose the correct position in front of the mammogram from the first moment, but I do not care, she told me, I have to run with this.
I was told that on November 15 I got the results, but on Saturday, Saturday, at 5 pm, the results arrived in the mail, saying that it was a Birads 4c. I remained in schock, I could no longer doubt my father's words. So that day, call my mother who lives in another continent to my brothers who live in other cities.
I live alone, so I said good to move then !!
Go back to where the family doctor, who immediately sent me to do the biopsy, on Wednesday November 9th I did the trucut biopsy, in the surgery room, the fear caused my blood pressure to rise.
The most difficult thing until that moment had been not having close people with whom to speak, in a more humane way. When I said I'm waiting for the result of the biopsy, I've been told, "is that you have to solve a problem with your mom" "with your dad" "with one of your partners" "is something you have not healed from the past." .. etc. Go support to go to the very same fuck, or I seek the cancer .. when I thought to tell a psychologist, then, a small child that gives cancer, which is what I had to heal ... tells me ... because ... it is that when he was going to come to this world he decided that he would give him cancer as a child ... hp, that is, it is the fault of one who has cancer .. so I did not find people with the Which I could talk about that did not make me feel guilty, that I had gone to the sky market to buy the cancer.
I asked for vacations, how can one be working and go to the medical services, ask for appointments, authorizations, rows, etc. while working. The first five days after the pathology left me incapacitated. The pathology was infiltrating Carcinoma, nottingham 8/9 and histological grade 3, something that I do not know what it means so far.
Then go back to the oncologist, who sends a hypo-histochemistry, then you have to go through the tissue samples to the first laboratory that did the pathology and take it to another. The delivery of these fabrics are made in paraffin cylinders and some plates ... but it takes ... about 20 days if they do it between laboratories and if you go and do the rows, management, order, The letter, etc, about 6 working days ....
While those days were good, I went to the swimming pool, to the sauna, to walk, to listen to audiobooks, and to do the sistica to each activity, I felt very good, more rested, as free without having to go to the office.
After an aunt, I invited me to a farm in a cooler area where I live, to talk about all that was happening to me .. but I also invite other cousins that I did not see more than 30 years ago ... so I do not I feel very good neither the weather nor the company, we were in another synchrony, I thinking about what I'm going to do and them on vacation ... So I can not talk much of what happened to me, my aunt had an immense cold so I I fish it and go back to my rather constipated city.
Finally I already have the result of the second laboratory already says: triplenegative and Ki67 present at 35%. Oh ohhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
I have a sister who, since I told her that I had done the mammogram, says to me, "Tranquility is nothing, trust in God." Every day sends notes of religious things, but she does not call me or write to me to ask me how I am ... I will be very sensitive and I expect more from the family, what a mistake, being single, being 53 and living alone.
Now since I know it is a triplenegative I have been tearful, sensitive ... And I feel that I am not able to face what is coming ...
Well now, first I'm going to put a clip, get an aspiration biopsy of the sentinel lymph node, start chemotherapy and pray to God, let the chemo work.
I do not know if the clip hurts. Anyone knows?
In the last weeks have appeared and disappeared friends and friends .... I think it is better that they rotate so they do not burn with this situation ... so I try not to lie to anyone ... but I really feel very alone.
I started my first cycle of chemotherapy on 26 of december, take 24 hours. In the hospital 4 hours, and I carry one to home.. Before that I was introduced a picc catheter in the left forearm to pass me there the chemo. The week before a clip had been inserted into the tumor in the right breast to locate the site of the tumor in case it was reduced. Also I had a biopsy of a ganglion in the armpit that resulted without metastasis which gives me much hope. I also had a thyroid ultrasound that shows that I have two nodules on each side, but the oncologist said that we did not biopsy him but would start the treatment as soon as possible. With chemotherapy I did well, it's a chemo fac-t.
The first FAC or CAF, are every 21 days, for 24 hours, give me an infuser to take home and at 24 hours I return to have it removed, I have not felt very bad, just very tired. I exhausted myself quickly.
Now they have discovered that the cancer is also of Basal - Like Phenotype, so I hope chemotherapy will take effect. Because I do not want to face the situation that does not work.
My brothers came to accompany me and my mother arrived too. So I feel more emotionally backed. I have been incapacitated so I do not have to go to work, even so, the plans I have to do in the day, I often do not have enough time or energy.
I'm getting used to going out with masks, you do not go to public places like shopping centers, restaurants, supermarkets. I'm also getting used to not eating raw vegetables or not eating late night food. So nothing to cook and save for tomorrow everything is the same day.
There are days that I sleep well and others in which I enter an anguish that I am not able to sleep but I go to walk by the apartment. I'm taking cannabis globules with a dilution of 60. I take 4 and I think it has helped me.
Now the subject of the bathroom is complicated, because you have to turn the arm in kitchen plastic to enter the shower, I am trying to find here in Colombia a dry pro to use it during the shower but they do not sell it. Same as the one I've seen on the internet, goes from forearm to arm, like covering the elbow and my catheter picc, is only in the forearm.
Yesterday I went to the doctor place, and theadkerchief becoming to go out and I feel ashamedI dont know why exactly but the feeling was that. I dont want the other saw me, or saw my head with hair in one place and onother without it. Now my hair is going our so I cut it. But still go out and butter me in my neck and in my back, so today I went to buy a electric razor and I do it. Is really schock to see me without any hair.
On monday I will have my second quimio. I hope everything goes ok.
Have a nice time there.
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Hello adagio,
I am continuing my post in response to your last one. This is about immunotherapy, which has been much discussed of late, It sounds good, but when I look into it, I do wonder about it all. To quote the magazine. "Immunotherapy is medicine's great new hope for treating cancer. Described as a game changer. It harnesses the body's immune system to target only cancer cells- unlike chemotherapy,which damages the immune system by suppressing production of its white blood cells".
That sounds very good.
We are told that it works much better than chemotherapy and improves survival times. However, once again, we have the race to fast track drugs and make big profits. I do not like that.
I do not like the fact that, just as with chemotherapy, early deaths are commonly seen with immunotherapy.
I tend to think there is a lot of hype.
I do not like the fact that cancer patients with autoimmune conditions like rheumatoid arthritis, psoriasis and polymyalgia have been warned not to undergo immunotherapy, as it could trigger fatal allergic reactions. At least this is what I have read in WDDTY.
I think the email from Chris Woollams of Cancer Active has information about immunotherapy. I need to check it all.
More later.
Best wishes.
Sylvia xxxx
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Hello adagio again,
I have just had a look at the most recent email from Chris Woollams – Cancer Active dated January 9th. Do you still receive this? I do not know if you saw the basic contents of this email that I posted not very many days ago. There are teen main headings and then the sub-headings and topics to look at. I noticed that number 8 on the main headings was Co you thought these new immunotherapy drugs were the safe future of cancer treatment? Under this it says The nice safe alternative treatment; the new frontier; the fourth leg of orthodox medicine – or more dangerous than anyone is letting on. One thing is for sure. They are BIG MONEY for BIG PHARMA. Read the research.
Under this, beginning with an asterisk, the huge dangers of "wonder immunotherapy". The asterisk means that you have to click on this for more information.
I shall leave you to look this up for more detailed information but the beginning of the article says "In a worrying development, several top medical schools and main stream media have co-incidentally come out of the closet in recent months on the dangers of the new immunotherapy drugs."
There is mention of what has happened when two different immunotherapy drugs have been used in combination.
There is mention of the drug ipilimumab.
Yale researchers believe that thee wonder drugs can even cause a new type of diabetes.
On this same page there is printed "go to our comprehensive overview on immunotherapy". I have yet to click on this but when I do I shall let you know.
With the Chris Woollams email I tend to deal with it in three stages. One, I print of the email and read the headings and mark off headings with an asterisk. Two, I print off the headings that I have marked off. Three, on any of these pages I mark off "go to" and then print that off.
This is quite a lot of work, but as I have said many times, information is power.
I am reading through WDDTY and the Chris Woollams email at the same time. I have not yet read the articles about prostate cancer, but I shall do so as soon as I can.
Please let us know how you get on with your check up next week.
Fond thoughts.
Sylvia xxxx
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Hello All
Greetings and hugs to those going through treatment. Thank you Sylvia, Mary and others for keeping the thread going. Gmmiph I love your pictures and notes. We appreciate your encouragement. For those in active treatment this will pass, though it seems to drag. It was exactly a year ago I was in the chemo chair. Now it seems like a blur.
My arthritis is acting up along with neuropathy in my feet. So I'm using a cane. It's painful, but I'm scheduled for a cortisone shot in the offending knees. One is from an injury. The other basic deterioration. It has given me a glimpse of what losing my mobility would be like. I live a very active lifestyle, so it's very difficult.
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Mary glad to hear you are better. Hanieh so happy you got the car you wanted. I'm sure just going around a corner is fun in your new car. Welcome to Marias and all others. This is a very supportive thread. I don't post often, but read and 'lurk' a lot. Gentle waves to 4everstrong and any others i've not named.
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Hello marias,
I read your detailed post with great interest and I can understand all that you have been through and all of us on the thread will understand and send you our comfort and support. We understand all your fear and anxiety, but, like the rest of us, you will get through this. Now that you have started your chemotherapy you will find that everything will feel better than on diagnosis when you go into shock and have so many things on your mind. For the moment concentrate on getting through your chemotherapy and taking one day at a time. The chemotherapy regimen that you are on is made up of drugs well known to us all. You are going to be alright.
Losing your hair is a big shock to deal with, but you can find a pretty wig or a nice scarf to cover this.
You have already had one session of chemotherapy and you are now facing the second one, so let us know the date and let us help you to get through it.
Rhonda and Gina on the thread are still going through chemotherapy and will be able to tell you of their experiences. Kath has just finished her chemotherapy and is waiting to start radiotherapy. Chris has also just finished chemotherapy and is waiting to start radiotherapy. Just like them, you can get through all of this.
We have great people on the thread and we are all here to help.
Sending you best wishes from everybody.
Sylvia xxxx
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Hello Gina, Mary and Val,
Thank you for your interesting posts.
I am out of time and energy for this evening, so I shall post tomorrow.
Thinking of the three of you and sending best wishes.
Sylvia xxxx
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Wow, this thread is on fire, so many posts since my last one. I dont know where to start. I am a slow reader and i am afraid to make long posts because sometimes they get erased before i can send them.
Sylvia,
I like your friend's poems that you posted about helping and caring. You are one of the true examples of those poems. You are grateful with what you have and you continue to generously help and encourage others in your own way. There are many others here like you, oldies and newbies aike.
It makes me think that God probably has a specific reason for cancer patients. For me, cancer made us see things differently. It humbled us, made us more grateful and appreciative, made us realize what are the more important things in life, taught us to prioritize, to communicate, to help, to share, to care, to love and gave us the chance to convert and be closer to God.
If this is a preview of what heaven would be, then i am looking forward to it, of course, IN HIS TIME. I hope there's a Karaoke up there. Lol!
I read all your posts up to the last where you said you are out of time and energy. I cannot comment on all of those but i am much interested in immunotherapy. I am gonna watch and see where this topic leads to. I think it is a good approach to dealing with cancer. I honestly think however, that it might reach its potential in a distant future (after much trial and error) and in close combination with integrative medicine.
Rest well for now. God Bless!
Gina
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Hi Mary, thanks for your post. I am glad you are feeling a bit better as you said but i wish it to be a lot better. I wonder why you got sick for so long.
I used to wish for snow in our country before thinking that it might be fun but seeing on the news about how problematic and disastrous it can be, i am not that enthusiastic anymore.
Like Adagio said, i wish we could all be together, to care and look after each other, because we more or less understand what each of us have gone through. Wouldn't it be fun to drive all cramped up in Hanieh's new car in the icy streets, drinking beer and singing All You Need is Love by the Beatles? Lol!
As to why i delayed my MX and Chemo, the answer is Fear. Hang on, this is going to be a novel. Lol!
My female first cousin who is a physician, died of breast cancer after two years of surgery & chemo with her MO bestfriend. She was i think 46yo upon dx and Stage IIB like me. About a few months after her dx, my father was also diagnosed to have kidney cancer and had it removed. He was 68 at dx and was already Stage 4, upon his request, the family decided not to let him have chemo anymore. Both of them died, only months apart, with my cousin going first, within only two years!
From this scary experience, having seen both of them suffer, with one having chemo and the other one none, I sort of developed a fear for surgery and chemo, thinking that having my breast lump removed might hasten the spread of cancer in my body and that chemo would be useless against it. I carried that thought with me until my breast lump dx on Feb, 2016.
I had a mammogram finding in 2013 on my right breast but the result said that it is less than a centimeter and "probably benign". My left breast also have confirmed benign lumps.
Before my breast findings in 2013, I also have a myoma on my cervix for a long time which i was so worried because it made me bled profusely every monthly period i have, lowering my haemoglobin, forcing me to take iron supplements. When finally i decided to have it removed in 2013, the surgeon said that it was not an emergency and it would disappear upon my menopause. I was so relieved to hear that and in so much happiness, i ignored the mammo findings on my right breast which was "probably benign". From 2014 to 2015, i did not have any mammogram for various reasons, no time because of work, too lazy to go and the clinic moved to a farther location. So, when I finally went back on Feb., 2016, the mammo results was that the tumor grew to 2 cm and the findings now include the word "suspicious". That "probably benign" tumor is now apparently malignant, and the doctor's order was a core needle biopsy. Still carrying that fear of surgery and chemo inside my head, i did not listen to the doctor. About the same time, i met my former officemate who also had a breast lump, fearful of surgery and have been into a vegetarian diet for two years, on her own decision. She was reed thin from the strict veggie diet but she told me that her dieting and some herbal medicine shrunk her lump and indeed it was confirmed in her succeeding checkups and nammograms!
I was encouraged by my former officemate's story and i tried to do it but not exactly the same. I shunned red meat, sugar, coffee and soda. I juiced and ate lots of fruits and veggies, but i also ate chicken, live tilapia fish and shrimps. That was basically my daily diet. In addition, I also drank 28 pieces of calamansi juice which is suppose to be alkaline every morning an hour before breakfast for 28 consecutive days. I got this from a famous local spiritual leader who claims it to be an effective anti cancer drink. I lost a lot of weight, almost to the underweight level. All this for about 7-8 months, only to find out in my follow up mammo on August, 2016 that my tumor has grown to 2.5 cm, and so, i finally decided to have a frozen section MX. The rest is history.
I told you it would be a novel! Lol.
Ok, that's my wonderful story of romance with cancer. Talk to you again. Get well dear, i mean really really well!
Gina
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Hi Valstim,
Im glad you appreciate my picture gifs and funny posts. It's my small way of giving back something to all of you wonderful ladies and gents here. You know, if i could at least make everyone smile and relieve the stress...
I am sorry your arthritis is acting up. Is it already for a long time? I also have aching knees. I used raw turmeric for it and it greatly help ease the pain. I make fresh smoothies with a blender using an inch of raw turmeric, a few freshly ground peppercorns, fresh pineapple or papaya, a banana, a pinch of cinnamon, and a cup of fresh coconut milk. It tastes great and my arthritic knees felt better.
My other quick option is to peel and grate half an inch of raw turmeric, add about 1/4 tsp of ground peppercorns and mix it with wild honey to soften the strong taste.
I read that turmeric which has curcumin is anti-inflammatory and anti-cancer. Curcumin is easily lost when heated so you have to take it raw with ground peppercorns to enhance its potency. There are available stabilized turmeric/curcumin capsules too. I also read that turmeric compliments Taxane-based chemo drugs, so i am mixing it with my food since i just started on my Taxotere infusion.
Wish you the best,
Gina
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Hi marias! Welcome to this thread. The ladies here are helpful and wonderful. I hope you find answers to your questions here.
Wish you well,
Gina
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Hello Sylvia, Mary, Rhonda and all
I hope you are all having a nice Sunday. I like to listen to the Good Morning Sunday show on radio 2 before heading off to church. My husband and I are responsible for fellowship events and we are in the process of finalising preparation for our Burns Supper later in the month. For anyone who might not know of Robert Burns - we regard him as our Scottish Bard and every year we celebrate his work by holding a supper in his honour and listening to recitals of his poetry. Many of his poems are now songs - Ae fond kiss and Ye Banks and Braes O Bonnie Doon are two of my favourites.
I'm hoping that after the service today our congregation will be lining up for their tickets as I feel that we may be very preoccupied for the next week or so. You will know that my breast surgeon will see me on Tuesday after I finish at the one stop clinic. I'm delighted to tell you that he has also brought forward the date of my surgical appointment from15th February to the 18th of January. I am so grateful to him for this but I know that lots of people are not able to push for things the way I do - in part its because of our own nature/personalities but also in our culture we want to remain polite and wait our turn! However, I want to urge people to push for things - be direct and ask. Most of the time we are not asking for special treatment but only asking to receive best practice (if we look at the NICE (England, Wales and possibly Ireland?) and SIGN guidelines (Scotland) we can learn about what care pathways and treatments we should expect). Whilst we need to become more informed we also need to take a much more active part in our own healthcare decisions.
You asked if I felt there are differences between Scotland and England heath care provision Sylvia. Without doubt there are differences and in my opinion we receive much more care in Scotland - I won't say 'better' care as that would imply that healthcare and social care provision/delivery outside Scotland were somehow not as good. This of course is not the case ever. I think the Scottish government has its priorities right - Education and healthcare. As key priorities these two areas are the ones that can address inequality and poverty more directly.
Anyway, I have surprised myself at my rambles this morning (I really did have a great sleep last night!). Have a lovely day everyone.
Maggie
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Hello adagio,
I just wanted to let you know that I have just printed off the rest of the information from Chris Woollams of Cancer Active. It is entitled Cancer Active Immunotherapy Review – it is five pages long and just glancing at it I can see the new drugs are named. I shall read it all later, but I do believe these sheets are the best way to keep up with everything.
I do hope you are doing something relaxing this weekend.
Best wishes.
Sylvia xxxx
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Hello Gina,
Thank you for your first post on January 14th. I was sorry to read that you are experiencing some pains on your lower spine, hips and knees on day 3 after your first docetaxel and I do hope this will disappear. If it continues if it were me I would report it to my oncologist. Perhaps you might need to be on weekly docetaxel at weaker doses. I figure that since the amount of drug you get is based on height and weight, if you go to every week instead of every three weeks the dose must be divided by three for the weekly dose. I know that women on the thread have always said they seem to do better on a weekly regimen.
It is always interesting to read about other people's countries.
I do agree with what you say about corruption. I think it is everywhere. The information that goes to the people is always censored and we only get what the people in power want us to get. It is true too that people are not educated enough, especially politically. I do agree that people should give more thought to how they vote. In this country we had a referendum about whether we should stay in the EU. The people cast their votes and the majority vote was to leave. That was over six months ago and the government is still messing around and some politicians, who voted to remain, are trying to kill the people's vote and even to have a second referendum. We have a Prime Minister put in place by the votes of a handful of politicians, so she has no real mandate from the people, but she will not call a General Election. Nevertheless, they keep calling our country the mother of democracy! I think they have amnesia about our past history and all our colonial past.
I was interested in what you said about your MO and her explanation about the criteria for having radiotherapy or not. I do not think we have that criteria here. I was told that radiotherapy was the third part of standard treatment and it was there to mop up any stray cancer cells. It is, however, localised treatment, so I do wonder about mopping up strays.
It would be interesting to hear from others about any criteria for whether or not a patient has radiotherapy.
Best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I was glad to know you have read the article in WDDTY about chemotherapy and how lethal it is. I do agree that the chemotherapy time line chart is a real eye-opener and it is not the first time I have read about how chemotherapy was thought up from mustard gas.
It is a good idea to monitor patients undergoing chemotherapy for the first time, because there can be no knowing how they are going to react to these drugs. I think for older patients, at least in this country, the experts are thinking twice before giving chemotherapy. Some of the older people are deciding not to submit themselves to it.
I am not surprised at how unwell you were when the taxane drug was administered with the others. It was not on!
As I have said before, I think that often patients die of the chemotherapy drugs and not of the cancer, but I have read that chemotherapy is never put down on a death certificate as cause of death.
Time will tell about the new immunotherapy drugs and from my latest reading from Chris Woollams, the WDDTY magazine is not the only source expressing concern. In the Chris Woollams information sheets there seems to be particular concern about "The double hit combination of two different immunotherapies that oncologists have been praising". Apparently Yale Researchers watched a case where, with this double hit, a patient's blood pressure plummeted and blood sugar soared to ten times the maximum safe level! Apparently the unleashed immune system was attacking the patient's organs.
Apparently, also, 2% of patients had heart attacks with the double hit. There have been serious side effects even with just one immunotherapy drug.
Like you, I feel that prevention is the best way to go. There is no money in this. People seem to be reluctant to change their lifestyles or try to eliminate possible risk factors.
I do not envy you your terrible weather. I do hope your weather will change and the ice will start to thaw. Remind me again exactly where you are in the US, so that I can have a look on the map.
Wishing you better.
Love.
Sylvia xxxx
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Hello Val,
It was nice to hear from you and thank you for your posts. It is good that your chemotherapy treatment from a year ago is now just a blur.
I was sorry to read that you are in pain with your arthritis and the neuropathy in your feet. Do you use anything to eliminate these two things?
I do hope all will go well with the cortisone injection in your knees. I was talking to a friend of mine on Wednesday and she was suffering from a frozen shoulder and was preparing to go for a hydro-cortisone injection into the shoulder. She is a nearly 30 year breast cancer survivor and just had a lumpectomy and radiotherapy.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Gina,
Thank you for your latest post. Instead of writing long posts and sometimes losing them, you should write a shorter one, submit it, and then write another short one, and so on. It is so frustrating to write a long post and suddenly lose it. I have no idea why this should happen.
You say you are a slow reader so I was wondering whether English is your second language. You are so fluent when writing that it would be hard to tell.
I was so pleased that you liked my friend's poems. I think they are clever and very profound. Thank you for your very kind words. Thank you for your great effort on this thread.
I do feel that we have to appreciate the small things in life. I do not like the greed factor that we have in the UK. There are so many people that have far too much money and I cannot understand why they want it. They cannot take it with them when they go, and life is very short. We have a politician here who wants to cap what people at the top can earn, but everyone is saying it cannot work. At the moment the highest earners are earning 360 times more than the average worker!!! How can that possibly be right?!?! This particular politician wants the gap reduced to 20 times more than the average worker. Even at this gap who is to say one person's work is worth more than another's? We have a lot of people carrying out essential services and are paid little. Where would we be without our refuse collectors and cleaners?
I do love your sense of humour. It is so good to laugh.
In order to help you catch up, this is my second post to you this morning, so I am up to date with you.
You said you were interested in immunotherapy, so have a look at the post to me from adagio about the article in WDDTY and read the communication about this between me and adagio and then between Mary and me.
I think the future with cancer lies in prevention. Prevention is better than cure. If we are seeking a cure it has to be with a mixture and cooperation between orthodox, complementary and alternative. We have to get away from toxic and harmful drugs.
I hope you have a good Sunday.
Fond thoughts.
Sylvia xxxx
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Hello Maggie,
Thank you for your most interesting post. I hope everything goes well for your Burns Supper later this month, which I know is on Wednesday January 25th. Of course this date is well known in England, but it is good to inform others what it is all about.
It looks as though you are going to be busy with your appointments on January 17th and 18th and I do hope all goes well. Reading your post reminds me of myself. I do believe that you have to push for what you want and that you have to take care and take command of your treatment when it comes to cancer. I believe in being assertive and forthright and I have never been afraid to speak up. You are right about our culture, which is to remain polite and wait our turn. We all know the jokes about Brits like to queue. I agree with everything you say 100%.
I think you are right in saying that you receive more care in Scotland and that the Scottish Government has got its priorities right. Education and Healthcare should the most important priorities of any government that really cares about its people. I would also add housing. People should not be living on the streets.
I hope you have a good Sunday.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill),
I was just remembering that you popped in to say hello at the end of December to let us know that you were three and a half years since diagnosis and were doing well. I do hope all is fine with you as we go into this New Year and I hope you will keep viewing and pop in when you can.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
This is the timeline article that I mentioned from What Doctors Don't Tell you. It is very interesting and I hope that lots of you will read this most interesting magazine. It is full of interesting information about all aspects of health. It is well worth reading. or subscribing to the online edition.
Best wishes.
Sylvia
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Hello everyone,
I think you will probably need a magnifying glass to read the chemotherapy time line article. It was the best I could do.
I have been reading the rest of the Cancer Active information about immunotherapy. I know that adagio, Mary and I have been discussing it. The link to this third part, as I call it, is as follows:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3554
The title is Cancer Active Immunotherapy Review – the new frontier.
The other titles are:
Active immunotherapy.
Boosting the immune system to recognise the cancer.
The anti-PD1 Immunotherapies – Pembrolizumab and Nivolumab. The brand name seems to be Opdivo for Nivolumab.
New breed of immunotherapies remove the "check points".
CAR-T immunotherapy.
Immunotherapy for all cancers.
Immunotherapy – a "double hit".
Warning.
Immunotherapy vaccines.
Cancer immunotherapy and the need for gut bacteria.
Alternative immunotherapies 1-8.that is all for today
Immunotherapy, where next?
The history of immunotherapy.
Monoclonal antibodies.
A variety of treatments.
The complex immune system.
The microbiome – controller of the natural immune system.
I have just read the five pages of this last lot of information from Cancer Active. It is a lot to take in, especially along with the other pages of information, but it is there for you to read if you want. On the last page of this last lot, there is useful information about stimulating the number of white cells.
That is all for today. Wishing our American friends a relaxing Federal Holiday for Martin Luther King jnr day.
Best wishes.
Sylvia xxxx
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Hello alls of you!!!. I read your post Sylvia and I get nervous, I dont know is the protocol the doctor give to me is the better one.
First for four times, I will get FAC, that means: Fluorouracilo, Doxorubicin, and endoxan (Ciclofosfamida,Cytoxan,Genoxal) and then 4 ciclos of four of Taxil.
I dont have surgery they are waiting the tumor get small.
Tell me in there the protocol is the same.
Thanks
Marias
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Hello Marias
There is nothing wrong with the protocol that you are having. These are basic standard chemotherapy drugs. It sometimes gets confusing because the generic drugs have different brand names.
Doxorubicin, cyclophopsphamide, fluorouracil and paclitaxel is a standard regimen for chemotherapy.
I also had chemotherapy before surgery to shrink the tumour to make surgery easier.
Concentrate on getting through your chemotherapy. This is the longest part of the breast cancer journey.
We can support and encourage you all the way. You are going to be fine.
Sending you very best wishes.
Sylvia xxxx
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Hello Sylvia, I just arrive home from the hospital, I spend there 5 hours and send me home with infusor of doxorubicina for 24 hours. I Still feel good.
can u tell me what kind of examens the doctor send to u
my better wishes to u
Marias
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Hi Marias
I also was treated with the same types of chemotherapy drugs. I didn't have an 24hr infusion though. I went to the local hospital chemo department and I would be given the chemo via infusion and this would be finished within an hour to 1.5 hours usually.
The only advice I would offer you is to take symptomatic relief medications before you feel really sick or in pain. It's easier to keep discomfort under control that way. At the beginning I'd tried to tolerate the side effects thinking they would ease off in a few hours. That didn't happen so I learned to keep taking the medicines until I was sure the horrible side effects were diminishing.
You may find that you can get into a kind of pattern or routine after each chemo session and so you may begin to recognise when you feel the worst and learn to know how long before you begin to feel better. This can have a really positive effect when you realise you're past the worst. Just know that you will get through this.
I believe there are other threads specific to people currently getting chemotherapy you might want to look at?
Best wishes
Maggie
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Hello Gina,
You are so funny! Even on chemo, and putting up with all this nonsense, it's really awesome you have this great talent for humor.
After reading your story, I did remember hearing you pursued a strict diet for a while before treatment. But you refreshed the rest of the story for me, by telling of your cousin's death followed by your father's death, both from cancer, and how that affected your decision. I look back on my journey and I never questioned the chemo treatment, I was not educated enough to know that I could. But if I had to do it over again, I would still have chemo. I am not brave enough to not follow the accepted protocol. What I would do differently would be to go to a larger hospital somewhere that has more experts.
It seems you are handling this chemo trip very well so far, I am so glad for that. As for radiation, as I told you before, I did not have radiation. My MO told me I didn't need it. He retired, however, on the day of my last chemo treatment. The radiation oncologist thought I should have it, but I was having so much arm pain at the time that he decided the benefits wouldn't outweigh the risk of more pain. That is partly why I wondered about the knowledge of my MO; apparently the treatment protocol had changed and he didn't know it. It made me wonder what else he didn't know. I try not to think too much about all that, it's done and there's no going back. But I would always advise to go to the best hospital/doctors you can get to if you get this diagnosis. My husband was so ill at the time I was almost more worried about him than about myself, and stayed close to home.
Well, onward we go, hope next treatment goes well for you!
By the way, I do like a pretty snowfall once in a while. It seems like last few years we get ice instead of snow. Nobody likes the ice!
Talk to you soon dear Gina,
Mary
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Hello Maggie, thanks for your words, the doctor send me "Bryterol: ondansetron de 8 mg" I just take it.
Thanks again
Marias
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Hi Sylvia,
Thanks for your latest post to me. Thanks for keeping all of us here feel welcome and accepted. We all need each other's support. I appreciate you adjusting to my slow pace and keeping up with my posts. Yes, English is my second language aside from Tagalog/Filipino. I am surprised that you say i am fluent in English. You are the one who is very fluent and eloquent. I wish i have that skill. I know i always make lots of grammatical errors and many times my thoughts are not logically sequenced in my sentences. I am a little bit conscious about it and maybe you have noticed that many of my posts are edited. In Filipino, broken English is called Carabao English. Lol! I became even more conscious when i read in one of your previous posts that you are proofreading a book by you brother and that you are a perfectionist and very particular with the grammar, spelling and everything. Well, I am a Pinay and broken English or not, as long as i am able to express my thoughts, I am fine with it. Lol!
Going to my experience with Docetaxel, from Day 3 to 6, i've had fatigue with muscle and joint pains more severe than with FEC. My mouthsores are back and now I also have tonsilitis. I am more frequently going to the bathroom to pee and sometimes i find it difficult to control. My MO ordered that i take Ciprobay antibiotic and Paracetamol immediately and yesterday afternoon, she asked me to have a cbc with platelet count and urinalysis, as she suspects i may have uti. I got the lab results after 4 hours, my urinalysis seemed fine but my cbc is somewhat surprising with my wbc and neutrophils becoming normal from previous lows, while my monocyte and eosinophils abruptly plummeting way below normal, from previous highs as compared with my last cbc test. As a result, I was ordered to add zithromax antibiotic, difflucan, and another round of claritin aside from the ciprobay, essentiale liver supplement, Caltrate calcium plus vit D, iberet active and paracetamol. I stopped taking plasil and nexium as i feel like i am already a walking pharmacy! I wonder if all those drugs are needed all at the same time and i am thinking that i should pace myself especially with the antibiotics. I read that Ciprobay's efficacy is lessened by calcium, iron and zinc intake and so i am temporarily stopping my caltrate and iberet pills. I intend to finish my ciprobay and difflucan pills as they go hand in hand in fighting bacterial (for my tonsilitis) and yeast infection (mouthsores). I will delay the Zithromax and see what happens next. My MO says she's being on the safe side.
Immunotherapy is getting so much hype these days and i was tempted to try it before my chemo but when i did a little research, i found out that it is still on the research stage so i opted for chemo. Prevention is still the best and I wish that some research focus on finding safe vaccines for babies to at least prevent some cancer genes from mutating at adult ages. HPV already has a vaccine. Is this sensible?
Ok, this is all for my update.
Happy thoughts,
Gina
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Hi Mary,
Thank you for your nice post and kind words. I hope by now you have completely recovered from that bug. I once had a terrible cough that lasted for almost 2 months. I think i got it after i went to on a trip to Hongkong. At first it wasn't really that bad but i sort of neglected it thinking it was just a self-limiting viral infection but it progressed. It was made worse by my self medication, with a weak antibiotic and the wrong cough syrup that made my throat so itchy. Good thing my cousin doc was still alive during that time and prescribed the right meds. I miss her, she was so helpful with so many poor people in our community. When she died of bc, there were hundreds who condoled and attended her funeral.
My first Docetaxel/Taxotere seems to be a little worse than my FEC. I am having muscle/joint pains, mouthsores, tonsilitis and a posdible uti but everything is still manageable. i had my CBC and urinalysis yesterday. The urinalysis is fine according to my MO. No word yet from my MO regarding my CBC result but it looks like everything's ok except for my suddenly low monocyte and eosinophils count. Still waiting from my MO about this.
"Onward". I like that word. That's my mindset for my own journey. You're right, we should keep going forward, doing what we think is best for us especially in choosing the best hospitals and medical care we could find and not fuss about things that were over and done with. I still believe more in the orthodox medicine though i have my fears. I do have faith with my MO, but i make sure i check on the things she prescribe to me just to have some knowledge. I also use my common sense like just now, she just texted that my cbc and urinalysis are both fine, and i was right in holding back on an antibiotic intended for uti. There were already so many meds to take as i have mentioned in my above post to Sylvia. I really have to be careful about them as they produce their own side effects which i might regret later. I am also glad i had my hands and feet iced as i have been hearing more and more of the neuropathy that Taxol causes. Thanks to you, Sylvia, adagio and others who warned me about it. I wonder if the Polynerv 500 prescribed to me is already enough to prevent neuropathy. I read that L-Glutamine might also help. Do you have any info on this?
I like funny things before my bc and more now that i have it. My DH is fond of showing me funny stuff from the Net and i share them with this forum with the intention of reducing stress from my fellow cancer patients. It really helps me a lot to keep a positive outlook and forget all about the problems. Have you already seen my thread? It is "A Cure for Cancer, LAUGHTER". I hope you visit my thread and post some funny stuff too. Before i created that thread, i was feeling so bored and lonely but ever since i made it, somehow i get excited from searching the Net & posting jokes, animated pictures, inspirational quotes, and funny youtube videos. I made it my laughter therapy. If you feel lonely at times or have idle time, you can explore my thread or you can search the Net for more funny subjects, or maybe arts, music or hobbies and post it on my thread. It might take your mind off boredom, especially in an icy weather like where you are now.
Be Happy, God is with us
Gina
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