Calling all triple negative breast cancer patients in the UK
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Hello adagio,
Thank you for your most interesting post. I have read it carefully and want to respond when I have more time. I shall answer it during the weekend when I hope to have more free time.
Talk to you soon.
Love.
Sylvia xxxx
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Hello Mary,
I was just about to acknowledge adagio's post when I saw that you had posted.
I shall answer your post during Saturday and Sunday. I have read what you said about all these vaccines being used on babies and I just cannot believe it. It cannot be right and I fear it may be doing harm.
I am so proud of the quality of the posts that we have on the thread.
I have a strong feeling that I should steer clear of doctors and dentists. Is this too cynical?!
Talk soon.
Love.
Sylvia xxxx
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Hanieh ! So glad you are up and looking fabulous ! How do you feel after this infusion ?
Will catch up this evening on everyone’s posts. Mumma got admitted into hospital now for observation, her white blood cell count is dangerously low and she’s developed an internal infection ie fever and all. Fingers crossed all will be well ok ! ❤️ She’s in good spirits and ends everyone her love
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Hello to all,
Sorry I've been 'missing'. Took a break from the internet. My mind was racing with so many things and could not sleep. So sorry to hear of some our dear sisters reccurences. And welcome to those that have found us.
So far my stroke therapy has worked and I'm much more mobile without pain. I would walk and do errands but had excruciating pain. So far my checkups have been good. I'm on my 3rd year of being cancer free this year.
Prayers, good wishes and thoughts to all. So much to catch up on. I will comment as I read it.
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Hi, Adagio
It's so good to see you back, sorry you are having itches, worries and decisions to make.
I have not had the Shingles vaccine, my brother nags me to get it. He has had a couple of close friends that developed Shingles and it is apparently a really bad thing to have. I do know that it can last a long time. Someone else was telling me about the newer version of the vaccine, and they told me it was the one to get if you are going to get one. I do not know if I had chickenpox; I am assuming I did not because I have the round pitted scar on my upper arm which is think is from the smallpox vaccine. My parents are long gone, the house where I grew up burned down with all its' contents. I suppose I got my vaccines in school, at least, that's where I had my polio doses. But that was almost 60 years ago, I doubt my records are still in existence, so I don't even know if this scar is indeed from chickenpox vaccine or something else. I am also considering having the Shingles vaccine, mainly because I already have peripheral neuropathy. Shingles attacks one's nerves, and I can't imagine what it would do to someone who already has nerve damage!
I'm very glad the itch on your back is not shingles! If this is any help, my husband would get eczema really bad in the winter, we would hear the same thing from the doctors, "it's the dry cold air, it'll get better when the weather changes." We then went to a dermatologist and she said it was eczema, and prescribed different creams that didn't do much of anything. I finally purchased a very expensive UVB light, that took care of the eczema, he would only have to be in front of it a few times each time he broke out, and it would be cleared up, it was truly wonderful. I think a tanning bed would have had the same effect, but he had trouble getting in and out of them, so I got him this UVB light where he could position himself in front of it. You might try a tanning bed for a few very short sessions, it doesn't take much to clear it up, if it is indeed eczema.
I don't really have any advice about the Bone medication, so far my bone tests have been good. I have also heard the bone-building meds are very strong drugs with possible bad effects, but we can say the same about any drug! I guess you will have to balance it against your need for some kind of therapy. Do you have osteoporosis? Or do you have its' precursor, osteopenia?
I think you sound like me, with the January blahs. You probably need to plan another trip! My sis-in-law and I are talking about Germany in the Spring and possibly Alaska in late summer. I love having something to look forward to, it takes my mind off my physical problems.
I'm sure Sylvia will be here soon to address your questions, she is indeed a wonder and a dear friend to us all.
Talk to you soon, love
Mary
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Maryna - chicken pox and small pox are different. The chicken pox vaccine only became available in the early 2000's. Likewise the mumps vaccine I believe was in the 1980's . When we went to the travel doctor before our trip to India - she told us that smallpox has been completely eradicated as has polio - so the vaccines that we got as children are no longer necessary. However, as you found out from the video - there are many more vaccines available for infants and children today. While I am not completely against vaccinations, I am opposed to over vaccination. I believe that young children are given way too many vaccinations "just in case" - However, that is a whole other issue which I talk often to my daughter about (she just had a baby nine months ago) - she is doing selective vaccinations and I do think she is being very wise, and fortunately for her, she has a physician who is supportive.
The good thing about the new shingles vaccine is that it is a non-live vaccine which is apparently safer for those with compromised immune systems. The cost here in Canada is $280 - which is a lot of money for many seniors. There is a bit of a lobby going on with some people saying that if our government is recommending that all seniors have this vaccine, then it should be provided for free - but I honestly cannot see that happening. Perhaps it would be prudent of you to consider this vaccine in light of your neuropathy - since you already know and experience the reality of nerve pain . I think that our systems have been so assaulted already by the chemotherapy, that it is a shame to put anything more into it - definitely a big decision.
I have never heard of a UVB light - I will look into this.
We are going for a week in March to Zihuatenajo, Mexico - we went there last year and it is non-touristy and English is heard very little - but the locals are very friendly and we have a lovely bed and breakfast place we like to stay at with a wonderful view of the ocean. Next week we are going to Vancouver Island (Victoria) for a few days just to get away and a change of scenery. Then in April we are going to visit our daughter in New York. So we do have a few small trips lined up.
I have never been to Alaska - but I have heard that it is beautiful - will you take the Alaska cruise? We went to Germany in 2006 for a month and I loved it - the main cities we visited were Cologne, Leipszig, Munich and Berlin - we also did a short cruise down the Rhine as well as visiting a lot of smaller town and villages. The train system in Germany is very efficient. Germany is a fascinating country with great history and of course if you like history it is fascinating.
I do have osteoporosis, which is why I am reconsidering my action plan.
Have a good weekend and I hope that your knee is not causing you too much pain at the moment.
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Hello adagio,
It is 1 pm in the afternoon our time and I hope to have a bit of peace and quiet to concentrate on the thread. I think we all seem to need more hours to our days to get things done.
I was sorry to read that you have an itchy back problem. I am not impressed with what several doctors have told you and it cannot be true that everyone has an itchy back. There is always a reason for something. A person can get an itchy back from having dry skin, especially during winter months when central heating and a lot of hot showers can dry it out. Using a good moisturiser regularly helps with this. I use coconut cream from the Dr Organics range. I would think the little bumps that are appearing should be checked out. It could be some kind of allergy, even perhaps from soap. It could be stress. If it were me I would probably ask to see a dermatologist. Doctors who are GPs are generalists and do not always have the answers. Anything is better than worrying. I do hope you will get to the bottom of the problem.
I do remember, when we first arrived in Canada, that I was surprised at all the products for itchy and dry skin that were in the shops. I thought it was probably due to the long harsh and cold winters and the excessively heated homes and shops and all the insulation.
I do not really know what to say about the treatment for osteoporosis. When I was diagnosed with it after breast cancer treatment, I listened to what the oncologist said about taking bisphosphonates and did not even consider them. I thought and still think that they do more harm than good. I made up my own mind and bought Solgar Bone Support supplements, Solgar vitamin D3 and later added Life Extension Strontium Citrate. I refused the cheap calcium carbonate offered on prescription on the NHS, along with strontium ranelate. I have kept with my own treatment ever since I was diagnosed with osteoporosis after cancer treatment. I do not get DEXA scans as they seem to be rationed on the NHS. I look and feel alright, so I go along with that.
I try to get as much calcium from my diet as I can and I eat nuts, like almonds, almost every day, and I grind up a mixture of pumpkin seeds, sunflower seeds, whole sesame seeds, not the ones that have been stripped, and linseeds, most days with plain soy yoghurt, some of it enriched with calcium. Occasionally I have wild canned salmon with bones, and canned sardines. I also have chick peas. As for vegetables, I eat bok choi, kale and spinach.
I think we can only say what we each do to help ourselves and leave others to make up their own mind.
Having said this, I would not even contemplate taking a drug like Prolia but that is my own personal decision. I know that it is a monoclonal antibody and is used to treat metastatic cancer as well as osteoporosis. The generic name is denosumab. I am posting a link so that you can read about it and see the long list of side effects.
https://en.wikipedia.org/wiki/Denosumab
I am posting the long list of side effects on this link. I, personally, would not touch it with a barge pole.
"The most common side effects are joint and muscle pain in the arms or legs.[3] There is an increased risk of infections such as cellulitis, hypocalcemia (low blood calcium), hypersensitivity allergy reactions, and osteonecrosis of the jaw and atypical femur fractures.[3][10] Another trial showed significantly increased rates of eczema and hospitalization due to infections of the skin.[11] It has been proposed that the increase in infections under denosumab treatment might be connected to the role of RANKL in the immune system.[12] RANKL is expressed by T helper cells, and is thought to be involved in dendritic cell maturation.[13]
Discontinuation of denosumab is associated with a rebound increase in bone turnover. In rare cases this has led to severe hypercalcemia, especially in children.[14] Vertebral compression fractures have also occurred in some people after discontinuing treatment.[14]"
I was interested in what you said about the shingles vaccine. This vaccine has been pushed a lot here but it has been rationed because of the expense to the NHS. People have been given the vaccine over quite a few years, depending on their age. The age qualifications were somewhat difficult to work out. I always seemed to fit in the middle bit where you did not qualify because everything changed on September 1st. Raymond had it and seems to be OK, that was two years ago. I was thinking of having it, but to have it privately was very expensive. I am glad I did not have it because I do not like the idea of a live virus and after that flu injection last November, I shall never have any kind of vaccine again. Moreover, I think that if we have had cancer, then we must have depressed immune systems and we should not have the vaccine, be it dead or alive, but I do not know if people were being asked about their immune system and if they were asked, they would probably not understand what it meant.
Do you agree that we must have depressed immune systems? I remember reading that with damaged lymph systems, we have depressed immune systems. There are lots of people who have damaged lymph systems and are probably not aware of it.
I do not think I ever had chicken pox, but an adult can never really be sure what they had as children. I do not think when I was growing up that we had much in the way of vaccines, but all I remember is having something for polio. All I remember having as a child is measles and whooping cough. We did not seem to get ill like children do today, but we were not as sanitised!
I hope Raymond and I never get shingles. An elderly friend of ours had it a few years ago and has real nerve pain even now.
I would be very interested in what you have to say about these things, as you are a nurse. I wonder whether Kath from Australia, also a nurse, will pop in with some views.
That is about all for now. As for dental work, that is a whole new chapter. There was mention of plaque which is now being called biofilm. I think there is only one kind and reading the book made me wonder whether plaque is protective and should be left as it is.
More later.
Love.
Sylvia xxxx
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Hi, Adagio
Thanks for straightening me out, I did have chicken pox and smallpox a bit mixed up. What I was trying to say was I don't know whether or not I had chickenpox as a child, which I think is what makes one vulnerable to shingles? My scar is from smallpox vaccine, which you say we wouldn't need anymore.
Yes, I am seriously considering getting the new Shingles vaccine. My brother got the older vaccine, with no ill effects that he knows of.
The video-conference is ongoing every night for a week. I did not see all of it last night, but saw some of it; last night's episode is still on today and will be on till tonight. One thing I saw concerned polio myelitis, and its' supposed eradication. The speakers on the show agree that it is not eradicated, but it is quite rare for it to cause paralysis. There are a half-dozen other illnesses that can cause paralysis and look like what we believe polio is. One speaker discussed an article containing information and a graph that linked the widespread use of DDT with the incidence of polio between 1945 and 1953. The lines followed perfectly with the incidence of polio lagging 6 months after DDT use. As the use of DDT dropped and was eventually banned, the incidence of polio meyelitis did as well.
Several of the speakers discussed the very definitions of polio, the numbers changed drastically just with changing the name and diagnosis of an illness to aseptic meningitis, and Coxsakie syndrome, which present in much the same way, but may not cause paralysis.
I will not go on with this any farther today, you are a nurse, and have your own training and there is much in this program. I do want to add that I believe the medical community proceeded with good intentions, using data available at the time. I am very glad your daughter is being prudent with her child's vaccines, can you tell me why a newborn would need Hep B vaccine?
Good for you that you have trips planned, what fun! If your itchy places are indeed eczema, the sunlight on your skin in Mexico should clear it up. The UVB light I have is considered medical equipment, but it is quite large and we have to be careful of it, it can damage eyes without proper goggles and burn skin quickly. It is meant to be used for brief periods only therapeutically. My husband would not be bothered by the skin problem in summer, it was a winter occurrence, and very miserable. Insurance would not pay for the UVB light, but only for the ineffective creams.
The trip to Alaska that we are looking at is about 2 weeks, it is one week aboard a ship, then we disembark and take a train to Denali Wilderness and stay in a lodge and go out into the wilderness, we also go on a paddle-wheeler for a day trip so will be using almost every form of transport imaginable in that time. We haven't committed yet, but thinking hard!
The current trip to Germany we are looking at includes a Rhine River cruise, some time in the Netherlands and 4 days in Switzerland. We do want to go on one of the high-speed trains we have heard about, there is one to Paris, but we don't plan on going to Paris this trip. Fun to think about it all!
Talk again soon, love, Mary
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HI, Sylvia
I wanted to respond to some more things in your post of January 25.
I have ordered the Dental Diet book. I am looking forward to it.
I did comment a bit above to Adagio on last night's video-conference on Vaccines. It concerned "What's in a Vaccine, are Vaccines Effective?....and what about Polio?" I didn't see it all, it is still on today however, until the new one tonight. Perhaps you should sign up for the series, it is free, and there is so much varied information from assorted speakers, doctors, etc. that it is hard to recap it all. Last night's program was an hour and a half, the first night was almost two hours. Tomorrow's episode would be very interesting for you, I would think, it concerns the Influenza vaccine. All they ask for is first name and email address to sign up, at least that's all that I had to do, and then you have access to the free viewing for 24 hours.
I stumbled upon a movie on TV a couple of weeks ago called "The Hours". It was about Virginia Woolf, she was played by Nicole Kidman, who was almost unrecognizable with a prosthetic nose added to her face, and a very dour look throughout the movie. I would have to watch it again, and see the whole thing to make more of a comment on it, it seemed to be mostly about her book "Mrs Dalloway", and her depressions and suicide attempts. There was a storyline in the movie running concurrently, with Meryl Streep playing a wealthy widow in current times who had been somewhat influenced by her writings, and was called "Mrs Dalloway" by her dying, suicidal friend. And there was yet again another storyline, with a young pregnant mother who was considering suicide. I would have to watch it again and see it all to really get the gist of it, but it seemed quite depressing. I did read "Mrs Dalloway" years ago, but that's all of Woolf's books I have read, I will try to dig into more of them.
You are right there are so many prescriptions given out these days, it's hard to believe any doc or pharmacist can keep up with all the interactions. And there are people who go to more than one doc and more than one pharmacy!
I must go for now, talk again soon, love,
Mary
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Sylvia and anyone else interested,
I just wanted to re-state that the show on each day of the 7-day program on vaccines is aired for 24 hours, so it would be convenient viewing for anywhere in the world.
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Hello Sarah,
I just noticed your post to Hanieh and wanted to say that I was very sorry to read that your mother was admitted to hospital for observation. I was sorry to read that her white blood cell count is dangerously low and that she has an internal infection.
I was concerned about the low white blood cell count because I thought it was standard procedure now to have Neupogen injections after each chemotherapy infusion to avoid this. I am not sure how this is done because when I had my chemotherapy it was not offered to me but I did not have any problems with low white blood cell counts, though I do know from the posts that other women did.
Neupogen is the brand name for filgrastim 251, a blood growth stimulant. There is also the brand name Neulasta that is for pegfilgrastim, a blood growth stimulant. You might like to ask about them.
I do hope she will make a good recovery and will soon be back home. I am glad she is in good spirits.
Love.
Sylvia xxxx
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Hello Val,
It was nice to see you back on the thread. I think it is a good idea to take a break from the internet from time to time. There is too much information for the brain to absorb and we can get it all mixed up. I try just to remember the salient points and keep everything simple. It is not good when our brain is racing at night and we cannot sleep. Good sleep is very important and very therapeutic.
I was glad to know that your stroke therapy has worked, that you are making progress and having good check ups.
Congratulations on being in your third year of being cancer free.
I hope you manage to catch up on all the posts and I am sure we all look forward to your comments.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for that last post and for the information about the influenza vaccine. I shall sign up for it tomorrow and try to watch it on Monday, if I can. I am at the hospital in Exeter on Monday about the mole. My appointment is at 11:45 am our time.
I was glad to know that you are going to buy the book. We can comment about it as you read the chapters and I can look back at those I have read.
As I have said, I do wonder about all these vaccines. I do not think I have had many in the past. I do not remember them during my childhood. I know I had a polio vaccine many years ago in Exmouth, as well as a tetanus booster. Most of my life I have never been ill and taken medication and that is why I found it so difficult to give my consent for my breast cancer treatment.
I do know that Virginia Woolf did have a lot of mental problems in her life and that she committed suicide by walking into the sea I think. She started off writing quite traditional novels and then later more in the style of the nouveau roman (new novel). I was interested in what you had to say about the film. I did enjoy the book Mrs Dalloway and also films I have seen on television about it. I read all those books too many years ago and I find that now I do not read fiction so much. I am too busy reading non fiction and magazines about politics and current affairs.
I do wonder where we are going with vaccines and medication. I think in the UK the idea is to get everyone medicalised. That is good for the drug companies but not good for the NHS.
I have just read part 2 and chapter 7 of The Dental Diet. It is entitled Why The Food On Your Plate Is Making You Sick.
I was already convinced that the cause of a lot of our illnesses is the modern diet, which has taken all the goodness out of our food. I am now even more convinced. I shall write more about this later.
Love.
Sylvia xxxx
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Hello Mary, again,
I just wanted to say thank you for that very detailed account of what is going on with vaccines. I find it all truly shocking. It seems that big business, especially big pharma, has too much power.
Thank you for the link, which I shall try to have a look at sometime soon.
I agree with you and adagio that there is only so much information our brains can take. I think we all have curious minds on this thread and are not afraid to ask questions.
I do hope you have a good Sunday. Tomorrow, if it is not raining, I hope to get out for a bit of fresh air. I think it works wonders.
I do hope we shall hear from Marias soon, and also from Kath in Australia, Lou in Singapore and Kath28a in London UK.
I do wonder what has happened to Rhonda and 4everStrong.
That is all for now.
Love.
Sylvia xxxx
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HI, Sarah
I did want to let you know I was admitted to the hospital after my first infusion. My white blood cells were also very low, supposed to be in the 6+ range and were .03. I spiked a fever and was so weak I couldn't stand. They hooked me up to antibiotics and I slept for a day, on the second day they began giving me the drugs Sylvia spoke of, Neupogen or Neulasta, not sure which one. That boosted my white cell count and I felt much better after a bad bout of diarrhea. I was in the hospital for 4 nights and went home the 5th day. It's unfortunate but it does happen. My doctor did reduce my chemo dose after that, so I got through the rest of them okay. I did receve the Neupogen/Neulasta after every infusion after that.
I hope your mom recovers quickly and can get back home, it's never good to be in the hospital and right now there is so much influenza, it's really bad. I was put in isolation when the neutropenia happened to me, and she probably will be put there too. I was 61 years old at the time.
Wishing you both the very best! Love, Mary
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Sylvia,
I too wonder if our immune systems are still down. I feel so much stronger than I did back in the chemo days and a couple of years after that so it's hard to believe that I could still have a depressed immune system. However, a friend called the other day to see if I was okay, she said that there was so much flu around that she was making sure I was okay since I my immune system was probably still down. I let the comment go by, but it made me wonder, and then I saw your post to Adagio where you were wondering the same thing.
I do know that the white blood cells are the gatekeepers of our immune systems, and when mine were so very low after my first infusion I felt absolutely like a weak, newborn kitten. I was kept in isolation at the hospital because anything can get through the gate when the keepers are gone! When the white blood cells built back up, I felt much stronger. I know other things can depress one's immune function, but you take such good care of yourself I would bet your immune system is quite strong.
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hi Mary
I hear where u are coming from but I’ve actually seen the other side of that debate! I have vivid recollection of counseling a young mum who had just lost her 8 week old baby to Pertussis. Her other children had been cough for weeks and transferred the infection to the baby who was too young to be immunised. We now immunise moms in their last trimester and have decreased the incidence of pertussis dramatically.
Wakefield study on the link between autism and mmr has also completely been disproven. His study was very flawed and looked at a small number of children only.
I think that the key to a good immunisation program is informed consent for the parents. I currently tutor new immunisers through the Australian college of nursing and the key note to the program is to ensure that all the pros and cons are explained to the parent and the decision is then left to them. No parent is forced to immunisebtheir child against their will. I understand that we immunise for so many diseases now however many parents have never seen these diseases which I believe is due to good sound evidence based immunisation programs.
Any adverse reaction is reported to state health authorities in Australia and followed up at 7 21 60 and 90!days by public health units to ensure strong evidence base programs. I understand that many parents are very frightened as their new little bundles are so tiny and precious so i always ensure that I listen to and address all concerns before immunisation.
Cheers
Kat
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HI, Kath
Thanks for your input, you are also a nurse as is Adagio and have seen much more of all this than I, I am just someone who is interested in things medical.
The program on vaccines I saw last night did talk about MMR and DTP, which is now DTAP or TDAP. These are the vaccines against Measles, Mumps, Rubella and Diptheria, Tetanus and Pertussis. The formula for the DTP was changed in 2005 from whole-cell to an acellular type of the pertussis pathogen, it was suspected that the whole-cell was causing problems because of occasional serious side-effects. It was explained that pertussis (whooping cough) is very serious for newborns, because their windpipes are not developed or large enough to handle this condition. Also they cannot cough when so young. Thus the vaccine is given to pregnant women so the newborns are protected from it for their first months when it's dangerous for them.
I do want to say here that the people putting on the show, the doctors interviewed, the medical experts and journalists who appear on the program do not say that all vaccines are bad; but they all do question the wisdom of giving so many injections all at once. They also question the safety of the ingredients of many of these vaccines. Almost all of these people are parents, they have had to deal with the vaccine question too. The ones who talked about their decision did get their children vaccinated, but on the schedule they wanted and the vaccines they wanted, if possible. Rubella, for instance, is a sickness that is only very serious for pregnant women, so the wisdom of vaccinating everyone is questioned. This is where informed consent comes in, I guess, I think it's very good that you are making sure people know what they are getting with the tutoring you are doing. Some of the people on the program had children who had been harmed, some permanently, by vaccine, thus they have become active in trying to inform others of the pros and cons.
Something else I had never heard of that was talked about is "virus shedding". This is where a live virus is used in a vaccine, and the child/person given the vaccine can actually shed the virus and be contagious to others for over a month.
I asked my niece, who is also an RN, why newborns are given the Hep B vaccine anywhere from 2 to 12 hours after birth? She did not know, but looked it up, and said it was because it was suspected that some mothers had Hep B and didn't know it, thus passing it on to the baby during birth process. I would think a blood test could tell the mother whether or not she had Hep B, my guess is that many mothers don't even know that the hospitals are routinely injecting the babies shortly after birth.
Kath, can you comment on the new Shingles vaccine, I think it's called Shingrix? Adagio is considering it, and I have heard about it too, and have been thinking about getting it since I already have widespread neuropathy.
Thanks! I hope your aches and crawlies are not bothering you too badly, talk to you again soon
Mary
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hi Mary
Vaccine shedding can occur with live vaccines but is very rare. The only live vaccines we deal with are the mmr vaccine the varicella vaccine and bcg used fir vaccination against tb. Vaccine shedding is more comm in wild live vaccines such as the old Salk or oral polio vaccine. That is why Australia has intramuscular polio vaccine in the combination DTPa which is a very good safe vaccine. My children were all vaccinated with the old whole cell vaccine where redness at the site and febrile convulsions could occur but that vaccine is now no longer available. MMR vaccine is also the only vaccine available to cover for measles mumps and rubella in Australia. Monovalent Rubella is not available for many reasons
And the vaccine was not great. Parents also think that Rubella is the only life threatening disease but measles and mumps can also cause life threatening encephalitis in young children if they encounter the disease and so the three in one vaccine was thought to be a better option. Wakefield’s study has been completely debunked as he looked at 12 children all known to him who were friends of his children. We are also now seeing an increase in measles presentation in people who are in the 20 to 40 age group who have not been immunised for these three diseases.
Hep b is given to neonates at birth because it has been shown to give a better seroconversion and last much longer if given early. All babies born to antigen positrve mothers file hep b are give hep b immunoglobulin and a course of hep b because the risks of them developing hep b are massive. Mums in Australia are given info at the maternity unit before the vaccin s are given. They still have the option to refuse as it is a legal requirebtvto give informed consent in Australia
Zoster vaccine for shingles has just been released freely in Australian a for people in the 70 plus age group. Once a person has had varicella the disease lays dormant in their body until the he person becomes immunosuppressive and they can develop Zoster or shingles which can be quite nasty. We have seen quite a bit of varicella about so the risks of people developing shingles is quite high. I don’t knew w a huge amount about the vaccine as yet but I will do some digging and upload what I find
My aches and pains and crawlers still drive me batty and sometimes terrify me by I’m try to be logical and not play head games with myself ha ha. So hard tho! Had a tooth pulled today and my jaw very sore. Hope everyone is well
Cheers
Kath
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Happy Sunday Everyone,
Sylvia, We'll be thinking of you at your appointment tomorrow, and wishing you the best possible news. I think that this waiting in suspense for us is one of the worst parts of the cancer treatment experience. I know that your strength is equal to whatever your doctors tell you.
In our discussion about happiness, what you wrote about not letting unhappiness possess us reminded me of the word, Mono no aware (物の哀れ). This is from Wikipedia: 'literally 'the pathos of things,' and also translated as "an empathy toward things", or "a sensitivity to ephemera", is a Japanese term for the awareness of impermanence (無常 mujō), or transience of things, and both a transient gentle sadness (or wistfulness) at their passing as well as a longer, deeper gentle sadness about this state being the reality of life." That sounds depressing by definition, but Wikipedia also goes on to explain what I like about the expression, which is that this helps "heighten (our) appreciation of beauty."
I thought that was a lovely picture of Virginia Woolf that you posted.
Hanieh, You have a lot to balance physically and emotionally right now, but when we talk about happiness and loneliness, I know that you have very strong family bonds. And I know those bonds will help carry you through this.
Sarah, I'm so sorry to hear about your Mum being in the hospital. I hope you see some improvement soon. I didn't have EC, but I had A/C, (which includes Cytoxan). In some ways, the Taxol was easier for me, though it did knock me down in terms of the cumulative effect. I had Taxol weekly.
Today I'm immersed in food prep for the day and for the week. I'm also trying to keep my Fitbit steps up, and am participating with an online group for step motivation. It's 85 degrees Celsius and windy in California.
It's very comforting to have two nurses among us, and I'm always grateful for our community here.
Love,
Pam
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Sylvia,
I was just looking at pictures of Paris, and the flooded Seine River. I don't know if this is record flooding, but it looks like a lot of things that are usually dry are a large part underwater!
I want to chime in with Pam and wish you well Monday as you go to your appointment. I know Raymond will be with you, and we will all be with you too.
Talk to you soon, love, Mary
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Hi, Pam
Sounds like you are having a busy Sunday, and getting ready for the coming work week.
A while ago I talked about wanting to come to LA because I had never been to that city, except the airport. And I would like go to the bookstore that is famous. It doesn't look like it's going to happen anytime soon with my sister-in-law, so I will have to think about it some more. There are a couple of other places I would like to drive to on my own when the weather straightens out a bit; to Texas to see my brother and family, and to Oklahoma to see some long-time friends I haven't seen in ages. My sis-in-law and I are planning some grander trips as well, but I am hoping to get the others in. I really like having get-aways to look forward to. You haven't mentioned any excursions, so I was wondering if you and your husband had ventured very far since the Holidays.
Today was unseasonably warm here, it reached a high of 60F. Tonight a little snow and freezing rain, and a high of 34F tomorrow! Not like your California weather, and not good weather to go for a long drive. So until that changes I am content to be here in a warm house after spending much of the day outside.
Have a good week! Always good to see you, love
Mary
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Hey Kath
Thanks for your detailed answer above, it's good to have input from a Nurse. It sounds like you are doing a wonderful thing by tutoring the parents who come to you, who I'm sure are understandably worried about their decision. .
I did understand from the program that Rubella, Mumps and Measles are now given together as one injection, and individual shots of just one of the medications are not available.
Glad to hear the virus shedding is not common, and probably a result of the live-virus vaccine, such as the old Salk polio vaccine.
I did not know Hep B was such a problem, I have some knowledge about Hep C but know that is difficult to contract. I will have to check when Hep B became an issue. As I said, I'm just curious.
I did look up the new vaccine, called Shingrix, which has recently been released. It has 90+% success rate in the over-50 population. It is given in 2 shots for total dose, split during 2-6 months. Supposedly in not too many years, 1 in 3 people will develop Shingles. That is a lot of people.
A strong immune system sounds like the best defense of all, for everything!
I noticed you are a year and a half out from diagnosis, you are doing great! I think these pains and tingles we have now are part of our new bodies, sad to say. I am going back to the knee doc tomorrow, he gave me a shot in knee 6 weeks ago and wants a report. My report is "It didn't work!"
Have a great week, love, Mary
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hi Mary
Thanks I still live in fear everyday and the dark days are the worst unfortunately. Try very hard to think of other things and hopefully re commencing my masters will help. Hepatitis b is a problem in Australia particularly for our indigenous population and good cover against the disease is great for sport etc.
Hope u get some relief with that knee soon and maybe a scope and clean our will do the trick. It’s all done laparoscopically do very small procedure. Have a chat to ur dr about the pros and cons next time u see them
Cheers
Kat
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Hi Sylvia, Mary, Sara, Pam and all
Sylvia, I'm waiting desperately for your pathology report. I hope only good come out of it.
Mary, that's interesting to hear you have a warm weather there.Here, we are having the coldest days of the year. People are extremely happy for the heavy snow we are having these days as we usually don't have too much snow here.
Sara, I hope your mother is getting better now. I'm sorry she had to go to the hospital because of low white cells. I'm supposed to have some injections for ten days after chemo. But as the side effects are too troublesome, I usually have no more than three injections. But thankfully my blood test shows acceptable white blood cells. Now 5 days after my 3rd chemo, I'm not back to my normal but I feel far better than previous days. I really long for the end of my treatment.
Pam, my daily routine is first to try to find the things which have made me happy and be thankful for them. Some days it's harder but I have no choice but to keep my spirits up.
I have a question to ask all here. There are contradictory ideas about using antioxidants during chem. Some say things like bee propolis and royal jelly can help to make cancer cells more responsive to chemo and some say they make them chemoresistance. Have you ever asked your doctors about it. My doctor only suggested tumeric and lemon. I also have bought propolis capsules and royal jelly as I read about their strong anticancer effects. My doctor is not sure about their safety. Do you have any idea?
Love
Hanieh
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Hi, Hanieh
I would like to answer your question about taking anti-oxidants during chemotherapy, but I am not sure I can. When I asked my oncologist about this question, he recommended taking no vitamins or supplements during chemo. He said they would protect the cancer cells, instead of allowing the chemo to kill the cells. He is the same doctor who recommended I drink the sugary, creamy drinks I was given by the case by his clinic, that were supposed to provide protein to my body. I could not drink them, and I found better alternatives, and I am not too sure about his nutritional advice.
But I still don't know the answer to your question, I do think that we should try to stay as strong and healthy as possible. If you can eat a good and varied diet, that would be the best thing, I would think. I know that is a challenge since sometimes our appetites are not good during chemo, and food doesn't taste well. Do try though. I did not eat enough, and I lost too much weight and muscle during chemo.
You are right, there are conflicting opinions on this matter of whether or not to take in anti-oxidants during cancer treatment. Perhaps someone here will come on and enlighten us. I am glad your doctor is recommending turmeric and lemon.
I am glad you are enjoying the snow, it must make your city air fresher to have that. We did not get any snow last night but the temperature dropped about 35 degrees, it's winter again!
I am also anxious to hear from Sylvia about her appointment, and I'm sure she will have some advice for you.
Take care, talk soon, love
Mary
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Hello Mary
Thank you so much for your answer. In fact, I do not like to take any vitamins supplements during chemo, but bee propolis and royal jelly can be of great help. Also, Chris Woollams suggests taking them.
I'm too worried about Sylvia. I think this is my 3 time coming here today to hear from Sylvia. I hope she comes soon with some good news.
Love
Hanieh
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Hi, I'm Maddy and I have joined the triple negative club.
Diagnosed last February, last 12 months had many surgeries, some linked directly to my cancer others indirectly to complications during and after surgery. No Chemo required or Radiotherapy, albeit my choice, I thought I'd cut to the chase having double mastectomy with reconstruction. Now recovering on my third week!
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Hello Mary, adagio, Pam, Hanieh, Kath and Sarah,
I have been reading through all of your posts and, as usual, they are all very interesting.
Thank you all for your concern and kind words with reference to the result of the biopsy. I got the result this morning and all seems to be well, but I have to return for another appointment to go deeper into the area where I had the mole. They want to make sure that everything has been removed and then that should be an end to it.
I do get fed up with the slowness and bureaucracy of the NHS and the whole system does need a clean up. I shall keep you posted.
I am now going to look back at your individual posts and make any comments that I have.
Thinking of you all.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your kind words and your information about that Japanese term. I do believe that we have to live in the moment and not be nostalgic about the past or count on the future. Live each day to the full and do not take life for granted. I especially believe that living an uncluttered life is healthy and therapeutic. You can not take it with you when you go!
I very much like the picture of Virginia Woolf, so thank you for your kind words about it.
It has been quite a hectic day today. I do not like hospitals and I could not wait to leave. I do not like the fact that patients are now being seen by specialist nurses and not doctors. I saw no sign of any doctors or consultants. There is a consultant overseeing things, but you do not see them. I do not like the fact that with the NHS you never seem to see the same person twice.
I am always full of questions. I asked whether there was any connection between the breast cancer I had and the treatment, and the appearance of the mole. I was told there was not.
I do hope you have a good week at work and I am going to try to post some more bits from my little book Happy. I think we all need it! I know I am fed up with the dull weather here, but I know it could be worse.
Love.
Sylvia xxxx
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