Calling all triple negative breast cancer patients in the UK
Comments
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Hello Kath,
Thank you for your post and the beautiful photograph.
I saw that you mentioned a thyroid medication. It sounds as though it is for an under-active thyroid. How long have you had it?
Please stay away from Google with reference to breast cancer. It serves no purpose. You have done your treatment and you must keep looking forward. If anything is bothering you, you need to talk with your medical team.
How is your work going? how are your grandchildren?
Keep in touch and stop worrying.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for keeping us informed about your sister. We shall be thinking of her tomorrow and hoping all goes well. She was given good advice about not going to her show. Her immune system will be weak and I was certainly told to avoid all crowded places, public transport and anyone unwell during my chemotherapy treatment. She needs to keep well hydrated, take the anti-nausea tablets give for the first few days, rest as needed and be positive.
Her hair will soon grow back.
How are you keeping?
Love
Sylvia xxxx
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HI, Sylvia
I think I told you I bought a subscription to WDDTY, it started with the February issue on Dementia, and the one with BC on the cover is the March issue.
I thought the claim that mushrooms, broccoli and other members of cabbage family are the answer to solving cancer was just too simplistic, and I agree with you, there are probably many factors involved. We probably all know many people who eat pretty bad diets, and never develop cancer; although bad food habits do catch up with most people sooner or later, depending on other factors too; such as smoking, drinking to excess, genetic makeup and so on. The nice thing about the article is they really get into the details of why the mushrooms, broccoli etc. are beneficial.
I did think Woollams" posts did each have at least one thing of interest in it, I don't have time right now to get into detail. I will have to get back to it.
I have not seen Keep It Country, but will keep my eyes open for it. I like those years of music too.
I hope you are feeling quite recovered, and enjoying the better weather.
I will talk to you later, Love
Mary
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Adagio, what a sad experience you have had with your husband at sea, I hope he recovers soon and gives him many new opportunities to go on vacation and enjoy life a lot.
I hope you will recover completely soon and that at home and among your loved ones you will feel safe and comfortable.Abrazos
Marias
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Hello Sylvie and all of you.
I trust every day we improve a little more, tolerate more the treatments and the consequences of those treatments.
Sylvia, the situation in Colombia, is totally ignorant of what a war is, for many years we were at war with the guerrillas of the FARC, ELN, EPL but these wars occur in towns and small cities, very rarely in the biggest cities.
Right now there are highly RCN channels, NTN24, which show all the time the discontent of Venezuelans, the arrival of planes with humanitarian aid to the border venezuela colombia, venezuela brazil, and how they are looking for people in need in venezuela they are getting closer by them. while in my country, Colombia, the people ask that the gringos arrive and put venezuela to work. They do not see that if we go to war, as before, their children are the ones going to the army, the rich never go or the children of the rich go to war, they only sell weapons, ammunition, parapets, food army.
I live near an army battalion, the air base of the armed forces, it is inside the city, so I imagine the chaos in which we will find ourselves, if Venezuela attacks us. But people still think that the war will be fought far from us, over there in the periphery and we will see it on TV, we will not feel it like the war against the guerrilla.
The other TV news channels try to show what happens in Colombia, which is highly critical, in health, education, infrastructure and what we have as we are, the high levels of corruption.
I give you an example, we are facing a great scandal of corruption by the Odebrecht company, who to win infrastructure contracts, paid bribes in Colombia and many other countries in Latin America. here the attorney general worked with them, and they have not deposed him, they have asked for his head, but only a few do, every day, from the television channels, they show us what we should be outraged ... we are not outraged for people dying of hunger, or for the lack of resources for health, now the country, totally outraged that a policeman, he gave a fine to a person who bought a pie to a street vendor because sales are forbidden traveling.But in Colombia, the informal economy is 47 to 48% according to the DANE, official institution.
This scandal, hidden all Odebrecht, health, education, people without anything to eat ... and make this joke, yellow news, memes, etc, and do not go to the base, because there is informal economy.
My country is a joke, we have a president of lies, who when he meets for the first time on an official visit to the King of Spain, says "President Uribe sends you greetings", or last week when the forum gives him the word to former president Uribe, he says, now the president is going to speak to them.
I try that this does not touch me much, or think about this ...
now tomorrow I have the appointment with the endocrine, so that you give me orders for the biopsy of the ganglion or orders for the surgery of the ganglion, which is better? a biopsy, I'm scared, by a popular belief, that the cancer is irrigated if they fight it, or it's better to remove everything and send everything to pathology ... I do not know but I do not feel well ..Thyroglobulin antibodies are in 36 when by my condition they should be 0. In December they were 13. In the endoscopy and colonoscopy exams, I showed that I have chronic gastritis and some small lesions, which have already had a biopsy. I'm pretty nervous lately.
Abrazos
Marias
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Kathe, what a beautiful picture of the prairie in Australia and of the moon lighting the way.
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Hi Mary, I trust you every day better.
Receive my best wishes for you and your family.
Thinking about what the magazines tell us and the things about what we should eat or not, or about feeling guilty about certain habits, I sometimes ask myself, for some of the habits I had: eating chicken a lot, everything that smokes, smokes 13 years, the Imedeen tablets, which I consumed for more than 10 years.
Vegetables have always been part of my diet, but not so much the broccoli ...
yesterday a friend who has leukemia, she is 65 years old, she stopped chemotherapy after being hospitalized for more than 6 months, and she is cultivating her health, with radionics and frequencies and is taking Immunocal. and says that it is the best thing, to me it seems very expensive and you can access it from a pyramid economy.
Well, I leave you with this concern.abrazos
Marias
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My sister's first Chemo yesterday went well. Second day, no side effects, though they told her to expect them tomorrow or soon after. She's in good spirits.
I had my oncologist appointment yesterday, over two hours, and had to cut it off because I had to get my grandson.
I will get the results of my blood test Monday. I had my telegenetics (sp?) conference during that time. But because I had to leave early, I won't have my blood test for a month. They want to test my BRCA genes.
What do you think of telegenetic testing?
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Hello Marias,
Thank you for your post. I was very interested in the information that you gave about Colombia.
I do hope that your country does not get entangled with what is happening in Venezuela. I do hope the Americans do not invade Venezuela. Donald Trump promised to concentrate on his own country and keep out of other people's countries. Our news is selective as well. I thought Chavez was doing a good job for the people in Venezuela and I do not understand what has happened since his death. It seems to me that the new president was elected but the American administration do not like him and so once again they are after regime change. This country follows the Americans. I thought we had learned our lesson after the illegal invasion of Iraq, the dodgy dossier and all that has happened since that war. We never learn!
I do agree that it is the ordinary people that suffer in war, the poor people, the poor children. Nothing ever changes.
There is corruption everywhere in the corridors of power. Governments should be elected by the people for the people and it is the duty of governments to look after their citizens. In this country we are told that we are the fourth richest in the world and yet we have people living on the streets and more and more people, especially children, living in poverty. The gap between rich and poor gets bigger and bigger.
I found everything that you said in your post very interesting. I do not believe things will change in any of the countries of the world. The rich and powerful will always beat the stick at the poor and downtrodden.
What happened when you had your appointment with your endocrinologist? I can see that you had a difficult decision to make. You had to decide whether to have a biopsy for the lump or to have the lump removed through surgery. Only you can make that decision. Let us know what the decision was. Perhaps it would be easier to have the surgery, get everything removed and then see what the pathology report is.
I am not surprised that you are not feeling well. It would be good if you could put all this behind you, the breast cancer, the thyroid problems and get on with your life.
Do you know why the thyroglobulin antibodies are 36 when your condition says they should be zero. They are increasing as they were 13 in December. Your doctor should be able to explain to you why there has been this increase.
I do hope that everything will get better for you and that you will be able to get on with your life.
You have suffered so much since November 2016.
I was looking at my encyclopedia which unfortunately is dated 2008 and they have stopped publishing this encyclopedia. I would love an updated one. I prefer it to the internet. I was studying the map of Colombia to refresh my memory and saw that you are surrounded by five other countries, including Venezuela and Brazil, so I do hope there is no invasion of Venezuela by the Americans. I see that aid is building up on both the borders of Colombia and Brazil. Is it a Trojan Horse? Where you are looks like a lovely part of Colombia.
That is all for today. I shall put all this in Spanish to help you and reading Spanish helps me.
Abrazos.
Sylvia xxxx
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Hola marias
Gracias por tu publicación. Me interesó mucho la información que dieron sobre Colombia.
Espero que su país no se enrede con lo que está sucediendo en Venezuela. Espero que los norteamericanos no invadan Venezuela. Donald Trump prometió concentrarse en su propio país y mantenerse alejado de los países de otras personas. Nuestras noticias también son selectivas. Pensé que Chávez estaba haciendo un buen trabajo para la gente en Venezuela y no entiendo lo que ha sucedido desde su muerte. Me parece que el nuevo presidente fue elegido, pero a la administración estadounidense no le gusta y, una vez más, están tras el cambio de régimen. Este país sigue a los americanos. Pensé que habíamos aprendido nuestra lección después de la invasión ilegal de Irak, el expediente poco fiable y todo lo que ha sucedido desde esa guerra. ¡Nunca aprendemos!
Estoy de acuerdo en que son las personas comunes las que sufren en la guerra, los pobres, los niños pobres. Nada cambia.
Hay corrupción por todas partes en los pasillos del poder. Los gobiernos deben ser elegidos por el pueblo para el pueblo y es deber de los gobiernos cuidar de sus ciudadanos. En este país se nos dice que somos los cuartos más ricos del mundo y, sin embargo, tenemos personas que viven en las calles y más y más personas, especialmente niños, que viven en la pobreza. La brecha entre ricos y pobres se hace más y más grande.
Encontré todo lo que dijiste en tu publicación muy interesante. No creo que las cosas cambien en ninguno de los países del mundo. Los ricos y poderosos siempre vencerán a los pobres y oprimidos.
¿Qué pasó cuando tuvo su cita con su endocrinólogo? Puedo ver que tuviste que tomar una decisión difícil. Tuvo que decidir si desea hacerse una biopsia para el bulto o para que se extraiga el bulto mediante una cirugía. Solo tú puedes tomar esa decisión. Háganos saber cuál fue la decisión. Tal vez sería más fácil hacerse la cirugía, retirar todo y luego ver qué es el informe de patología.
No me sorprende que no te sientas bien. Sería bueno si pudieras dejar todo esto atrás, el cáncer de mama, los problemas de tiroides y seguir con tu vida.
¿Sabe por qué los anticuerpos de tiroglobulina son 36 cuando su afección indica que deberían ser cero? Están aumentando como eran 13 en diciembre. Su médico debe poder explicarle por qué ha habido este aumento.
Espero que todo mejore para ti y que puedas seguir con tu vida.
Has sufrido mucho desde noviembre de 2016.
Estaba mirando mi enciclopedia, que desafortunadamente está fechada en 2008 y han dejado de publicar esta enciclopedia. Me encantaría una actualizada. Lo prefiero a internet. Estaba estudiando el mapa de Colombia para refrescar mi memoria y vi que estás rodeado de otros cinco países, incluidos Venezuela y Brasil, así que espero que no haya invasión de Venezuela por parte de los estadounidenses. Veo que la ayuda se está acumulando tanto en las fronteras de Colombia como en Brasil. ¿Es un caballo de Troya? Donde estas se ve como una parte encantadora de Colombia.
Eso es todo por hoy. Pondré todo esto en español para ayudarte y la lectura en español me ayuda.
Abrazos.
Sylvia xxxx
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Hello Mary,
Thank you for your recent post. I shall not be able to get the March edition of WDDTY until Thursday. As soon as I get it and have read through it I shall be able to make some comments.
Anything of interest that you have from Chris Woollams will be worth putting on the thread.
Raymond and I are feeling much better but it has taken four weeks to get here. We are still not back to normal.
I hope you are having a pleasant weekend. The thread has gone quiet again and I am concerned that we have not heard from Gill.
The usual chaos remains here and we are just five weeks away from Brexit. I hope it goes through, otherwise there is no democracy. After that I think we need a General Election to sort out the mess that is our present Parliament. I think it is a cheek that Theresa May has gone of to Sharm el Sheik, a luxury resort in Egypt to meet up with the 27 other members of the EU. It makes a mockery of preaching about air pollution and the carbon footprint. Nothing will be resolved.
Take care, Mary.
Love.
Sylvia xxxx
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Hi, viewfinder
I am glad your sister's first treatment went well, hopefully she will have only slight side effects. It really varies from person to person.
I have had a BRCA test, and my results were negative. I did not know what telegenetics is, but looked it up and saw that it is genetic counseling via video conference. I don't know what it entails exactly, but I do know that seems to be the emphasis now in diagnosing and treating different kinds of cancer. Right now it seems that the future is in reading one's genes and developing a treatment method that targets that exactly.
I feel as though as I have missed something. Do you have a lump somewhere? I thought I was reading about your sister's treatment, but saw something about a tumor that you have? Or perhaps I misread that. I did see that you have an oncologist appointment, I think.
Talk to you later, love
Mary
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Hello Sylvia and everyone on the thread,
I'm afraid the Taxol part of the treatment has completely knocked me sideways. Utterly exhausted, my legs are barely able to hold me up, I continued to have diarrhea at night, I'm breathless and also have bouts of vomiting. I should be having my last treatment on Thursday, but I may just call it a day. My Oncologist came to see me in hospital two weeks ago and was concerned by the change in me. I'll see what the Oncology Registrar thinks on treatment day.
I don't really want to give up at the last hurdle or to end up thinking 'what if....'
I need to go back and catch up with everyone's news. I did look at the photos and very much enjoyed them. Michael sometimes takes pictures of the latest spring flowers to appear in the garden so that I don't completely miss out on my favourite time of year.
I'm very pleased that Sylvia and Raymond are over the worst of their illness.
Mary, I hope that the snow has melted away.
My thoughts are with everyone on the thread currently undergoing treatment. Also those who, having dealt with breast cancer, now find themselves dealing with other worrying conditions. It's very difficult to stay positive at times, yet we must. Whilst on the Oncology ward recently, I was one of six patients on my bay. Five of those patients were in a much worst state than I was - by a long way. Sometimes keeping a sense of perspective can be the hardest thing.
Much love to everyone,
Gill X
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Hi Sylvia and Marias
I must say I have not been paying much attention to the happenings in South America, I have just been speed-reading trying to get the gist of what is going on. It seems to be a power struggle between the President Maduro and the want-to-be interim President Juan Guaido. Apparently the struggle is being backed by the usual superpowers, we in the USA are apparently backing Guaido, and Russia and China are backing Maduro. Although, China seems to have backed out and is not playing any longer.
I read in different accounts that Russia has mercenary soldiers in Venezuela, and another account says it is feared that the US will send Special Forces. The US is piling aid stockpiles on the borders, and Maduro is refusing to allow it in, because he feels that would be admitting that there is indeed dire need in his country, which would lead to a call for his ouster. As usual, the people that actually need the aid will not get it, and are only pawns in the struggle. Meanwhile, there was a concert on a bridge with a fence in the middle, and the 2 opposing sides had their own shows with much fanfare. The UK's Richard Branson hosted one side and is apparently backing Guaido. So there are many countries stirring the pot, and Maduro sits in the President's seat and allows his formerly wealthy country to fall into an abyss. 2 indigenous Venezuelans have been killed by Maduro's soldiers because they tried to stop the soldiers from blocking the aid trucks.
I have no idea what will happen next, and I can see why you, Marias, are worried because it is your neighbors in Venezuela who are in trouble, and these events can easily cause problems in a large area.
I do remember Chavez, and have to disagree with Sylvia on his leadership. As I remember, he took over a wealthy country and led it in a Socialist direction by redistributing land and wealth, and nationalizing businesses. The Venzuelans were very reliant on their abundant oil supplies, and when the price dropped in 2014 there was no plan to handle the disaster that followed. I am quite certain Chavez did not redistribute his own wealth, this is just my opinion.
I am very sorry Marias, for your neighbor's problems and I do hope these problems do not spill over into your country. You are right in concentrating on your own health, and trying to get your problems taken care of, we all seem powerless in these global struggles. I'm sure we all feel awful for the very real people who need help, and seem unable to get it.
I hope I have this overview correct, and I will try to follow these things more closely.
Marias, I do hope things will get settled for you, and you can enjoy your life without these issues. I am so sorry you do not yet feel well.
Talk to you soon, love
Mary
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Hi, Sylvia
I wanted to let you know that I have made an appointment to have rotator-cuff surgery. This is a source of constant pain and irritation since it has torn completely, and I have found out I also have a torn bicep muscle. This will be repaired at the same time. I have been quite nervous about the whole thing. This is the same side that my mastectomy and lymph node removal are, and I am worried about this surgery perhaps bringing on lymphedema. I did ask the surgeon about it, and she said she cannot say there is zero chance of this, but she thinks the chance is small since I have had no problem with it thus far. I feel between a rock and a hard place though, and don't know quite how else to proceed. I did check out stem-cell therapy, this seems to be a good therapy and non-surgical. However, if one has had cancer, there is a danger of transferring a stem cell from another part of the body that perhaps contains a trace of cancerous material. The clinicians at the stem-cell clinic said they would perform the treatment after a patient is 5 years away from diagnosis, but that whole discussion made me reluctant to proceed.
Anyway, the surgery is on March 7, and I will have my right arm in a tight sling for 6 weeks. After 2 weeks a therapist will unwrap it and move it gently and place it back in the sling. Weeks later I will be allowed to move it on my own, and then will be in Physical Therapy for some time, doing specific exercises. I am quite dreading the whole experience, and am trying to change my mindset into a non-negative direction since it is either do it or resign myself to not doing much of anything physical in future.
I will be back later,
Love, Mary
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Hi Mary,
I'm going to write a little longer than I usually do as others may not know that individuals with an Ashkenazi Jewish descent have increased risk for cancer.
During the tegengentic conference I was interviewed via a Skype-like video system.The gal asked my history: my grandmother (my mother's mom) was diagnosed with breast cancer at age 94 and died of old age at 98. I was diagnosed with breast cancer last April and my sister about four months later. I have no history of my father's family. He was left an orphan when he was a young teen.
To my surprise the gal asked about my lineage. I mentioned that I am half Jewish and that my father's family originated in Germany.
According to this article (and many other articles);
"Members of the Jewish community who trace their roots to Central or Eastern Europe are known as Ashkenazi Jews.
"Over time, the genetic traits of these early 'founders' have been passed down through generations, including a greater frequency of carrying certain changes in genes known as BRCA1 and BRCA2, which are associated with an increased risk of cancer.
"Women with a mutated BRCA1 or BRCA2 gene have a lifetime risk of between 36 percent and 85 percent of developing breast cancer by age 70. The average woman in the United States has about a 12 percent risk of developing breast cancer over a 90-year life span."
The gal who interviewed me also mentioned Triple Negative.
According to this 2011 study, "Our results suggest that among BRCA1 mutation carriers, as among noncarriers, there are unique characteristics associated with the triple-negative subtype. The findings in Ashkenazi Jewish BRCA1 mutation carriers should be confirmed."
There are more recent studies but this brief finding was the easiest for me to understand.
Yes, I have breast cancer but it's not as bad as my sister's and I am not triple negative. I came to this thread because it was about triple negative and I wanted to try to understand everything she would be going through.
Because I had to leave before my unexpectedly long appointment ended, I didn't have time for the blood test, which I will have next month. If I understand correctly, it will help determine the cancer risk factor for other women in our family.
My sister is going to send me a copy of her telegenetics report when she has time, which I will share with my oncologist. Last night she was doing well. We speak briefly on the phone a couple of times a day. Haven't heard how she's doing today because of the three hour time difference. She got a shot yesterday to boost white blood cells, according to our friend who is staying with her and texts me updates.
Thanks so much for your concern, and all the helpful information you and others have shared with me! XXX
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Dear Gill,
I just wanted to say I am so sorry you are having such an awful time on the Taxol.
I remember when my mother was having the AC, which was having similarly dire effects on her as the Taxol seems to be on you, how conflicted we all felt about the treatment and whether she should continue.
It was so hard seeing her so debilitated, taking to her bed most of the time, in and out of A and E- the worst was obviously when her heart started complaining. My instinct was to cry: JUST STOP this chemo- look what it’s doing to her- but my brain was countering this with: it was never going to be easy; she’s being poisoned; this is giving her the best chance possible of the cancer staying away.
Of course, what the layman such as myself can’t gauge is when the balance tips too far the wrong way( ie the chemo does so much harm to the body that it outweighs any beneficial effect it might be having in terms of the cancer). That is the territory of the experienced oncologist, who has treated hundreds of people and knows what “too much harm “looks like.
It was therefore something of a relief when we turned up to our oncologist’s appointment (all ready to be told, “Yes this is really horrible but you have to carry on”) and she immediately said, “ You have had the most awful time, and I think it’s time to stop this”.
She then put things in context very clearly- and I would say much of this, Gill, despite your slightly more aggressive cancer, applies to you:
- the cancer might not come back( she thought the odds before chemo were 55/45 against it returning).
- any chemo is better than no chemo in lowering then chances of the cancer returning (My mother had, at that time, received 2 out of 4 AC infusions - you did all your EC from what I recall).
- if the cancer does come back, they can’t cure it but they can keep it at bay, sometimes for quite a long time.
Taking all this into account, she had little hesitation in stopping the chemo earlier than planned. And, actually, after she had presented her case, we felt this was a no-brainer.
Overall, you could say my mother is in a similar situation - treatment-wise - to you (Again, I know you have slightly different cancers so this is not a standardised comparison, but then it never is with cancer patients). She has completed almost all of the taxol but fell short on the AC. You completed all the EC but might fall short on the Taxol.
I hope that, if you are unable to finish the Taxol, you profoundly feel you’ve given the treatment your absolute best shot. That’s how we feel about my mother’s experiences.
And I hope our oncologist’s reasoning, as laid out above, gives you some reassurance should you not be able to continue next week.
All the very best to you. I do hope you will feel stronger soon, and able to view the whole situation in a balanced, accepting way.
And if you do want a second second opinion from Dr H on stopping early, he has certainly always said to us that he’s happy to assist further if necessary and (I’m sure) would do the same for you.
Lots of love
Flora x
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Hello viewfinder,
Thank you for keeping us up to date about your sister. I was glad to know that she is in good spirits and that on her second day after treatment she had had no side effects. Let us hope that she does not have any. I do not know why she was told to expect some the next day or soon after. She may not have a any side effects at all during treatment. I did not have any. I do hope she will keep drinking plenty of water.
Judging by what Mary said in her post to you, I think she must have forgotten some of the details that you gave to us when you first joined us. I remember that you told us that you had been through breast cancer treatment for hormonal breast cancer and that you had dealt with it very well. I remember that you told us the sister on whose behalf you were now writing was your younger sister.
I was very interested to know that you had had a very long oncologist appointment that lasted for over two hours. It would be useful if you could give us the details of that appointment and what went on.
In the UK we do have post treatment check ups for some years, but they are mainly physical ones and are not that long. You obviously had blood tests and I do hope you will have good results on Monday.
I was interested to know that part of the appointment was a tele-genetics conference. How long did that last? It was a pity that you had to cut it off.
There is testing here for the BRCA genes on the NHS but not everyone is eligible. I did have an interview at my request with a genetics nurse but she said that she would not refer me for one because back then in 2005 I was nearly 63 and she said that if you had the BRCA genes you would more likely get breast cancer at a much younger age, but remember that having the genes does not mean that you will definitely get breast cancer. At that time older women could get it if they went private.
Since you mentioned having a tele-genetics conference, it looks as though in your country at least they are doing it via a screen rather than having you actually seeing someone.
Do you think you want to have the BRCA genes tested? I remember reading that less than 5% of breast cancers were due to faulty genes. Let us know what you decide.
It seems to me that tele-genetic testing is just a consultation. I think the genetic testing is actually just a blood test.
In your post you said you would get the results of your blood test on Monday and then later on you say that because you had to leave early to get your grandson, you would not have your blood test for a month. Are you talking about two different blood tests, one to look for anything wrong in the blood, and one in a month's time to test for the BRCA genes?
I apologise in advance if I have misread what you have said.
That is about all for today. Have a lovely weekend.
Love.
Sylvia xxxx
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Hello again, viewfinder,
I have just read your post to Mary and I noticed that you had mentioned about the greater risk for cancer with people of Ashkenazi Jewish descent. That makes me understand more the reason for the blood test for the BRCA1 and 2 faulty genes. I read about it many years ago.
Good luck with everything that you do.
Love.
Sylvia xxxx
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Hello Mary,
I was sorry to read that you are having so much pain and irritation because of the problem with your rotator-cuff. I can understand your decision to go for surgery and I do hope all will go well on March 7th. Try to concentrate on that aspect and do not worry too much about lymphoedema because it may never happen.
Thinking of you and wishing you all the very best.
Love.
Sylvia xxxx
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Hello Gill,
I was happy to see you back posting but so sorry to read that you have been having such a difficult time. You have given it all your best shot and perhaps it is time to finish with the chemotherapy and get your body strong and healthy again.
Wishing you all the very best and sending you all my love.
Sylvia xxxx
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Hello everyone,
I just wanted to wish you all a very pleasant Sunday tomorrow. Try to relax and do something that you enjoy.
Best wishes to Gill, Susie, Flora, Mary, viewfinder, Pam, adagio, Val, Hanieh, Marias, Kath, Helenlouise. I do hope I have not forgotten anyone but if I have pop in and remind us that you are still in the group.
Love to everyone.
Sylvia xxxx
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Hello, Gill,
Sorry to hear that you've been having such a hard time with the taxanes. I found them harder than the first lot of drugs but nothing like what you're having to go through. So difficult for you to know what to do for the best and I can see how anxious you must be to be done with it. It was the last cycle of taxanes that sent my toes numb, if that helps at all (!), so maybe two lots is enough. Certainly the difficulties such as the awful taste in my mouth increased with each cycle.
Wishing you an easier few days.
Susie xx
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HI Sylvia
I just wanted to say that I did remember that viewfinder had BC as well, but I must have misread her more recent posts, where it sounded as if she was saying that she had a tumor in the present-tense. Probably my reading too fast.
I hope you have a good weekend as well!
Love Mary
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HI, Gill
I am so sorry too, about your side effects from the Taxol. I wonder if there are more people than we know who don't quite finish. I have a good friend here who did all but one treatment, and she is doing well, I think she is about 6 years out from diagnosis. When I went back to the (new) doc for my first after-treatment visit, she informed me that I had not done enough Taxotere and needed another infusion. I was so upset they dug through my chart (from my previous doc) and said I had done all he ordered, so I was done after all. If I had been her patient I would have been doing more infusions. He also reduced my dose on the last two infusions I had because of my side effects.
At any rate, I have also heard that some chemo is better than none, and sometimes all the treatments are too much. You have been through the mill, and you have a way to go to get back to feeling well. If you decide to stop the Taxol, you have all my support and agreement. We are all individuals, and some of us fare better through this ordeal than others.
And yes, the snow is gone for now, today is a warmish day, but things will get cold again before spring, I fear.
I am thinking of you Gill, and I will double up on the candles tonight at Church, and pray that you will recover as quickly as possible. And your Oncology Registrar may have something to say about the whole thing too, and make the decision for you, as in Flora's story about her mother's journey through chemo.
Love, Mary
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Hi again Slyvia,
I was scheduled for two blood tests during my oncologist appointment last week. I only had one and get the results this Monday.
The other blood test was to be for the genetic testing, but I had to leave to be home on time for my grandson. The two hours included my tele conference interview, meeting with my oncologist, and....of course....waiting between this and that. The second blood test will be next month.
I had a Lumpectomy and 13 radiation treatments. All went well though I experienced extreme fatigue after each radiation session. Doing okay on Anastrozole.
I started participating in this thread primarily for information to help understand what my sister might be going through. As I said before, ya'll have helped me more than I can express.
My sister and I texted earlier today and she is still doing well. No nausea though she is taking medicine as a precautionary measure.
She texted me a gif of a furry, chubby racoon clapping. I asked her if that is what she's going to look like when her hair grows back. Both of us have a sense of humor and we often jest with one another.
Enjoy the weekend.
xxx
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Hi, viewfinder
I am sorry I misunderstood you posts; I do remember that you had (have) BC, but thought I read that you were talking about your tumor in present-tense. So I was hoping you didn't have a recurrence, and inquiring if I just didn't understand properly.
Thanks for your post which explains the point that those with the Ashkenazi Jewish heritage have a bigger chance of getting cancer in their lifetime because of genetics. This certainly seems to have been true in the case of you and your sister. It is good you are having the BRCA test, it will be valuable knowledge for other members of your family. I had the test because I have a younger sister, so she could have the knowledge, but as I said my test was negative.
It looks as though you will have the BRCA test next month, it is a simple blood draw, but it takes a while to get results. The worst pain is to one's pocketbook, my insurance did not pay for it, but I wanted to know. Perhaps your insurance will because of your heritage, I don't know.
Are there any other genetic tests offered to you or your sister?
Getting the shot to build back the white blood cells after treatment is quite common, I had them after every infusion because my counts would be much too low otherwise. She will feel better when the white cells build back up.
Thanks for all the information, it is all quite interesting.
Talk to you soon, love
Mary
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Mary,
I response to your question, "Are there any other genetic tests offered to you or your sister?"
I don't think they recommended any other genetic testing to my sister. She has a written report but hasn't had time to send me a copy. As for me, time will tell. I'll let you know when I get the results but, as you mentioned, it may take some time.
I better find out if it's covered by insurance. I really can't afford paying out of pocket if it's very expensive. Glad you mentioned this!
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Hello everyone
Gill hope you are feeling well now. even I had taxol but I coped well . In fact I had difficult time. With EC. It's surprising how this medicine reacts in a different way . My best wishes .
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Marias - I wish you well with the decision you have to make about surgery! I also am sorry to hear about how the troubles in Venezuela impact on Columbia - we live in very scary times. Your health is the most important thing at this time, so hopefully you can focus on that and that the right path to take becomes clear to you.
My husband is starting to feel a little better - we are now waiting for MRI to check the spinal cord for injury - thankfully, his legs work well. But he is in a lot of pain on the left side of his body and not much feeling or power in his left hand. And yes, it is good to be home with our family again and we do feel safe and loved.
Wishing only the best for you, Marias.
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