Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Mary,
I am just popping in to say that I have had a busy morning dealing with contractors here. I think it is going to be tomorrow before I find time to write anything on the thread. I have to read some more details about the non-invasive alternative treatment mentioned in number 2 of the email. It is all about photodynamic therapy, which is quoted as killing 95% of cancer cells. I would think this treatment is very expensive. As for article 4, about needing an alkaline body but an acid gut, I think it would be useful if we could write a simple list of foods to eat to get an ample supply of both.
With reference to the anti-inflammatory herb, I have bought some ashwagandha capsules and Raymond is trying them out as he has pulled a muscle in his shoulder. He is taking it with boswellia capsules (frankincense). I did not buy the curcumin capsules because they were too expensive here. I shall probably look on line. I hope these work. We did go to our local hospital (minor injuries) about the shoulder and we were told it is muscular, take ibuprofen. No surprise there.
I hope to write more tomorrow. The thread has gone really quiet and there are not enough posters at the moment.
Thinking of you.
Love.
Sylvia xxxx
0 -
Hello Sylvia, Mary and all
It is extremely hot here in NC USA. We had a heat index in the 100's yesterday. Today even hotter. I took my small dog out and felt the concrete. It was unusually hot, so he did his thing and came running back to the door. Usually I sit outside on my patio which is covered to have tea or coffee. Not these past few days. It is July so its expected. I lived in South Florida for several years. It was hot year round. I did not like it. I prefer the seasons.
I've read a bit about inflammation. I believe chemotherapy does much harm. To the heart, among other things. But what is the alternative that has been proven to work in it's place? Though there have been many advances in research, there is so much more needed. To fight inflammatory issues, i take an omega 3 fish oil capsule.
My small raised bed vegetable garden is thriving. It's hot but we've had showers daily. I'm over run with zuchinni and cucumbers. My tomatoes are slowly coming. Peppers of course the hot ones are thriving. I grow a few herbs. I have to be careful as they seem to burn with the heat. My daughter will watch it when i go to St. Maarten next month.
I hope all are doing well. I have some challenges with my residual stroke issues. Weekly therapy helps. Additionally, my appetite seems to come and go. I feel it's due to a few of the medications I take daily.
Happy summer to all.
Val
0 -
Hi Sylvia,
The photo-dynamic therapy does seem very promising; after reading over the article he links to, it seems that forms of it are already being used. If it is as safe and effective as they say, it should be used more widely; as you say, it must be expensive although it sounds as though it wouldn't have to be. He says:
Mathew Gdovin an associate Professor in the University of Texas, San Antonio, (UTSA), Department of biology, has spent the last three years trying to perfect Photodynamic Therapy (PDT) and make it 100 per cent non-invasive.He is now so pleased with his results he has patented his method. Using Triple Negative Breast Cancer (TNBC) – a cancer for which there is absolutely no effective current orthodox treatment - he has shown that injecting nitrobenzaldehyde into the tumour finds the chemical diffusing into all the cancer cells in the immediate area. He then aims a flash of Ultraviolet light at the cells and, within 2 hours, 95 per cent are dead. It is a figure that dwarfs any claims made about chemotherapy (1). (The results were published in The Journal of Clinical Oncology).
The American Cancer Society published these next results about the method, but in their tests they used a chemical which Woollams says is not as efficient as it could be, and is being phased out. About the method:
- It has no long-term side effects when used properly.
- It is less invasive than surgery
- It usually takes only a short time and is most often done as an outpatient.
- It can be targeted very precisely.
- Unlike radiation, PDT can be repeated many times at the same site if needed.
- There is little or no scarring after the site heals.
- It often costs less than other cancer treatments.
Doesn't this sound like something we should be working on diligently, as well as all the drug research?
Article 4 talks about needing an acid gut but an alkaline body: apparently this can all be accomplished by the proper diet, which is the Rainbow Diet which I think we all are familiar with by now.
I am going to ask about the ashwaganda next time I am at the Health Food Store, if it's too expensive there I'll check online. I mentioned previously I found the article Woollams' wrote about his surgery which he had some time ago. He does not mention taking ashwaganda or frankincense for his recovery, but instead mentions Vitamin E, Vitamin D, fish oils, grape seed extract and nattokinase. Also wormwood and raw goat's, cow's, and sheeps' cheeses. Not sure why now he says he took it for his surgery recovery?
We are having a small break from the excessive heat today, hope to be able to do some things outside before the heat returns tomorrow. Our pattern is very high heat and humidity for days on end, and it builds up until we have a big thunderstorm and then a day of two of cooler temps.
Have a good weekend, Sylvia!
Love, Mary
0 -
Hello Mary,
Thank you for posting that information about photodynamic therapy. It looks as though we have both been clicking on the extra articles about this entitled Latest developments in photodynamic therapy or PDT. I think it is all very interesting and the sections are interesting – What is photodynamic therapy, why had PDT suddenly become of interest, PDT is now an officially approved cancer treatment, The advantages of PDT, The future of PDT – is it here already, Hundreds of PDT research studies.
I was interested to read all these details, because twelve years ago, when I was first diagnosed and very hesitant about orthodox treatment, I picked up a copy of icon magazine and discovered such a lot in it. As you know I found the name of the herbalist Gerald Green and had some treatment through him. I also saw the name of Dr Julian Kenyon at the Dove Clinic in Hampshire, UK, and read about his treatment with photodynamic therapy. I actually phoned him and was told at that time that this treatment would only work with small tumours. That ruled me out. The price would have ruled me out anyway, as I seem to remember it was about £3000 to £4000. I have no idea how much the cost would be today and whether the PDT is the same. To quote the article "Dr Julian Kenyon at the Dove Clinic in the UK has been working with an algae/chlorophyll agent and ultrasound. It is called Sonodynamic PDT. No clinical trials exist but they do have an impressive record of patient case history".
I noticed that on the last page it says "Studies have shown that PDT can work as well as surgery or radiation therapy in treating certain kinds of cancers and pre-cancers". It then goes on to quote the advantages that you have posted.
I noticed there is no mention of its being able to replace chemotherapy.
Of all the treatments I think chemotherapy is the one that probably needs to be replaced urgently, especially if it is true that it is not that successful and definitely would appear to do the most harm. The women around me that have had just surgery and radiotherapy do not seem to have considered their cancer journey as those of us who have months of chemotherapy. Not that radiotherapy and surgery are without problems. All of them have kept us alive.
I was glad to read that you have mentioned, once again, the importance of an alkaline body but an acid gut. I think we have all read this before, and we should know that we have to get it through diet. I think, in addition, it helps if we take a good probiotic supplement as well.
I do not understand about Chris Woollams and the difference in what he said he took. It does not sound as though it was very long ago that he had this accident. Perhaps he took all of those things and it could be that immediately after surgery when he was in such pain that he took the ashwagandha, boswellia (frankincense) and curcumin. No matter what, vitamin E, vitamin D, fish oils and grape seed extract would not have done him any harm. I know nothing about nattokinase, unless it is a Japanese fermented product Natto. I have never seen in the shops here but apparently does not smell very nice.
As for wormwood (artemisinin), as you know I took that back in 2005 prescribed by the then herbalist at icon, Gerald Green. It is used to kill of yeast infection and apparently there is a lot of that in the West. I seem to remember Gerald Green also saying that it was alright to eat raw goats cheese and sheep cheese, but I do not remember cows cheese.
I think with all of this information we just have to decide what is best for us and go for that. What we do not want to do is end up leading a miserable life.
I do not envy you your heat. Val is also saying how hot it is where she is. It is quite a nice day here in Exmouth at 21C.
I forgot to say that I do think it is important to keep inflammation at bay, because I do think it is the beginning of lots of chronic illness. It looks as though a healthy gut is the key to that. How do you find out, before it is too late, that you have an unhealthy gut? I do not know if they have tests for that.
What did you think of Donald Trump with Emmanuel Macron in Paris yesterday?
Love.
Sylvia xxxx
0 -
Hello Val.
I have got to take a break. I shall answer tomorrow.
Fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
What do you think has happened to Hanieh? We have not heard from her in three months.
Fond thoughts,
Sylvia.
0 -
Hello Val,
Thank you for your post. I do not think I could survive in the kind of heat you are having. I am not surprised your small dog came running back.
I can understand that you like the seasons.
I was interested to know that you have read a bit about inflammation. Think it is important to be informed about this, because, from what I have read, it is the beginning of the route to different chronic illnesses. To avoid it we have to look after our gut and make sure we are eating healthily to keep it healthy.
I think we all know by now on this thread that chemotherapy does a lot of harm. Taxol is said to be very harmful to the heart. I was told Taxotere is less harmful, but they are both drugs that belong to the group known as taxanes, so I do not think there can be a big difference. I found, during my treatment, that I seemed to have more side effects with Taxotere than with the EC (epirubicin and cyclophosphamide) that I was on for the first three months, but, of course, hair loss with these two came very quickly. It was not until the second three months that I lost my eyebrows and eyelashes and had a strange metal taste in my mouth and that was when I was on Taxotere (docetaxel).
Although we know all the bad things about chemotherapy and how long it takes our bodies to recover, years rather than months, what choice do we have if we are told we need chemotherapy? It is worrying to read that studies appear to show that chemotherapy spreads cancer in the body. I do not think that I would have survived without it and I have had twelve years in the clear, and I hope more to come. I think women need to do careful monthly breast tests and get to know their breasts and know when something is not normal for them. If you can go through breast cancer without chemotherapy and just perhaps surgery and radiotherapy, it is that much easier to deal with and a shorter journey. I think women should be informed enough today to have frank conversations with their oncologist and to question everything. Staying quiet and just accepting is no longer acceptable.
There may be a lot more research but orthodox treatment is still using chemotherapy drugs that are quite old, even though it is introducing relatively new ones. I think that fluorouracil (F) was introduced in the fifties and I think cyclophosphamide (C) is just as old. The brand name is Cytoxan.
I was interested to know that you are taking omega 3 fish oil capsules to fight inflammatory issues.
I was very interested to know that you are growing some vegetables, especially that yu are growing hot peppers. They are said to be very healthy.
I do hope you will continue to make progress with the residual stroke issues. What exactly are you doing as a weekly therapy?
Just try to eat a mixed healthy diet and eat as you feel able. I would think cucumbers and all sorts of melons would be tempting in your weather.
Sending you fond thoughts.
Sylvia xxxx
0 -
Hello Mary, Rhonda, Pam, Val and InspiredbyDolce (Debra),
I just wanted to say thank you for the effort and contribution you make to this thread.
To adagio, I hope you are enjoying your stay in the Republic of Ireland and Northern Ireland. I look forward to some thoughts about those two countries.
To Lou, what are you getting up to now?
To Kath in Australia, how are you and how is that interesting work you do progressing?
To Hanieh (Iran), Marias (Columbia) and Amanda (England, UK). I think you may have left us but I hope not and I do hope you are not having any problems.
Best wishes to everyone and to any newly-diagnosed person viewing but not posting, do not be afraid to come on board and ask any questions you like.
Best wishes.
Sylvia xxxx
0 -
Happy Sunday Everyone,
A friend gave me a low-level, basic Fitbit for free, and I've been having an interesting time with it this week. I had an idea about what they do, but I didn't know how extensive the data was. In addition to activity, if you allow it to, it tracks calories in and out, plus restlessness during sleep. Competing against my own stats was great. On my best day during the work week, I had over 10,000 steps, and a cumulative 4 miles, with 1855 calories burned. It definitely pushes me to add steps and consider what I'm eating.
What I thought was most interesting was that on a day off, when I had the freedom to indulge in it, my body needed over 8 hours of sleep, plus a 2 hour nap. Believe it or not, though, the walking generally gives me more stamina.
Of course, I don't share my real name or birthday with Fitbit. But what I thought was most outrageous is that while I was shopping at Target, I was getting messages from my smart phone asking me to post about how my shopping was going at Target. I fixed that when I disabled the location feature on my phone, but the warning I got was, "you can't sync your Fitbit if you don't allow location tracking." To which I said, fine, I'll sync it when I choose. I always wonder why people voluntarily allow such intrusive features like tracking into their lives, but I guess that's the norm now. So that was creepy to me, but overall, I really enjoy seeing all of this information.
Otherwise, I'm doing my best with protecting my rest time at home. I've decided that my aches and pains are a combination of treatment side effects and menopause. And I know we won't identify the causes of our cancer, but in my case, I thought birth control and stress were major factors as well.
I finished chemo last November, and I've noticed that my taste buds are coming to life in a pleasant way, especially with tart flavors.
I've been reading The Handmaid's Tale. It's fine, but I'm not enjoying it much. I probably should be reading something lighter for summer. Finally, I didn't get any good pictures of our July 4th celebration, but this gives an idea of what it's like. Sylvia, in this case, in that area, it was a smoky, pyrotechnic free-for-all in the streets. It's always a miracle if no one gets hurt. Imagine hundreds of thousands of houses for miles setting off illegal fireworks, plus some like these. As we drove home, it looked like a fireworks show for miles on both sides of the freeway. I was glad I went, even if I don't really care much about fireworks. But I can tell you that my young nephews were in absolute heaven
.
0 -
Hi, Sylvia
I wish I knew what Hanieh was up to; like you, I hope she is happy and healthy and just decided not to post here anymore.
I'm not sure what to think of Trump and Macron, they seemed to be friendly. The media made a big deal out of Trump telling Macron's wife she was in great shape. I didn't think much of it myself, but I was listening to talk radio in the car one day, and a French lady called in and said that had been a great insult to Madame Macron, because she is quite a bit older than Monsieur. She was saying that Trump meant, great shape for an older lady! Wow, I wouldn't have thought of that, I thought it was just Trump being himself. I know I find myself sometimes in social situations saying things I wish I wouldn't have while I am casting about for something to say to someone I don't know very well. The media also was surprised that Macron was friendly to Trump because Trump backed out of the Paris Climate Accord. (In my opinion, I thought a wise move.)
I got back a little while ago from my brother's garden, I picked turnips, beets, carrots and some peppers. He also gave me one tomato. He has a lot of them but very few are ripe, probably this week they will ripen more. I picked some wild blackberries but the (expletive) Japanese beetles have eaten more than we could pick, so frustrating, we all look forward to blackberry time. We are having a bad infestation of the beetles this year.
We have had a 2-day break in the extreme heat, but it is returning for the rest of the week, I should have more time inside. Actually, some afternoons I feel like I am trapped inside by heat!
I will talk to you again soon, love, Mary
0 -
Hello Mary and everyone,
I thought I would post the inside of one of the cupboards where I keep tea and oil. As you can see, I am very much into green tea, along with some white. As for oil, I have extra virgin olive oil and canola oil.
Any comments welcome.
I have recently discovered Japanese rice tea, which I like very much. I have not bought any yet. It is a mixture of green leaf tea and roasted brown rice. Do you know it?
Fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your latest post. Like you, I hope Hanieh is alright and the same goes for Marias. If they have decided to move on and they are able to be in contact, it would be nice if they would let us know.
I think the Trump/Macron event was just a show. I do not think much of Macron. He reminds me too much of Tony Blair and I do not like the completely empty face that stares out at us. I would he be very surprised if he goes far. I think he sees himself as a re-incarnation of Louis XIV, the Sun King. Macron's wife is over twenty years older than he is and used to be his teacher. She is in her sixties. As for Trump, I do not know what to think. I was listening to a ten minute feature on Radio 4 yesterday, entitled a Point of View. The man here summed up Trump by saying he thought he was a catastrophe. I think he is just "different"!
You are lucky to be eating those freshly picked vegetables from your brother's garden.
I have a few more posts to do, so I shall sign off for now.
Love.
Sylvia xxxx
0 -
Hello Pam,
That Fitbit you have been trying out sounds very interesting. Will you keep using it? I am not surprised that you need eight hours sleep plus a two hour nap. Your body is still recovering from your treatment. I have heard that an afternoon nap is beneficial for all of us.
I found the tracking bit on Fitbit somewhat worrying. It seems we are all being watched, listened to and tracked. I find if I am looking for something online I find loads of adverts all about it following on. I do wonder if we have completely lost our privacy. Have you read 1984 by George Orwell? It is a classic of English Literature, along with another book by him, Animal Farm.
I was glad to read that your taste buds are gradually coming back to life. That is a good sign. I do remember the metallic taste in my mouth when I was going through docetaxel (Taxotere).
I read the Handmaid's Tale some time ago. I used to read all the novels by Margaret Attwood. I got to know her books when I was living in Canada. I rarely read any fiction now.
Thank you for posting the photograph of the fireworks and the children holding what looks like sparklers. It is strange how fireworks that are so dangerous and polluting are always part of big celebrations.
Keep well and enjoy the summer days.
Love.
Sylvia xxxx
0 -
Hello katie420,
I am answering your PM on the thread, so that everyone can join in and relate their experiences as patients going through treatment for breast cancer with triple negative receptors. We all have different experiences.
I was very glad to know that your mum is now two years out since her diagnosis. She must be very relieved to have that journey behind her.
I think I was very lucky in that I had a pretty smooth journey through my cancer treatment and did not have a lot of the awful experiences that some of the women have related. I was very frightened and emotional at first, but when I decided to start orthodox treatment after delaying, I settled down very quietly and just got on with the treatment and everything it entailed.
I lived more or less normally and carried on with the things that I did before diagnosis, except that, if I felt the need, I would have a rest in the afternoon.
I made sure that I had healthy food each day, even if I had small meals often, rather than large. I made up my own mind about healthy food. On the thread I think we all probably follow the Rainbow/Mediterranean diet, brightly coloured fruit and vegetables, nuts, beans, pulses and lots of oily fish. I do not eat meat or dairy products, avoid sugar, alcohol and junk foods. For some years I have been including fermented food in my diet.
I try to keep active, physically and mentally and to avoid negative stress. Above all, I remain positive about having had breast cancer with triple negative receptors. I and others are proof that we survived it all.
I do hope you will come and join us and tell us a bit about your mum's story and how you, as a carer, have got through the past two years.
That is all for now.
Fond thoughts.
Sylvia xxxx
0 -
HI, Pam
I was also given a Fitbit by my sis-in-law, but I haven't set mine up yet. She used one when we went to Europe and was counting our steps every day, that's all she used it for. We had fun with it, I was amazed at how many steps we would walk in a day. I'm not sure I want to know how restless my sleep is, I think I already know that when it's hot like this, I toss around and when it's cold I sleep much more soundly. I agree I don't like all the location-tracking stuff, although I have let some sites know it, such as Google Maps and Uber if I'm in a city. I am rather pragmatic about it though, between our smartphones and banks, credit cards, cars and TVs, and electric meters, and just the fact that there are satellites in space above us there's not a lot of privacy anymore. I guess the only option would be to get off the power grid and toss the cellphone and credit cards and burn wood for heat. That would probably not keep the tax-collectors from finding one however!
I definitely believe aches and pains are a follow-up side effect of cancer treatment. That should gradually get better. I never was a good napper, but as I moved away from chemo, I found I would be very tired by about 2 PM, and I would lie down for an hour or two. I usually wouldn't sleep, but just resting helped me get through the rest of the day.
I have also read The Handmaid's Tale, I think I've read most of Margaret Atwood's books. I think there is a movie being made of it now, or perhaps it's already made. If you want something lighter and like Atwood's style, perhaps try her book titled Lady Oracle, it's a lighter read, and it's both funny and suspenseful. Another book(s) I find laugh-out-loud hilarious is The Hitchhiker's Guide to the Galaxy by Douglas Adams. It was first published in the '80s, it's one of my favorites. It's rather absurd, and very clever. There was a movie made of it too, but the movie wasn't very good. And it really does make me laugh out loud in places!
There's something about males and things that go boom, they all seem to love it! I was at a party on the 4th, there must have been 25 children there and at dusk they were all so excited. They ran around in a field in front of us with sparklers and small displays, they were so excited! Then at dark we had the bigger show, I was told that the firework I brought was the best one, fancy that. All the guests were asked to bring one large-ish firework, it's the only one I bought this year.
I'm glad your taste buds are coming back to life, that makes cooking easier and more pleasant. How is your appetite?
I'm going to head outside now, any chores I have outside needs to be finished by noon, after that it's just too hot to exert much out there.
Talk again soon, love,
Mary
0 -
Sylvia,
Your tea cabinet is so neat and tidy, I should post a pic of where I keep mine; you would probably be disturbed because things are not in order whatsoever! I was thinking that today I will brew up several bags of green tea into a glass jar and put it in the fridge. That sounds very refreshing, I think I would drink a lot of it chilled in this hot weather. I have not seen the blend with Japanese rice tea and green tea. I was in the health-food store yesterday but I forgot my list, I did get a couple of things that I remembered. They might have had some of that tea.
I ate a tomato from my brother's garden last night, my first home-grown of the season. What flavor it had, puts to shame the ones in the store. The beets are very good, the turnips had gone too far, and were very bitter. He will plant some more for the fall, that is the best time for them. The carrots are still too small, but tasty.
My DIL had her first oncologist appt. last Friday, after going over all her stats and tests, he announced her cancer-free! Imagine that, in 6 weeks she has gone from scared to death to cancer-free. Her breast reconstruction is ongoing, other than that, she is finished. No chemo, no radiation, not even a pill to take. She is a lucky girl indeed!
How funny that Macron compares himself to the Sun King! Delusions of grandeur, do you think? I think so many people are so tired of politicians and their grasping for power and authority.
I will talk to you again soon, I have a busy morning ahead.
Love, Mary
0 -
Hello Mary,
I have always been very neat and tidy. It just comes naturally and because I am a minimalist in every way, it is not difficult. As for green tea, I do think that the best way to have it is by drinking the leaf versions. I always have this in the morning and find the best ones that I have had are Clipper green leaf tea, Green leaf gunpowder tea and Green matcha tea. I like them strong and very bitter. I do drink decaffeinated green tea by Clipper as I do find caffeine has a strong effect on me and I have read it is not good for your bones. I do enjoy Clipper white tea and Rooibos tea. Before bed I always have strong chamomile tea. I usually buy Pukka three chamomile tea. I am amazed at all the different mixtures of green tea that are now on sale, but I think if we are drinking green tea as an anti-cancer drink, the pure leaf version is the best. I did see the green tea with roasted brown rice in my local natural food store today. It was by Clearspring but looked like bags. At £3.15 for a small box of 20, I thought it was overpriced.
I can imagine how good that tomato from your brother's garden tasted. I think the food in the supermarkets is not that fresh. I am lucky to have a small fruit and vegetable store in the town and most of the produce is local, often to Devon and Cornwall or at least to the UK. The prices are very reasonable.
I am amazed that your daughter-in-law has had such a short cancer journey. She was very fortunate not to have had chemotherapy or radiotherapy. I cannot remember her exact receptor status, but if the experts can bring cancer, breast cancer in particular, to a status of NED then that is progress indeed.
Since she has no pills to take does that mean she was triple negative receptor status? I thought all hormonal breast cancer survivors were put on ten years of a combination of tamoxifen and aromatase inhibitors. Is she not going to have follow up examinations?
Yesterday I received my latest free copy of Vita magazine, from Breast cancer Care. I do recommend it to all newly diagnosed patients: vita.org.uk. There are lots of interesting, easy to understand articles. There is an interesting article entitled Feeling the heat, hot flushes and breast cancer.
There is a question and answer section about having radiotherapy at the same time as surgery. There is another one about having finished treatment and being worried about breast cancer coming back. What symptoms should a person be looking for and report back to the hospital.
Do you read this magazine?
I cannot believe how quiet the thread is and I do hope it is because it is summer. Do you think everyone is on Facebook? In the Vita magazine there is a page about the social networks and how in the last few years social media support networks for people with breast cancer have flourished. There is the following question: why are more and more of us going on line for support? It is something that does not appeal to me, although I have been asked on occasions to join, but I feel concerned about who is checking what is being said.
That is about all for now.
Love.
Sylvia xxxx
0 -
Ireland is beautiful.
A few photos of our journey
0 -
Your photos are fantastic! I needed a reason to smile today - thanks
0 -
Hello adagio,
Thank you for the beautiful photographs of Ireland and the one of yourself. You look great and very happy.
I have been thinking of you quite a lot as I listened to the weather forecast on a daily basis and I know it is always very changeable for Northern Ireland and Ireland. I am wondering where exactly you are now.
I do find that photographs are a great addition to our thread.
Enjoy the rest of your holiday.
Fond thoughts.
Sylvia xxxx
0 -
Hello VL22,
I was so glad to know that you enjoyed adagio's photographs. I am sure this will make her very happy if she is still reading the thread while on holiday.
You are quite welcome to post here as you go through chemotherapy and may have questions we can answer and we can certainly support you.
I was most interested in the details of your treatment so far and your diagnosis, especially the change in receptor status before and after surgery. I noticed that it is the grade and ER and PR receptor status that have changed. Did your medical team give you any reason for the change in these things?
As for the grade, grade 3 is very common with triple negative status. Some patients have grade 2, but grade 3 is the most common.
As for the change in receptor status, that was very quick after the first diagnosed status. Did you get any explanation for this?
I see that you are starting your chemotherapy on July 23rd and that you are having standard treatment of doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan) plus a taxane drug, in your case paclitaxel (Taxol).
Do you know whether you will be having treatment every three weeks or every week? Judging from the posts on the thread, women seem to prefer having treatment every week.
We shall be thinking of you when you start treatment and if we can help in any way, please let us know.
Fond thoughts.
Sylvia xxxx
0 -
Came across this article, with some documented feel good miracles in it!
https://www.forbes.com/forbes/2009/0302/074_cancer...
0 -
Hi Sylvia, thanks for the warm welcome! I was actually diagnosed in May with 2 small ER+ tumors. I thought I was so lucky - just radiation! Well, during the lumpectomy a third tumor was found, that was missed by all the screenings and it was TN 1 cm . I cried for 2 days, googled TNBC and was sure I was going to die. I also had a positive intramammary node - a single cancer cell. The Dr said it changed nothing about my diagnosis, he just scooped that node out and it was in the breast tissue, but don't read about it online!
My chemo is DD AC every other week for 8 weeks, then 12 weeks of Taxol, then radiation. I'm willing to do everything to beat this - I have a wonderful husband and two sons ages 13 and 16.
Thanks for this forum - I'm not from the U.K. But it really helps me stay positive
0 -
VL22 welcome to this wonderful thread. You will find a wealth of information and camaraderie that is to be shared.
Sylvia I am here and active. I do not like Facebook much. I have one, but the friends I have prefer other means of communication. So I'll be here.
It is oppressively hot here. We now have heat warnings which are different from heat advisories. I plan to relax in the air conditioning with a cup of green tea. I am working on 2 manuscripts for submission to my agent. I find that though my ideas run very fast, my typing is slower.
So I will type, then take a break and read a book. I prefer mysteries that are older.
0 -
Hello VL22,
Thank you for your post and all that additional information. You have been through a lot but you will find that when you start your chemotherapy you will settle into a routine and gradually feel better. I can understand how you cried for two days. When I was first diagnosed I was very quiet, probably in shock, although I somehow knew that it was breast cancer.
Back in 2005 when I was diagnosed there was no mention of TNBC or negative receptors. I was told by my GP, after examination, that she was sure I had breast cancer. I was referred to a breast cancer consultant who examined me and did a fine needle aspiration. Sh said she thought I had breast cancer but she had to prove it. The next day I saw her in clinic and I had a mammogram, an ultrasound and a core biopsy. That was in the morning. I then returned to the breast cancer consultant, who told me that I did have breast cancer and that it was not hormonal and that the prognosis was not good. It was that evening that I cried and cried, but I did not cry again after that. She told me she would see me again in two weeks to decide what to do. After those two weeks I went back and said I had decided not to have my treatment for the moment. I had prepared a questionnaire for her and she answered them all.
It was through the questionnaire that I learned that I was ER- and PR-. There was no mention of HER2 and no mention of TNBC. I was told the tumour was 6 + cms and grade 3. I delayed my treatment from June until October and tried various other treatments through referrals. I returned to the hospital in October, ready to start my treatment. I would not advise anyone to delay.
I learned myself about TNBC and I learned also that I was HER2-.
I would tell newly-diagnosed patients not to Google. There is too much doom and gloom about having triple negative receptors and I think this is mainly because they do not have drugs to give you after standard treatment, as they do for hormonal breast cancer and triple positive breast cancer. I see this as a positive. Since finishing treatment I have done everything to have a healthy diet, keep active, mentally and physically, and to avoid negative stress. I have now passed the 12 years since I was diagnosed.
Be positive about being negative. You do not have to face ten years of tamoxifen and/or aromatase inhibitors, which have nasty side effects.
The orthodox treatment is more or less the same for us all. A combination of surgery, chemotherapy and radiotherapy is what we get. The drugs are roughly the same and have they have been around for years. New ones are sometimes added.
Be open with your oncologist, breast cancer consultant surgeon and radiologist. Do not be afraid to ask questions and do not be intimidated. It is your body and you must be your own best advocate.
You will get through your chemotherapy. Just take one day at a time. Keep well hydrated, rest as much as you need, be strong and keep looking forward. If you feel you can, you might like to read from page 1 of this thread and work through. It is full of stories from all kinds of women and it is full of information and tips on how to get through this journey. Your husband and children will help you to get through. Do not hesitate to ask any questions that come to mind.
I shall be thinking of you as you start chemotherapy.
Fond thoughts.
Sylvia xxxx
0 -
Hello Val,
Thank you for posting. I am so glad to know that you are not a Facebook fan. I am sure it is good for some but I feel glad to be part of a forum backed by a cancer charity.
It must be hard to cope with that heat.
Relaxing in the air-conditioning with a cup of green tea seems ideal. Today in Exmouth it is as though summer has said goodbye! It has been pouring with rain through the night and all day. It is too much rain in too short a time. That is England for you!
I was interested to know that you are working on two manuscripts for submission to your agent. Keep us posted about them.
It looks as though you have found a good method for working. It is refreshing to take breaks between anything that requires a lot of concentration.
Take care of yourself.
Fond thoughts.
Sylvia xxxx
0 -
Hello Debra (InspiredbyDolce),
Thank you for the link to the article. I shall have a look at it during the weekend and then post some comments.
I was looking at the TNs thread and feel so concerned that so many women, especially younger ones, are being diagnosed with breast cancer. There has got to be a reason for this and I would like to see more research going into why this is happening. We know there are quite a few risk factors that we are told about, but I just wonder what exactly is going on.
It was nice to see you back on the thread. On TNs I recognise so few names now. I was surprised the other day on one of the other threads to see someone answering a post that Titan did back in 2013! The person was posting as if Titan had posted recently. Do they not look at the dates? It got me wondering how Titan was. She inspired me to start this thread which was originally to bring the UK out of the dark ages with TNBC.
Wishing you all the very best. I shall post when I have read your link.
Fond thoughts.
Sylvia xxxx
0 -
VL22 - so glad you liked the photos and that they made you smile. When I was diagnosed in August of 2012, I was in shock, and I honestly believed I was going to die and that I would not be around that Christmas - I even apologized to my children for having to loose their mother while they were so young. Fast forward 5 years, and here I am travelling the globe. I will be honest, and say that the treatments were not pleasant, but once you get started on the plan, I think you will be fine.
My iPad is going wonky here, so I will try to continue lste
0 -
HI, Sylvia
Is your birthday in September? I was thinking since you are so neat and tidy, you would fit in the mold of a Virgo. I am a Virgo, although I am not as organized, I am more inclined to shove things into closets if someone is dropping by, and then later can't find it!
We got some rain last night, which is exciting because it has been so hot. Yesterday I took a couple of friends shopping, and the thermometer on my car said it was 106F, that's 41C to you. Today is supposed to be a little cooler, what a relief.
Our neighborhood has been shocked by the suicide of a friend and neighbor a few days ago. A family man only 50 who always appeared friendly and cheerful whenever one saw him. Still a mystery as to his reasons. Odd to think how so many people are fighting for life, and some just throw it away.
My DIL's cancer was E+P+H-. She had a small tumor in each breast, and she had both breasts removed and is doing reconstruction. No node involvement, and nothing showed up in any of her scans in any other part of her body. The doctors decided that since it was caught so early she could go without chemo and radiation and she believes she will not even have to take the AI. I am going to double-check with her on that, because I thought she would have to take it too. She has gone from being told she has cancer, to being told she is cancer-free in 6 weeks! She will be going back to the plastic surgeon quite a few times to finish up her reconstruction, and will probably see the oncologist a couple of times a year. Her genetic tests also came back negative. We have another friend who had the exact same kind of BC as she did, but genetic tests were positive. She also did not have chemo, but will take the AI for 10 years.
I do not get the Vita magazine, it sounds very interesting. I could probably look it up online. I get so behind on reading, I let my magazine subscriptions expire because they would come and then the next one would come and I hadn't read the one before. I think days are numbered for print magazines, there is just so much information to be found everywhere online. I am a recipe hoarder however, I will never live long enough to prepare all the recipes I save, I have cut back on it and no longer buy cookbooks, so am trying to reform!
As to what symptoms to report to the hospital: when I was diagnosed with TNBC, I was told that the possibility of local BC recurrence was small, but recurrence, if it happened would probably be in lungs or brain. I wish that we TNs could have scheduled screenings on these areas, although I have read that there are no good screening tests for early lung cancer. And brain MRIs are too expensive, they say. Over and over we are told how good it is to catch things early, but how can we if we are not screened? I asked my MO that question, she said "but you have no symptoms." My response, "Well, if I have symptoms, it's probably no longer early, right?" That is a pet peeve of mine!
I am on Facebook, but don't post much there, and I don't visit it every day. Many people have their smartphone with them at all times, whatever they are doing they can snap a picture and instantly post it on Facebook to share with all their friends. They assume that everyone will be interested in what they are doing, usually a few people will comment, sometimes many, many people will comment. I used to get frame-able pictures of children in the family, now I do not get any, but they often post pictures of their children on Facebook. That is my favorite part of Facebook, it lets you see how they are growing. Some people post pics of the meals they are being served in restaurants. I do not have my phone with me every minute, yesterday I forgot it altogether and it doesn't bother me, but some of my friends cannot function without their phone right in front of them at all times, which seems obsessive to me. I do not care for the BC support groups on FB, the groups here at BC.org are the ones where I have felt at home, I like the more in-depth relationships that develop. In my opinion being on this thread and posting on Facebook are apples and oranges, very different things. One more observation: I think FB can disturb some people who partake of it often; one sees people posting happy pics almost always, of wonderful trips they are on, happy people and laughing babies. If you let yourself, you could think that their lives are always so happy and so much better than yours. I think some people are falling into this, and becoming depressed when they compare the reality of their lives with what they are seeing on FB. I have talked to 2 of my nieces about this, and they admitted to being in this situation themselves. I think it would benefit them and many others to visit FB less often.
The question of online privacy is another thing! Personally, I don't thing we have much privacy anymore no matter what we do.
I see we have another poster, I have catching up to do! Talk to you again soon,
Love, Mary
0 -
Hello Sylvie, Mary and all.
Im back!!!
My surgery was on 4 of July because my flo and low defenses. The doctor did a Quadrantectomy and during ther surgery he took away 2 centinal nodes and 2 lymph nodes. One of the lymph nodes was bad. and the doctor took away 19. Only one was bad.
After the sergery I come home. The first days after that was hard time and I can not move my arm. My litlle sister came from Bogota and stay here for 10 days. I have to use a post surgery brasier and was hard to put it. Now I can move my arm and my breast is getting better. I only have a scar under my armpit and my nipple retracted a lot, and when I asked the doctor if he was going to return to normal, he told me to thank him for having it
The doctor send me to the Physiotherapy and lymphatic drainage. I hope to start this week.
My tumor doesnt disappeared it still was 1.2 cm so my response to neoadjuvant chemotherapy was partial so maybe I will have to take more chemotherapy soon. I have an initial appointment to start radiotherapy but I still do not know how many sessions I have to do.
This days I feel more scare that never.
I hope everyone is really fine.
abrazos
Marias
0
