Calling all triple negative breast cancer patients in the UK
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thanks adagio
I start in a week. Have some pain under my arm from one of the tats done Thursday particularly in the morn then it settkes. Maybe a bit inflamed bit hopefully will settke
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Hi Kath,
Hope all will be better for your rads. Just a little more faith and patience, you're almost done.
Hi. Adagio,
Thanks for you kind words and concern. I always smile with your good news. No more doctor and hospital for a year. Hopefully forever. You're on your way to beating cancer, Congrats!
I believe this is my second happy dance for you!
Hugs,
Gina
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Hi Mary,
I miss you...
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thanks Gina u are always so calming as well! Hope all is well with u
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Hi Gina,
I just finished Taxol number 7,I have 5 more then surfer then and radiation.I hope your hand is feeling better.
Rhobd
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HI, Gina,
Thanks for the cross-eyed cat, I love cats! Also dogs, horses, birds, well, lets say all of our animal friends, I draw the line at ticks, chiggers, mosquitos, cockroaches but most other bugs okay with me too. Especially when they stay outside!
My mews..........I have had a very busy week. Had to sit in meetings a few hours on Thursday and 6 hours yesterday. 6 hours of sitting with feet down is not comfortable for me, last night my feet and legs were just pins and needles, my left leg is still not over it. Darn neuropathy! I seem to need the perfect balance of movement and sitting (with feet up, preferably) to feel the best. Wednesday I traveled 2 hours to the city with some cousins to visit our elderly aunt who is a retired nun. She is 92 and is doing quite well. She is a nun in an order that works in the medical field, she was a pharmacist. She has done some different things as well, traveling to missions and working in hospice care. A very admirable lady in every way. I wish I could say I was like her, but I'm not, I talk entirely too much!
I am sorry about your hand issue, hope it resolves soon. What will they do next time? I had a medi-port so all my drugs were put into that, it was a painless procedure to get the drugs. The only bother was getting the port inserted and then taking it out was not quite as simple as I thought. The nurse would always drip my chemo drugs, one time only she pushed the pre-chemo Benadryl and I got a bad reaction, my legs began involuntarily twitching and jumping, it was like trying to jump out of my skin! So that did not happen again. Don't know why they try pushing things, maybe just to hurry the procedure along?? Doesn't seem like a good idea.
i didn't have radiation either, it sounded like an either/or decision at the time; with most doctors, according to what I have read here on these boards, opting for it just to cover all bases.
We are having a warm, windy day; we have strange winter weather these days.
Talk to you later, Mary
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Rhonda,
You're just about halfway through. I thought you already had the surgery. My bad... Good luck. My hand hasn't changed a bit. I am putting Triderm ointment on it. I guess it just the bruising from the premeds being pushed. They did use the pump on me but only during the Docetaxel.
Regards,
Gina
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Hi Mary,
It's good to hear from you again.
So you like animals, me too especially dogs. I also hate bugs, me and my kid are both allergic to insect bites.
What are all those meeting you're attending for? Pardon me if i am a little bit nosy, Lol. You may or may not answer. Sorry to hear about your feet. You've always had a problem with them. I wish you could find a solution for them. Can't you just raise them on the table like a boss during those meetings of yours? Lol!
My sore hands seems to be just a bruise from the chemo infusion and it doesnt seem to be spreading. I hope it doesn't pose a problem on my remaining infusions. I dread having a port, especially now that i am almost done with chemo.
Wish you happier days ahead.
Take care,
Gina
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Hi Sylvia, Mary and all
I'm sorry to report that my friend is having a recurrence and she has to say Goodbye to her breast. I'm very down today and there seems nothing to lift me from this state of depression. She is not 30 yet. No family no children. Her mother is suffering the most.
My scares of recurrence had somehow subsided and I was enjoying a normal life. But with the deep feelings of sorrow for my friend, my scares and anxieties have returned. On her first diagnosis she had a 3.5 tumor nod negative pr, er+. I don't know what her recurrence is.
Also we have lost some of our firefighters in Tehran which has had a very effect on all here. I wish I could always come here with some good news to keep in touch. But...
Love
Hanieh
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Hello everyone
I'm finding I don't have time to keep up with all the posts just now so I just want to send warm wishes to everyone but particularly to all who are finding things difficult at the moment. January is a long and often dark month for people anyway but when there's health or emotional worries the month can feel even longer. So keep your chins up 😘
I'm feeling very tired and I still haven't decided exactly what I should be doing in terms of BMX but my new lump is still in benign stage and because I'm contemplating removal anyway the consultant said that they won't treat the right breast.
The other thing I learned at my appointment with breast surgeon is that my risk of cancer in the other breast is 50% and my idea that phrophylactic mastectomies would lower my risk of return/ new primary by 90% is wrong.
He told me that my overall survival rate will be same regardless of what I choose to do. Argh! I thought I'd made a clear decision that would reduce my risks but if I don't go for complete removal I will be followed up 'closely' and the new lump will be monitored. Then if/when signs of growth then I'd have option of lumpectomy for Rt breast.
Anyway, I'm waiting for date for joint consultation with plastic surgeon and breast surgeon so I have some time to mull it all over.
I will let all know how our Burns Supper goes next Saturday.
XXX
Maggie
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Hello everyone,
I was glad to see that the thread has been busy. I have been busy carrying out my duties as a volunteer director and am now busy trying to catch up with all the posts.
Gina, Rhonda, and all others going through chemotherapy, hang in there. That long journey does come to an end.
Kath, I do hope you are trying to relax as you wait for next Monday to begin your radiotherapy.
Chris, We have not heard from you in a while.Have you now begun radiotherapy?
Pam, How are things going with you? I hope you are healing nicely.
Maggie, Thank you for popping to keep us up-to-date. What is happening about the genetic testing?
Best wishes to all of you.
Sylvia xxx.
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Hello adagio,
I am looking back to your post of January 21st. I cannot remember reading about prostate cancer and BRCA. Can you remind where it was mentioned. I tend to take breast cancer and prostate cancer in tandem, as they are so very similar. The latest thing I heard on the radio was about testing men for prostate cancer through MRI scans which can detect them at an early stage and remove the necessity of biopsies, which can be very harmful.
It is very good news about your appointment with the oncologist and to know that she is pleased with your progress. It is also good that you are now at the stage of one visit a year. Keep up the good work.
I was not surprised that she suggested cutting back on wine consumption. All the news seems to be that drinking alcohol is a cancer risk.
I agree with you that we all need to try to keep up with a healthy lifestyle. The news today is all about chips, roast potatoes, toast, crisps and pizzas causing cancer. I do not think this is new news. It is about these things being overcooked, causing a carcinogenic substance (acrylamide) in the body that causes genes to mutate.
Sending you best wishes.
Sylvia xxxx
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Hello Hanieh,
I was sorry to read that your friend is having a recurrence and she will need a mastectomy. I can understand you feel down but you must be strong for your friend. She will have the mastectomy and whatever other treatment she needs and will then get back to her normal life. She is a young woman and this is very unfortunate for her but we have to bear in mind that cancer is likely to be more aggressive in younger people. You have to be optimistic that she will be fine.
I noticed that you said that your friend is not yet thirty and that she has no children. Not having children is a well known stated cancer risk. There are many risks that we are told are associated with cancer. I remember all that clearly from when I was diagnosed and filled in information sheets. Having your periods early, having your menopause late, not having children or having your children late in life, are all stated cancer risks. A risk does not necessarily mean that these caused you cancer. Remember, we are all different and our breast cancers are individual. It is best not to compare yourself to others.
You must try to support your friend and try to rid your mind of anxiety and get on to enjoy your life to the full.
From your post I can see that your friend had hormonal breast cancer on the first diagnosis, so that is completely different to your. Was she taking anti-hormonal meds such as tamoxifen to keep the hormones under control. What kind of breast cancer did she have? Was it the most common one, invasive ductal carcinoma (IDC) or one of the less common ones? What was her HER2 status? Was it HER2+ or HER2-? If it was HER2+, she would have needed Herceptin injections and a triple positive receptor status would have made it aggressive. Was she tested for the BRCA1 or 2 genes?
You are a strong young woman, Hanieh, so I know you will get over this.
I did read about the fire-fighters in Tehran and I can understand how upsetting that was.
Keep posting so that we can help.
Love.
Sylvia xxxx
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Hello Maggie,
I have just read your recent post again and I can understand your dilemma about what to do with your breast. It is a difficult decision but one that only you can make. You may just want to bide your time and keep an eye on the benign lump on the right breast. At the moment I would think that if this new lump is benign, it has not spread from the left breast, but I am not a doctor. I do not know how doctors know it, but they seem to know when a lump has spread from the original.
Take care. Make the decision yours and keep us informed.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I was glad to see that you are back in action on the thread. I do hope you have made a full recovery.
Take care.
Love.
Sylvia xxxx
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Hello Amanda, Lamis, Val, and 4everStrong,
I hope everything is fine with all of you.
Hello Marias,
I hope you are recovering well from that second chemotherapy. I did print off your links and read them with great interest. I even read the one in Spanish. The medical names sound the same so I got the gist of it. I did study Spanish many, many years ago!
Wishing everyone well. I am waiting for Spring and am fed up with January!
Best wishes.
Sylvia xxxx
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Hi Adagio,
So glad your husband is finally better, I am too, but my sinus drainage continues. It is chronic, I think. My primary doc suggested I have my allergies tested since that is probably what's going on. I have noticed that since chemo I am much more sensitive to smells, the incense burned in church is overwhelming at times, and I can't go in a candle store and others with strong smells. Probably all tied in with the neuropathy.
Congratulations on your "graduation" to annual MO visits! I understand how you feel, almost as if you are cut adrift, but you can always call with a concern. If your visits are like mine, not much happens there anyway, which is, I guess, a good thing!
I also understand your concern about mammogram; when I was at the Symposium of Naturopaths, MDs, Health experts in October, I heard quite a bit about thermography instead. They said it was superior to mastectomy and much safer. I was scheduled for my annual mammogram a few days after I got home, and I mentioned it to the technician who performed the procedure. She said in her opinion, thermography was unreliable and sketchy. I am pretty sure I knew more about it than she did, so I am still thinking about it. I would have to drive some extra distance to get it, and then would my doctor accept the results? I don't know. I will see my MO again in April, it will be another question for her.
I did have a lazy Sunday, had some big ideas early but it turned into a day of rest!
Talk to you soon, Mary
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Can Spring be far away?
Morning sunrise.
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Hello everyone,
Raymond photographed these early daffodils at our local garden centre and I thought I would post them to cheer us all up, as we struggle through January in our cold clime countries. It is extra cold in Exmouth and we had a heavy frost and heavy mist this morning. I am so impatient for Spring.
The other photograph is of early sunrise yesterday morning.
Here in the shops the shelves are filled with Valentine's cards and chocolates.
Wetherspoon's, a pub chain here, is advertising a Burn's nights supper for January 25th.
There is also a lot of food in the supermarkets for the Chinese New Year.
Wishing everyone a good week.
Fond thoughts.
Sylvia xxxx
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Hello, thanks for u words, maybe I can write to u in spanish, by the way, Im still feeling tired, sad, with out energy. I was criying the second day, but I beganing to feel better.
Today I more strong!!.
Have a nice day to u too.
Marias
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Hi Sylvia
You pictures are so cool. They transfer a feeling of relief to me. As I told you before, living in a big crowded city like Tehran, there is little chance for us to enjoy such beauties, though the city hall has tried to use each and every free space to do some gardening and make the scene of the city more beautiful by trees and flowers, they are not really eye catching for us since we are always in a rush.
My friend seems to be far better than me as she believes she is now much stronger to face cancer. We don't see each other but just send emails. Her cancer was IDC medullary like me but not triple negative. She had dipherline injections for one and a half years and has taken tomoxifen since the end of her treatment. She was also HER2-. Except these, I don't know any more about her details of pathology. But it's really heartbreaking for me as she was my rock during and after treatment.
I have a very nice co worker who has been suffering from MS for 17 years. Despite all her pains and sufferings, she is so inspiring that by just talking to her for five minutes, you realize how her coming to terms with her disease has led her to extra maturity and a deep enjoyment of her life to the extent that her neat and happy appearance makes her look at least 10 years younger than her real age. She told me one sentence and if I manage to stick to this one sentence, I may achieve some comfort. When she realised how depressed I was, she told me just live in the moment. Nobody knows what may happen in the future.
Sylvia, I know we are all different types. But I don't know why I have a feeling of empathy instead of sympathy. That's what bothers me a lot. Time may help me overcome this. But meanwhile I should try to regain my strength. Now it's ten thirty pm and after a busy day of hardworking at home and in class, I really need a deep sleep. I hope to manage to put my mind at peace by a good night sleep.
I'm again sorry if I express my anxieties here. I always mean to be some inspiration for those in treatment, yet now I m in need of some comfort.
Sylvia your kind words made me feel better.
Love
Hanieh
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Hi adagio
Congratulations on your health and wellbeing. My best wishes are sent to you for many many more years of health and happiness.
Love
Hanieh
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Hi gmmiph
Thank you so much for your lovely pictures. You are really a nice person with a good taste for everything. Excuse my English if I don't use my words properly. But this thread means a lot to me.
Love
Hanieh
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Sylvia - those daffodils bring some hope that Spring cannot be far away. In regards to my enjoyment of wine - I am generally very disciplined, it was just while we were away and visited so many beautiful wineries, that I indulged. I knew I would need to cut back, but hearing it from my oncologist was exactly what I needed. Keeping our food simple is definitely the healthiest option - I have been making wonderful soups chock full of vegetables with a barley and/or lentil base - so delicious.
Hanieh - so sorry to hear about your friend - that is so depressing and upsetting. I also tend to get anxious when I hear about other peoples metastasis and think it will happen to me - but like Sylvia said - we have to try and be strong and fill our minds with positive emotions - that is a lot easier said than done. Praying that your body will get the desired rest it so desperately needs so that you can do your job and be a wonderful mama to your precious daughter. Wishing only the very best for you - take great care of yourself.
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maryna - I notice that you are coming up to your 3 years since your diagnosis. How often do you see your oncologist?
Sorry to hear that you still have the chronic sinus drainage - that can quite annoying. Have you ever done a sinus flush? I haven't, but my daughter in law does them when she gets sinus problems (recommended by an ENT specialist) and she has said how much they help. It doesn't sound pleasant at all to me. The name of the product my DIL uses is NeilMed Sinus Rinse if you want to google it.
We are just in the process of trying to book a short vacation to Mexico - my husband feels the need to rest and recuperate, so we are trying to get into a very small B&B with a fabulous view and a nice pool. Hopefully it will work out for us.
I will be curious to hear what your MO says about thermography - I have read a lot about it, but have not really formulated a viewpoint yet. I will delay my mammogram by about 6 months and at least that cuts down somewhat on the number that I will have over the next few years. Unless I suddenly get the courage not to have them at all.
Wishing you a relaxing day whatever you may be doing. Mine is being spent at home since I have workmen here putting up scaffolding - we are having our chimneys rebuilt. A big job, but one of them is leaking into a bedroom closet - so I do not really have much choice.
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Hello Marias,
Thank you for your post. I was sorry to read that you are not feeling so good. Try to hang in there. Tiredness is the most common side effect of chemotherapy and you just need to rest as much as you can. You must also drink a lot of water to keep you well hydrated. Remember that if a person is dehydrated this will make them feel tired as well. Stay off the caffeine as it does dehydrate. Try to keep looking forward to the date when your chemotherapy journey will end.
Your emotions will be all over the place. When you feel sad try to do something that will lift your mood. A gentle walk, some quiet relaxing music or just try to sleep.
Are you working while on chemo?
I do not think I would be up to writing complicated letters in Spanish and we need to keep the posts in English so that everyone can participate.
Did you know that there are threads in Spanish on the forum for Spanish speakers? If you look under the title All Topics you will find them and if they are active you will find them under Active Topics. At the bottom of the page here you will find Comunidad en espanol. I do not know how to type the accent over the n.
You are very welcome to stay with us. It will do your English a lot of good with posts in English.
Very best wishes and take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hi, Hanieh,
Good to see you here, but so sorry you have such news to report about your friend. I do hope she will have good results and be able to get back to her life. I am sure your empathy and friendship will allow you to help her through her surgery and recovery. I find that helping others really lifts me out of myself and makes me feel better.
I read of the fire in Tehran that trapped and killed 35 firefighters, it's such a tragedy. We are all so fortunate that we have such people that risk their lives every day to try to save others.
Please don't worry about coming here for support, we all need support some of the time. At other times we are here to support others. Life is hills and valleys, not a straight road.
As for your empathetic nature, I don't think you can change it, but you can adapt to it somewhat. I have learned to not take serious or upsetting phone calls late in the evening if I can choose not to. Also not to get into difficult projects late evening with email etc. If I do these things, it will affect my sleep. I will roll over the problem in my mind through most of the night. I try to save these things for the light of day, if possible. Of course, sometimes it just doesn't work that way. We have to do the best we can to take care of ourselves. For me this means usually having some comedy or history on TV at night while still up and reading some "escape" fiction before going to sleep. Other than that, I have struggled with the "worry" problem all my life, and I don't think it does anyone any good. I do try not to let it consume me.
Sylvia's pictures are beautiful aren't they? Can't believe she has spring flowers already. Unlike our friend Sylvia, I am still wishing we could get a pretty snow here. We have only had one, and it was not enough to cover the brown grass. Most people around here think I am nuts, not many seem to like snow!
I shall talk to you later, dear Hanieh.
Mary
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Hi, Gina,
I only had one animal left, an old 21-year old cat, and she died a few months ago. I do miss her, but since I have been traveling I have not wanted to get another animal. Since I live alone, it would be a problem every time I go on a trip. If not for that, I would choose to have at least one pet.
I am part-owner in a family business since my husband's death. This does not demand daily input from me, but several times a year I have to sit in meetings about it. They are business meetings with rules and agendas, so it depends on the other people attending whether or not I feel free to put my feet up. Last week we had a new person to impress, so I sat like a good girl!
I have not always had problems with my feet,ankles etc. I have had problems since the chemotherapy left me with the gift of neuropathy.
I do hope your hand is better before your next treatment. I would think they will try a different spot. It's late in your treatment to put in a port, I don't think you have to worry about that.
I'll talk to you again soon, Gina. I'll bet you are a ray of sunshine when you go to the place where you get your chemo!
Mary
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Hi Adagio,
Yes, it is almost 3 years since my cancer diagnosis. Three years ago this week I was still walking around normally but I had a lump in my breast that had appeared very suddenly. My biopsy was Jan. 31 (a Friday!!) and on Feb. 3 I got the official diagnosis. That was a long weekend to sit through, although I was pretty sure of what I was going to hear.
I do have some saline rinse for my sinus drainage, I find it helpful when my nose is clogged; but often the problem is that they are not clogged, but just constantly running down my throat. The only thing that might stop it are heavy-duty antihistamines, which I don't like. They have side effects of their own. But I do feel much better overall. The bug that I, and your husband, had was so energy-zapping!
What fun to be booking another trip! This one sounds like much less work and planning for you than the Australia trip! Hope it works out and you have a relaxing time.
I don't have high hopes for my MO's reaction to my thermography question. She is pretty much by-the-book, and mammogram is the "standard of care." But I will ask nevertheless. I'm sure I'm not the only one who will be asking these questions.
I spent Sunday absolutely vegetating, I guess I needed it. Plus it was a chilly, rainy day and I had no desire to go out again after I got home from church.
Good luck with your house repairs, always a stressful time but sometimes we just have to do it!
And I notice this year will be your 5-yr cancerversary! We will have to have a party here!
Talk to you again soon! Mary
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Hi, Sylvia,
I am back, feeling much better. I was telling Hanieh that I am wishing for some pretty snow, while you are wishing for early spring! Maybe since we live so far apart, we can both get our wish.
I'm afraid things have been so busy that I have still not got through Chris Woollams' latest post. I still have hopes of doing so!
Thanks for posting the pictures, can't believe Raymond found the flowers blooming already. I think you will get your wish.
I'll talk to you again soon, love, Mary
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