Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Val,
I am so glad you have your trips to look forward to! I want to go on an Alaskan cruise too, one of these days. And I am glad your DH is pushing you back to Europe. You can pace yourself, that is what I planned on doing; that's one of the reasons I was glad to only go with my sis-in-law, and not a big group. I figured I could go at my own pace. As it turned out, the cortisone shot in my knee seemed to kick in about the second day we were gone, and I was able to keep up quite well. The walking in the big cities is not all that brisk anyway, but I could even do brisk walking after a couple of days. And all those steps! We did notice that some of the places have elevators now. I was really nervous about my physical state for the trip, but I have a new sense of well-being after the trip; knowing that I can do it, maybe not as I did 20 years ago, but much better than I thought.
We were very impressed with Oceania line. Everything was top-notch, the main complaint I heard was about the wi-fi on the ship; it wasn't very good, but I didn't miss it much. We stayed very busy and it was okay. But the food was excellent, the staff so professional, helpful and friendly. Everything was spotless at all times, everything we asked for was in front of us in no time, our small group tours in the ports were handled very well by local guides. We never felt threatened in any way. We felt totally spoiled, and it was just wonderful. Kind of a shock to get back to reality!
I posted above about my DIL's situation, it's ongoing, no treatment plan yet. She thinks things are not going fast enough yet, but she just got her diagnosis of BC on May 22nd; I told her things really are moving quickly for her. I do remember that feeling though, when you just want to get started and feel like you are doing something!
Happy trails, and we were told that September is the perfect time to go to Italy; weather wise and less tourists! Although early May was nice too.
Talk soon, Love, Mary
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Hi,Sylvia,
I wanted to tell you I also just discovered the Kombucha drink, slightly effervescent and a taste that's hard to describe as you said. A lady working in the market where I was shopping steered me to it, and she wanted to take a pic of my grocery cart! She said it was a very healthy grocery cart.
Just read a headline that said British Airways shut down Heathrow and Gatwick till this evening. We traveled on British Airways out of London, fortunately had nothing like that happen to us.
Hope you have a peaceful weekend and get some reading done!
Talk soon, love, Mary
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Hello Everyone,
I have been taking Sylvia and my MO's advice to take things out of my schedule as much as possible. It's definitely a struggle, because though my husband is willing to pick up the slack, there are always more things that I want to get done. It's true that laundry, shopping, and cooking are all a form of "exercise." So I'm doing the walks that seem to give me energy, and not doing it when them when they might wear me out.
I made a point to stay home this weekend to rest. A year ago my diagnosis was just confirmed, and we did the same, except for walks. It has been a big experience, and there is still so much to process. I'll see my MO on Fri for my second follow up, and to have him look at my left side scar for bumps that I assume and hope are scar tissue. The radiated right side scar is completely smooth, and looks very nice.
Mary, I really enjoyed your pictures. It's so important to get out and see other places and ways of living. If all goes well, we'll be traveling again this Summer and Fall. I really miss it.
I'm looking forward to getting back to the giant "Swanson on Swanson" autobiography that a friend loaned me. She was an incredibly strong-minded woman who lived during a fascinating time.
I hope everyone has a nice, relaxing day.
Pam
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HI, Pam
Good to hear from you, and it looks like you are learning to pace yourself. It's a hard lesson to learn, I know. I would feel good one day, and then overdo, and then spend the next day doing nothing because I had worn myself out! Very frustrating, and Sylvia would counsel me too, and tell me to rest more. And you're right, exercising was hard, and I didn't do much if I knew I had a task to do that day, because my energy would be spent. The good news is....it will get better!
I also hope your bumps are scar tissue, it's very probable. But you will feel better when you know for sure, and perhaps your MO will know right away.
I certainly did enjoy my trip, I ran into sis-in-law today and we are thinking of planning another one soon. It's just hard to get back into routine, next time I will take more pics. She took a lot more than I did, she got hard copies of the ones on her camera, and a lot on her phone. I could post a few more, didn't want to overload things! I hope you go somewhere in the summer and fall, we know all too well that life is unpredictable and we must make hay while the sun shines, as the farmers say around here.
The book of Gloria Swanson you are reading sounds very interesting, I don't think I knew she had done one. She must have a lot of fascinating stories about the movie biz. Sounds good, let me know, I am always on the lookout for a good read. I am still reading my copy of "Andy Warhol was a Hoarder". I started it on the ship, and it is not a heavy, long book, and I'm still not finished. I read a little when I go to bed and I think I have been dropping off so fast I don't get through much. On vacation I was too interested in what was going on to do much reading, though I did finish one light book.
Glad you checked in, hope you have a good visit on Friday and it's only minor stuff!
Later, Pam
Love, Mary
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Hello Mary,
Thank you for your post of May 27th. I was interested to know that you have also discovered the kombucha drink. The one I am buying is Karma Kombucha and it is very, very low in sugar. There is just enough to enable the fermentation. Some of the drinks are quite high in sugar so we have to be vigilant. I think reading labels is just as important in natural food stores as in the supermarkets. I buy very little where label reading is necessary, as I avoid convenience and processed foods as much as possible.
As for Heathrow and Gatwick, I think it has all been a disgrace. It is always the same story in this country. At the airports it was all to do with using very old computer equipment. The whole emphasis is how much profit can we make and how little upgrading and modernising can we do? This attitude will be the death of this country. It was the same with the NHS and the ransomware scam recently.
I have tried to have a few days of peace and quiet because I have been so busy in my role as a volunteer director here in the apartment complex.
I am just waiting for the General Election to be over on June 8th. It is getting very nasty and the right wing press here, which dominates, is out to get Jeremy Corbyn when he is the most decent politician we have had in a long while. Decency does not get you anywhere here. I just hope that Theresa May does not get a majority. She is weak and flaky and I think she will betray us on Brexit.
That is all for now.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I am just going to have a break and post later.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
It is always nice to hear from you and I am glad to know that you are trying to cut back a bit where you can. Just keep remembering that your whole system has been upset through toxic drugs and it takes a long time to recover.
Please let us know how you get on when you see your oncologist on Friday and I do hope that you get good news from that check up.
Reading that relaxes you is a good way to help your immune system strengthen. Any kind of relaxation is good. Any kind of negative stress is bad. It sounds as though you are enjoying your book.
Wishing you all the very best.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I do hope all of you are well and happy. The thread is very quiet at the moment but we all need to relax and enjoy ourselves.
Best wishes to Mary, adagio, Rhonda, Pam, Val, Kathesward, Lou and Amanda. Thank you for your contribution to the thread.
Hello to Hanieh, we are missing you on the thread.
To Flo and Kathy in the UK, we do not hear from you any more, so I hope no news is good news.
Best wishes to everyone posting and viewing.
Sylvia xxxx
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Hello Everyone,
My MO says that he thinks my bumps are scar tissue. I won't see him again for 3 months, if all goes well. We had a nice talk about anxiety. I call him my philosopher/oncologist, because as you can imagine, he lives a heightened existence, filled with frightening diagnoses and conversations about death. I'll digest what he told me and share soon.
Mary, thanks so much. I know it will get better, but it's so comforting to hear. About your pictures, I certainly don't mind seeing more. I'm happy to live vicariously through the travel of others for the moment. I really want to get back out there myself. I feel like I've been waiting for a year to do something fun, but I did have fun, even through my chemo - modified fun, anyway.
Gloria Swanson was absolutely fierce. She was a friend of Charlie Chaplin, Rudolph Valentino, a producer, an actress, a star who didn't put value in being a star, a pioneering business woman, and so much more. I'll try to do her justice in another post.
Sylvia, I am doing everything that I can to get more relaxation in my life. I believe that's a very big part of my recovery, and definitely good for my immune system. Doing less has always been a challenge for me. It's a good thing that certain kinds of reading are such an escape.
I've had the privilege of helping other people in my life who have cancer. One has just started chemo, so I can tell her what to expect. It really feels good to be able to offer something to the rest of us who are going through this.
Cheers,
Pam
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Lilyp6, i'm glad you and your doctor were able to sort out your lumps. As time goes by the anxiety believe it or not gets better. I still have some moments, but as I try to get back to a steady routine of helping others, doing nice things for myself etc, it seems I can keep the panic thoughts at bay. I sometimes can't believe i am 18 months out from dx.
I've been gardening, planting new plants, refilling my herb garden etc. Just enjoying each day for its own. I am now working hard to not let the anxiety of tomorrow steal the strength of today.
Mary, my hubby has booked our Alaska cruise for next year. I told him about Oceania cruises and he will more than likely book us on one of the European ones. We are going to St Maarten in August (i know hot and hurricane season) for 2 weeks. We have a partial ownership in a condo, that we've not used in a couple of years. DD3 and her hubby and son are coming with us. Hooray.
My aches come and go with my knee. The cortisone shot really worked this time.
Sylvia I am keeping watch on the politics in Britain and Europe. Really disappointed that the president does not think things are going downhill with climate change. Sometimes watching and reading all the media things, is too much from both sides. So I go garden. (smile)
Gentle hugs to all our friends on this thread. I hope they are doing well.
Val
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Hi, Pam
I am so glad your doc is not concerned about what he thinks is scar tissue. As for us, I think we are well served by keeping an eye on things. Sometimes we feel silly when our fears are unfounded, but that's okay. It's also nice that your doc spends enough time with you to really chat, usually they are in and out so quickly.
It's good you have some tentative travel plans for summer and fall, I think that's the best thing for feeling better, is just to feel normal and enjoy some different scenery. That is, when you feel up to it. It sounds like you are feeling much better and I think you will enjoy your summer travel plans. Building back our immune systems does take time, when I started chemo I thought when I finished I would be back to business as usual. Not even close!
I can't say I know a lot about Gloria Swanson, but I have a lot of respect for a woman like her who did things her way without whining about men holding her back. You have piqued my interest.
My DIL has now found that she has lumps in both breasts, they know for sure lumps in rt. breast are E+P+H-. They haven't got back the results on the other breast yet, but they think it is the same. They say it is Stage 1. She had a PET scan which showed no activity in lymph nodes, but they will take a few out during surgery and check them. She is planning on a double mastectomy with reconstruction, and she will possibly not need chemo and no radiation, if lymph nodes are clear. She will go on 10 years of a hormone-blocking oral drug. They told her it's curable. I don't think I ever heard that word, but I didn't mention that to her. I did hear the word "treatable" when I was diagnosed.
I was idly thinking about being told 1 in 7 women have BC. In my family, my DIL, my SIL, and myself have had it. None of us related by blood. So does that mean we will provide cover for 21 other women?
Talk to you soon, Pam
Love Mary
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Hi, Sylvia,
I hope you are still reading and resting, although I have to say I am beginning to feel a bit concerned by your absence. I have been coming here for over 3 years, and I haven't seen you gone this long before. I do hope everything is okay. You are missed!
Talk to you soon, I hope,
Love, Mary
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I agree Mary. I"ve been faithfully following this thread for 18 months and have not seen Sylvia absent this long. It has always been a source of comfort that she answers each adn every post. Here is hoping she is resting and enjoying life.
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Happy Sunday Everyone,
Valstim, One of the things my MO mentioned was that anxiety gets better with time. He also gave the analogy of having a really nice car, and sort of wasting it by being afraid to drive it. I agree that our energy is best used elsewhere. We all have something in our lives that functions the way that gardening does for you, and that's where the energy should go. And I know that helping others is even better for us. I'm glad that you've been able to keep panic at bay most of the time. I think I mostly do that as well.
I have always marveled at Sylvia's attentiveness to this board, too. And I hope that she's just taking a well-deserved break with her gardening, or with something else she enjoys.
Mary, It is so true that I expected to snap right back to normal after chemo - even if I knew better. And I really do appreciate my MO for his probably unconventional style.
Gloria Swanson was really ahead of her time, in my opinion. I didn't know much about her before either, having been more interested in Joan Crawford and Norma Shearer, and the mostly post-silent film stars. She was definitely not a whiner, and seemed to be a stronger character than any of her partners so far. Her book is very matter-of-fact, and apparently it was a best seller in 1980.
I'm sorry that your DIL is one of us now, but it is encouraging that they don't think that lymph nodes are involved. I hope that she is able to skip the chemo and radiation as well. She's lucky that she has you to turn to for support. I think about "providing cover" for that breast cancer statistic too.
I'm off to a cancer survivor celebration at my facility today. Let's hope it's not too hot.
Love, Pam
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HI, Val,
I am so glad you and DH are making a lot of travel plans! My SIL and I have started making plans to return to Italy in the fall. Such fun! Alaska sounds great too, I definitely want to do that as well.
We had a community meal after church today and a couple of people asked about my recent trip and if we were ever afraid. We really were not, our minds were on the sights we were seeing. In Rome there were heavily-armed, grim-looking soldiers stationed at every major tourist site, we quickly got used to seeing them. I think it is wise to be on one's guard, maybe next time we will be.. The terrorist chooses to attack us when we are not on guard, and are enjoying living life. They are anti-life, and vicious and cowardly; Londoners have been struck again as they were out enjoying their city this weekend.
I wanted to tell you of the latest ways I have been trying to hurt myself! Thursday a large bottle of water fell out of the fridge, landed on top of my foot. No lasting damage, but first day I wasn't sure; it's still bruised and tender. Then I decided to do some more extensive weed-eating last week; Friday when I woke up I couldn't move my rt. arm without excruciating pain. I guess I aggravated my rotator cuff and my torn bicep, so I called the orthopedic doc's office. They weren't in so she will be calling tomorrow; I am going to have to take the plunge and have the surgery, I suppose. It is some better today and I can use it again, gently. I guess I had fooled myself into thinking it was really better, the truth is I don't use it much and rely mostly on my left arm. I'm hoping that it will recover enough so I can wait till October, now is too busy a time to be in a sling. If it doesn't get better, I will have to have surgery now.
Talk again soon, Love,
Mary
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hi everyone
Hope everyone is well? Having a really bad day today. That awful feeling is back in the bit of my stomach and I can't shift it. Back and hip aches that have always been there are really scaring me today and I can't work out why! Hate this feelin
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Hello Pam, Val, Mary and Kath.
I have just been reading all of your posts and I shall settle down later today and answer every one of them. I am fine but there have been problems with the computer with Windows 10 and Raymond and I have not been able to get on the internet. He is trying to sort it out. Meanwhile he is using Linux Ubuntu about which I know nothing.
I have also been fully occupied with my duties as a director. We have had our usual Health and Safety inspection, our Fire Risk assessment, as well as an Electrical Safety inspection. It is all very time consuming. It should calm down soon.
I was very touched by your kind words of concern and that you missed me on the thread.
Love to all of you and I shall talk soon.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I was glad to read that your oncologist thinks your bumps are scar tissue, so I hope you will now have a worry-free three months as you go through June, July and August. I was interested to know that you are able to talk to him about anxiety, as it is something all of us have to learn to live with after a cancer diagnosis and treatment. I have often wondered what goes on in the minds of the medical teams that look after us. I shall be most interested in a future post about what your oncologist said to you about anxiety.
I do agree with you about what you said to Mary about how we enjoy photographs on the thread, especially those from all the different countries that some of the group members are visiting. I am sure it will not be long before you can go travelling as well. In the meantime tell us all about California.
I have been following what you have been saying about your book on Gloria Swanson. How long exactly is this book?
I am sure that you are doing everything you can to get more relaxation in your life. It is very difficult to slow down when we have a lot of energy.
It is good that you are helping others in your life who have cancer and I feel that doing such things is of mutual benefit.
I cannot believe the number of people that are being diagnosed with cancer, especially breast and prostate and they seem to be getting younger and younger. Something is very wrong. This is not normal.
Keep well and enjoy the summer months.
Fond thoughts.
Sylvia xxxx
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Hello Val,
Thank you for your post. You are right, we keep panic thoughts at bay by trying to take ourselves calmly through each day.
It sounds as though you are really enjoying yourself with your gardening. I have always found gardening therapeutic. I have been planting some summer plants in the beds of the grounds here, especially begonias and geraniums. Every year a little robin appears by my side and chirps away while I am working. He follows me around the grounds. He was a bit late coming this year and then suddenly he appeared a few days ago.
You can look forward to your trip to St. Maarten in August. I am not sure where that is.
It is good that the cortisone shot for your painful knee really worked. I have a friend of 89 who is in a lot of pain after having shingles at the end of September last year. She then had a fall at the end of December and broke her wrist and the main bone in her arm. For some months she has been suffering with pain in the shoulder. It transpires that she damaged her rotator cuff last December when she fell. It has taken all this time to get a diagnosis. She has been told she is too old for surgery, so I think she will probably be offered a cortisone injection. I do not know whether this will help because with the rotator cuff damage it seems to be a torn tendon.
With all that is going on in the UK I think the whole population must be fatigued. There was another terrorist attack in London on Saturday night about 10pm. Again it was van going over London Bridge and just running people over. Apparently three men were in the van and they jumped out and ran into Borough Market, stabbing people as they went. The bridge and the market are very busy places with lots of night life going on. The police shot dead the three terrorists but not before they had killed seven people and injured over forty. I cannot believe what is happening in this country, but I think the authorities and politicians are too soft and lax. We are not safe anywhere now and this has all come about because of what is happening and has happened in the Middle East. We should concentrate on our own country and looking after our own people. We keep being told that we are the fifth richest country in the world and yet we have over a million children living in poverty and people living on the streets. I do not know how all this is going to end. I shall be glad to have the General Election behind us, but I do not think it will change anything for ordinary people.
That is about all for now. Have you been writing anything lately?
Take care. Fond thoughts.
Sylvia xxxx
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Hello Mary,
I read what you said to Pam about your daughter-in-law. I was sorry to read that she has lumps in both breasts. It looks as though she has hormonal breast cancer, without the dreaded HER2+. It is good that she has no lymph nodes affected. She will have a much shorter and hopefully easier cancer journey without having chemotherapy and radiotherapy.
I was wondering how old your daughter-in-law is. Here, women are usually given tamoxifen if they are pre-menopausal. This used to be for five years but I think it has been increased to ten. Post-menopausal women usually have aromatase inhibitors, such as Arimidex and again I think it has gone from five years to ten. Some women have tamoxifen for some time and then continue with Arimidex or other aromatase inhibitors.
I have read in the past that if a woman stays on tamoxifen for a long time, she can develop triple negative breast cancer.
I am really concerned about the number of women being diagnosed with breast cancer and the number of men being diagnosed with prostate cancer. It is just not normal.
That is about all for now. I am going to have a break and a cup of tea, green of course!!!
Talk soon.
Love.
Sylvia xxxx
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Hello Mary again,
Thank you for your post of June 4th. I have not managed to do a great deal of reading or resting but I have managed to get everything up to date in the apartment complex. Thank you for your concern. I can promise you that, if anything were wrong with me, I would let you know. The problems with the computer has been a nightmare. It just righted itself this morning, having gone wrong after an update on Friday morning. The bad news is that Windows 10 is having a major update soon and I am wondering what will happen! Thank goodness Raymond will be on to it and try to come to the rescue.
Thank you so much for your concern.
It is a really miserable day here in Exmouth and we have had pouring rain all day and very strong winds. We needed the rain but it comes all at once and then we go for weeks without a drop of rain.
You will know that we had another terrorist attack on Saturday night in a very busy part of London. Once again, the police are saying that they knew the identity of the three men who drove a van into people walking on London Bridge and then jumped out stabbing people in Borough Market. It must have been horrific. Why were these men not locked up for the safety of everyone else? We need to get tough. We also need to stop bombing the Middle East to bits. It serves no purpose. We have the enemy walking around in our midst. I have no idea who is going to win the General Election, but I do hope that the people here will have the good sense not to give Theresa May a majority. As for Br
exit, I do wonder where we are going.
I briefly read through the TNs thread earlier on and I am so concerned about the number of people being diagnosed with breast cancer. What do you think is going on? I do not post too much on TNs because I find the number of people too overwhelming. With our small group I feel that I get to know you all better.
I have just printed off the latest newsletter from Chris Woollams dated June 4th. It seems like an interesting one because he is setting out to answer some of the questions that he gets asked on Cancer Active, the Rainbow Diet or Chris Woollams Healthwatch. Do you look at the Healthwatch much?
The questions sound interesting but I have yet to click on the headings to get the answers. The questions are:
1. How does Hemp oil differ from cannabis?
2. Does Bentonite Clay really detox you?
3. This is about his personal prescriptions. I was wondering whether anyone on the thread has done one of these with him?
4. Is there any compound that actually works against TNBC?
5. Is there any research that diet and exercise can increase survival times?
6. Is my diet causing my depression?
7. The Rainbow diet?
8. Natural supplements?
9. Would it be a good idea to do a fast?
10. Can natural compound succeeed where drugs fail?
Have you read any of this yet, Mary?
I do wonder about saying that people are cured. Some people seem to have their cancer coming back after 25 years and it is said to be all to do with cancer stem cells staying dormant in the body and then suddenly coming to life. I have fifteen days to go to mark twelve years since diagnosis. Would I go through treatment again? I sometimes ask myself this. I tend to think I would once again try alternative treatments first of all.
That is about all.
Thinking of you.
Sylvia xxxx
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Hello Pam,
I was very interested in what you said about the analogy your oncologist gave about having a nice car and being afraid to drive it. You are right that we are better off using our energy in a more positive wave. We should do what makes us happy and I find that helping others brings a lot of happiness.
I have been busy catching up on my duties here and doing a few things in the apartment. I do like everything neat and tidy and very minimalistic. I like a décor in our apartment that makes me feel peaceful and quiet. I cannot stand clutter and I think that a lot of people become slaves to their possessions. I like all sorts of music but lately it has been Simon and Garfunkel music that I have been humming to myself, especially the Sound of Silence and a Bridge Over Troubled Water. I think it helps to switch my mind off from three terrorist attacks in three months. Where are we going?
I do hope you have a good time at your cancer survivor celebration.
Sending you fond thoughts.
Sylvia xxxx
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Hello Kath,
Thank you for your post. I was sorry to read that you are having a really bad day. What do you feel has brought this on? Do you think it is a kind of anti-climax after all the excitement and preparation for your daughter's wedding? It sounds as though you are having a panic attack. Is there anyone with whom you can talk to relieve your mind of anxiety? Acupuncture is supposed to be good, as is reflexology and massage. You need to join a group where you can have good conversation and also a laugh. You may want to have a look at number 6 on Chris Woollams latest email. Is my diet causing my depression? One diet, and two ingredients in particular, has been shown to reduce depression, stress and anxiety. Click on How to eat for less anxiety and depression.
Keep in touch and come here more often so that you can talk to us and get things off your mind.
Sending you fond thoughts.
Sylvia xxxx
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Hello everyone,
Have you any suggestions for Kath?
Rhonda, I was wondering how you are getting on as I know you are still going through treatments.
Adagio, how is life treating you back in Canada?
Lou, what is going on with your life?
Amanda, I am missing you on the thread. What do you think of what is happening in the UK?
Hanieh, it is such a long time since we heard from you. Is everything alright? I heard on the radio that Ramadan is now underway and that it will end on June 28th.
Kathy and Flo, fellow Brits, have you decided to leave us?
Best wishes to all.
Sylvia xxxx
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Hi Sylvia,
I am glad to see your posts and was checking quite often for your return. I am still doing radiation and the injection every three weeks of Herceptin and Perjeta for the Her 2 positive part of my tumor. Lucky me-I get the two most aggressive types. Before I started radiation my oncologist felt some lumps below the mastectomy scar so they biopsied the area and found it did contain cancer cells. The radiation oncologist is making sure he targets them. This was quick since my surgery was March 22nd. I am thinking maybe they didn't get good enough margins-I dont know. It threw me for a loop. My medical oncologist wanted to do another pet scan but I said not now. I just had one the end of February(that makes 2) and I am being radiated now. She said that after radiation I will start the Xeloda which is a pill form of chemo for triple negative. Xeloda only was used in Stage 4 but now they are using it to help prevent recurrence. I dont know if what I have is now considered Stage 4 or a local recurrence. I am really trying not to think too much about it and just get through radiation. Besides all of this I feel really good. My youngest son is graduating high school in a few weeks and I try and see my daughter and grandchildren as much as possible.
Love to all,
Rhonda
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Hi, Sylvia,
I wanted to quickly jump on and tell you about my experience with Windows 10. I have a tablet, and a cell phone, but I still like my PC and I use Windows 7 on it. Last year I kept getting messages from Windows about a free upgrade to Windows 10. After months of this I allowed Windows 10 to be installed, and was very sorry that I did. I had nothing but trouble with it, and finally took it to the local computer expert and they removed it all from my PC and re-installed my Windows 7. It was like having an old friend back!
I will write more later, good to see you again,
Mary
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HI, Rhonda,
I think I missed your last post to me, you said you liked my pics. We had a wonderful time, I will look and see if there are any other pics that I like. I did not take enough, I was too busy looking at the sights! My SIL took many, but she has not sent me any yet. She had her camera pics developed into prints, and has 370 of them! I went through them all, and we had a lot of laughs.
I was reading over your latest post and saw that you are being given Herceptin and Perjeta, and that the MO found some more lumps below your scar. That sounds to me like a local recurrence. When did they find that the Her2+ was enough of an issue to begin treating it? I know that the HER2 treatment regime is a long one, but I hear it is a successful treatment, so that is a good thing that they have drugs to give you for it. I have also heard that Xeloda is being given more widely than before, as a maintenance drug often, and often only short-term. It looks like you are going to become experienced in all this, and will have to keep us up on things. Glad you are finding so much pleasure with your family!
I will dig around for more good pics!
Talk to you later, Love,
Mary
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this is Sicily; we were on a tour that took us to areas where scenes of "The Godfather" were filmed. The church at the top was one of these sites, we walked up the hill to it.0 -
Hello Rhonda,
Thank you for your post. It is always nice to hear from you. I find it very touching to be missed.
Are you suffering any side effects from the radiotherapy? A lot of patients get very fatigued just like they do on chemotherapy. What about side effects from Herceptin? What about side effects from Perjeta? It is very strange how there can be such a mixture of receptors within a tumour.
I was interested to read that your oncologist felt some lumps below the mastectomy scar just before you started radiotherapy and that they were biopsied and cancer cells were found in that area. I hope the radiotherapy gets rid of these cancer cells, because the idea of radiotherapy is to mop up any stray cancer cells. Concentrate on getting through your radiotherapy and then see what needs sorting out.
How do you feel about taking Xeloda in pill form as a chemotherapy drug? Have you been told about any side effects? I can understand your reluctance about a PET scan. These scans are used so often now, as well as CT scans, and I am concerned about all the radiation to which patients are being exposed.
Keep in close touch with us and ask anything you like. You are being exposed to a lot of drugs. I think once the powers that be find a drug they will use it as much as they can. It all makes money.
I do not know much about Xeloda but it is a drug whose name is cropping up a lot these days. A drug is brought in for one purpose and then used for another. Take tamoxifen for example.
My understanding of stage 4 breast cancer is where the tumour has spread from the original site, that is the breast, to other parts of the body, such as liver, lungs, bone and brain. I am not a doctor but your case sounds like local recurrence, but this is something that your oncologist should be asked.
You are quite right to concentrate on getting through your radiotherapy. How many more sessions do you have?
Enjoy your youngest son's graduation and spend as much time as possible with your daughter and grandchildren.
Keep looking forward with optimism.
Love.
Sylvia xxxx
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this is Sicily; we were on a tour that took us to areas where scenes of "The Godfather" were filmed. The church at the top was one of these sites, we walked up the hill to it.0
