Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
You're absolutely right about our being lucky not to have been going through cancer treatment in more recent years. Breast cancer is much easier to diagnose than many other cancers, I wonder what's happening with the more complex, less common cancers? I've never regretted paying privately for my surgery as mastectomies are simple and inexpensive compared to the surgeries needed for say, abdominal cancers. I don't think the Government is even attempting to solve the waiting list crisis and forty new hospitals was never going to happen.
I have no idea why the Prime Minister keeps getting away with his lies and the corruption within Government. There's so much evidence. I'm fairly sure that if I'd committed crimes on this scale, I would have been put behind bars for a very long time. Apparently the letters of no confidence are now flowing into the 1922 Committee's inbox with greater regularity, we can only hope that Johnson's days are numbered and that the new Prime Minister sacks this entire cabinet of dishonest, shallow hangers-on. Parliament shouldn't be on a break during a crisis, I wish Mr Speaker had questioned this - Bercow would have put his foot down.
I wasn't surprised that Johnson changed the ministerial code. He's changed every law that might have forced him and his ministers to take responsibility for anything at all. Why haven't the Met Police investigated the illegal party in his flat? Why was Sue Gray told to leave it out of her report? The Good Law Project are dealing with it, the texts sent by Carrie Johnson, inviting people to the party have been leaked. How fragile democracy is.
The weather has been miserable and cold here for the last few days. I wouldn't be out and about in any case as the small benign lump on my upper left back has now turned into a 4cm abscess. Very painful to lean back when sitting and sleeping is increasingly difficult. Emailed my GP yesterday and sent a photo. Ideally I ought to have been offered a face-to-face appointment, but I did receive a fairly prompt telephone response and have been prescribed an antibiotic, Clarithromycin 500mg. It's causing nausea, but otherwise ok. This could have been prevented had my GP been allowed to drain it in the first instance. I have no idea why this service was stopped as it was quick, efficient and helped with hospital waiting lists.
Hope your fellow residents are behaving. It's so frustrating when people expect others to sort out a trivial problem for them when they could easily have solved it themselves.
My very best wishes.
Love,
Gill xxx
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Hello Sue,
I was sorry to read that you had a rough week last week but that you are now feeling a bit better. Remember that the side effects of chemotherapy tend to build up as the weeks go by. Patients tend to feel worse because you are not as strong as when you first began the treatment. It will take time and patience to get back to feeling more yourself. Remember you still have surgery and radiotherapy to go through. These two may seem a lot easier but they still have an effect on you. You are nearly at the end of the longest part of treatment. Eat what you can, keep well hydrated and keep looking forward.
Do you think that the newer chemotherapy drugs that patients are on are worse for side effects than the older ones?
Iron supplements are well known for causing constipation. It might be easier to get some packets of good quality prunes. They have been part of my everyday nutrition for very many years, along with a high fibre diet. The best prunes are the ones described as 'large prunes no soak'. These ones do have the stone in but there are others that are pitted.
It is difficult to compare the two medical systems because they are so different. In the UK, it is state sponsored and paid for out of taxes. In the US it is private and sponsored through insurance. My own experience with my breast cancer journey had no complications or anything unusual, so the only time I was in hospital was for a mastectomy. At that time, nearly seventeen years ago, it was standard to stay in hospital for five days, you did not leave until all the drains were clear and removed. I know that now patients seem to go in for surgery, come out the next day with the drains in and have the District nurse in to deal with the drains. I do remember my breast cancer surgeon telling me at the time of my surgery that breast cancer was not considered major surgery and that it would take about forty-five minutes and that I would then be taken to the recovery ward until I woke up from the anaesthetic. I had no pain at all after my surgery and felt fine.
I would be very interested to know what the nutritionist at the hospital advised you to eat while you were there. I do not approve at all of some of the food that the NHS thinks a patient should eat.
Keep looking forward to the end of your chemotherapy, but do not push yourself too much to get back to normal. Give yourself all the time that your body needs. I can understand how you want to get back to work but it will take time. Teaching is a demanding job and you will need to get all your strength back. I am a retired High School teacher so I know how demanding it is.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Thanks, Gill!
I'm having a group of fairly good days! I'm so grateful for them! I can eat a bit more and I don't feel so ill. But my balance and equilibrium are rather unstable. I walk around my house--both inside and out, and just make sure that I have something close by to hold on to.
The doctor asked me to come in last week, but I couldn't make it, I was so ill. I'm trying to get an appointment this week, before my infusion next week. I also was able to re-schedule my appointment with the surgeon this week. I want to hear her plan. Hopefully, it will help keep my spirits up during these last few infusions.
When I first felt the lump in my breast, I could really feel it. During the first round of chemo, it felt smaller to me, though I was afraid to say that out loud. The ultrasound in April confirmed that the lump had shrunk. Now, I don't feel the lump in the space that it was. I have said that out loud! I'm hopeful that all of this struggle is worth it.
Love, Sue
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Hello Sylvia,
These last few days, as I've been feeling better, I've been able to eat. And I've been eating to keep my strength up. It's so hard to stay hydrated. I've tried adding flavoring and fruit to my water. I've tried cold water and warm water--though cold works the best. I suck on crushed ice. When I was not feeling well last week, my husband got me Pedialyte (which I gave to my kids when they were small). I drink as much as I can.
It's hard to say if the chemo drugs are more difficult now than they were years ago. The Doxorubicin, which is the ruby-colored drug that they inject straight into my port, is the one that freaks me out the most. It doesn't go in with the saline as the others do. And it makes my urine red/orange for a day or two, depending on the amount of water I drink.
Also, the nurses get all suited up in double gloves and protective covers when they handle the chemicals. I know that it's for their protection. But that stuff goes into my body!
I'm not sure if the side effects are worse now. I get an infusion prior to my chemo infusion each week that has drugs designed to combat the side effects. That pre-infusion has seemed to work. I don't often feel very nauseous or too terrible after the infusion. But then again, everyone is different; so it's hard to tell.
The nutritionist talked to me and my husband about what to eat, especially during the second round of chemo. She told my husband to feed me whatever I wanted (within reason) to help get food in my body. She suggested Boost or Ensure. But unfortunately, I'm not a fan of either one. The texture of those supplements is distasteful to me. (A friend of ours suggested Pedialyte and water.) The nutritionist also had the kitchen send protein-enriched gelatin and a protein shake with all of my meals. The gelatin tasted awful. The protein shakes were good, but they gave me diarrhea combined with all of the antibiotics they were giving me in the hospital.
I am looking ahead to the end of my chemo. Next week, I'll be 3/4 of the way through! Tomorrow, I'm meeting with the surgeon to discuss the plan for surgery.
I've missed teaching so much. I am yearning to get back. But I realize that I've got to give my body time to recover. I am grateful for my insurance. But I'm also very thankful that I've been able to accumulate sick days throughout my career. They have allowed me to take this time off so that I am not experiencing financial difficulties right now. But despite all of that, I miss the kids. I miss the teaching. I've promised myself to be patient.
Thanks so much Sylvia!
Love, Sue
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Hello to all,
Sue, I am also glad you sound much more optimistic, and the end of chemo is in sight! Speaking of the end of chemo, here's a horror story for you, it happened to me because I usually have to do things the hard way. After I was hospitalized following my 1st chemo infusion, my Oncologist changed my drug dosage slightly, and also switched the way I was getting the drugs, from all 3 (Adriamyacin, Cytoxan and Taxotere)together, to doing 2 drugs together and then following up with the remaining Taxotere doses. I felt like an automaton as I progressed through the treatment and did what I was told. On my last day of chemo, my Oncologist had cake and punch in the chemo room because he was retiring, it was his last day too. So a week later I went into the Cancer Center to meet my new Doc, and have a follow-up visit. She walked in with her nurse and informed me that I was not done with Chemo, I still had 2 Taxotere infusions to go! I think I was very emphatic and said no, no. She explained herself and I just started crying, the thought of doing more of the drug just freaked me out. She left the room and I just cried and felt hopeless, after about 20 minutes her nurse came back in and put her arm around me and said it was okay. They had gone over my chart thoroughly and found all the notes about the changes to my treatment made by the other doctor. So all was well. Of course then I thought, I probably haven't had enough; but they said previous Doc just used a different protocol. Huh? But that's how my chemo journey ended, not with cake and punch, but with a punch to the gut!
I am still here, so protocol, schmotocol!
I have not ever heard of this happening to anyone else, so don't worry about it happening to you. I am on Doctor # 4 since then, it's a revolving door around here, I will meet my new Onco in a couple of weeks.
I am so glad that you are feeling better overall!
Talk later, love, Mary
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Hi Mary,
Oh my! I can't imagine! I would definitely lose it. I've been counting on knowing "half-way through" and 2 left. it helps me to toughen up a bit to accept what's coming. It also helps me get through whatever I'm going through at the time. It's how I stay even the least bit positive.
It makes me think about the power of collaboration. As a teacher, I've been required to collaborate with my colleagues about students and particularly about students who have or need different instruction or methods of learning. It's one of the things that I have learned to really value about my school district. But it doesn't seem that doctors do that very often. Perhaps they consult with others, but I want to expect that they would chat about patients if there are difficulties that arise. I guess they really don't have the time.
I saw another doctor in the practice when mine was on vacation. It was well into my first round, perhaps mid April. The doc I saw that week didn't know anything about me, even with my file right in front of him. I was a bit upset about it because it was during the time that I was having some side effects from my pre-meds. I didn't know how he would respond to the issue, but discussed it with him at length. It all worked out, but I can't imagine if it has been more serious.
Thank you for sharing your experience. It proves how much we have to advocate for ourselves and how important it is to be able to have a say in what happens to our bodies. Just imagine what could happen. It makes me shudder.
Love, Sue
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Hello Sue, Mary and Gill,
I have just read your posts and was pleased to see that you have all been talking together.
There is not much that I can add about your chemotherapy experiences, as my own experiences were so different. Somehow whatever happens we get to the end of that journey. In some ways it is a very individual experience, even if we are having more or less the same drugs, we all react in a different way. The oncologists probably have different views on the different drugs and which ones they feel may be better for you. My oncologist said that epirubicin (Ellence) was less harmful on the heart than doxorubicin (Adriamycin) but they belong to the same group of chemotherapy drugs so I cannot see why there would be much difference. As for cyclophosphomide (Cytoxan) that seems to be part of the group whether you have epirubicin or doxorubicin. I just know that before and after I had ECGs. As for docetaxel (Taxotere) the plan was always to have that the second part of my chemotherapy treatment. Again, my oncologist told me that it was less harmful than paclitaxel (Taxol). Since they belong to the same group I cannot see why there would be much difference. My oncologist told me that it was definitely the docetaxel that had caused the neuropathy in my feet. She also told me that there was no cure for neuropathy. This was backed up my my GP and two different podiatrists, who tested my feet for it by having me close my eyes and using some kind of prod over my feet to see if I could feel anything. I could not. I still have it seventeen years on.
There are more chemotherapy drugs now especially for metastases but others will have to speak of their experiences of them.
I am glad, Sue, that you have almost finished chemotherapy and I hope you are given enough time to recover before you have surgery. I had about four weeks break before having surgery. It is good news that your lump has shrunk.
Mary, I am always glad to see your contribution on the thread. I do hope all is OK with you and that there is some progress on your repairs.
Gill, I am wondering what you are doing during these four days of celebration.
I share the same views as you about the Prime Minister and I really think we have not been given the full report about all these goings-on during lock down. It is strange that there was no investigation into the party at the Prime Minister's apartment and I do wonder why he saw Sue Gray before her report was published. I think in all of this Keir Starmer and Angela Rayner could be the fall guys. If so, I hope the Conservatives get what they deserve at the next election. This country has gone backwards since 1945. We have innocent children in their tens of thousands going into care through poverty that Conservative governments have caused.
We keep being told that we are a rich country and we are always giving hard earned taxes away and telling the people here that we cannot afford to help them. We have money to fight wars but not money to feed people.
That is about all for today. I do experience low moods over what is happening in this country, not to mention the rest of the world.
Wishing you all the very best.
Sylvia xxxx
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Hello Sylvia, Mary, and Gill,
The state of the world is not positive right now. The violence here in the US is sometimes too much to take. I've never been afraid to be at my job or anywhere else in public, but right now, you never know. Still, I've always felt the need to stay positive and use my vote and at times, my voice, and hope my opinions are heard by our representatives. Still, I feel a sort of hopelessness for the state of things in this country.
I saw my surgeon yesterday. She wants to do surgery by the end of July so that my body "doesn't know that it's not being treated anymore." Of course my birthday falls during that time, so we're working around that. Since my last chemo is on June 29th, I still need some time to recover from that too.
The difficult thing for me is that she gave me the choice of lumpectomy or mastectomy. She said that they are both similar for recurrence rates and that it's really my choice. But how do I choose that?? If I choose lumpectomy, I have to do 4-6 weeks of radiation. If I choose mastectomy, I have to consider reconstruction which is a longer and perhaps second surgery.
Did any of you have a choice? If you feel you can share, can you give me an idea about your reasoning? I thought that the surgeon was going to tell me what she needed to do. Instead, I have to decide--which I know is a good thing, but I'm not sure how. I've been reading articles, but they seem to be repeating what the surgeon said about pros and cons. I'm not very excited about adding this emotional rollercoaster to my life right now.
Love, Sue
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Hi Sue,
I'm very glad that you've been able to talk with your breast surgeon. I chose to have a mastectomy without reconstruction because mataplastic breast cancer is more aggressive than triple negative - although my tumour was also triple negative, my subtype is largely chemo resistant. Metaplastic cancer often returns quickly and often and I was concerned that reconstruction would hide a local recurrence. I plan to have an implant once I'm 5 years out. My margins, even with a mastectomy were only 3mm. Had I had a lumpectomy I risked not having clear margins. Best of all, in recent years having a mastectomy means not needing radiotherapy. I've never regretted my choice.
Recovery time from mastectomy without reconstruction is about the same as lumpectomy. Mine took an hour and a quarter and I was out of hospital in less than 24 hours, no drains were needed.
The world is indeed in a mess. Schools don't feel like safe places any more, I avoid walking through town after 8pm, even in a small place like Norwich. The UK feels broken. Not enough police on the streets, prisons are full and violence meets with a very weak response due to a Government that cares nothing for public safety.
Look forward to your surgery, it's the easiest part.
Love,
Gill xxx
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Hello Sylvia,
I haven't celebrated the Jubilee as I'm having to stay at home with a large infected abscess on my upper back. Very painful and the antibiotics are making me feel unwell - they're not working either. So much for joining in the fun!
I expect that the beaches in Exmouth are full as it's such a long holiday weekend. The weather's been sunny and dry here, but next week is a different story.
I'm pleased to say that the Prime Minister was booed at today's Platinum Jubilee Thanksgiving service. A much deserved indignity. I think that the 1922 Committee has received enough letters to call a vote of no confidence. This will probably be defeated if Keir Starmer and Angela Raynor are fined by Durham Police. I'm deeply suspicious about the whole thing. Starmer had been investigated and the police found that no laws had been broken. Apparently some Tory MPs refused to complete the questionnaire and as a consequence weren't given fixed penalty notices. It seems to me that both the Met police and Durham police have got some serious questions to answer. The party in Johnson's flat (with evidence) was ignored by the police and left out of the Gray report, why? The UK is heading closer to the political scenario seen in Germany several years prior to World War II.
Still silence on the state of the NHS and those 40 new hospitals.
Enjoy your weekend.
Love,
Gill xxx
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Hi Sue
Pertaining to your choice of lumpectomy vs mastectomy: I was at first told I could choose, but then doc realized that since I have very small breasts, removing the tumor would leave very little tissue behind. So she recommended mastectomy, and also removing other breast and having reconstruction. But since my husband was ill, I opted to only remove breast with tumor. Reconstruction surgery requires having help for weeks, 2 of my friends/family had this and they required help from sisters/children/husband. If you want reconstruction they advise doing it at same time as mastectomy, but you don't have to, you can wait for years, as Gill was saying. If your breasts are large enough lumpectomy would work, because with TNBC recurrence usually doesn't occur in breast, but rather in more distant organs.
Pertaining to former post: we would like to think that Docs collaborate about patients they share, or at the very least, read the patient's chart before they see them. But that often doesn't happen, it is so necessary to be aware of what's happening.
Decisions, decisions. What does your husband think, he seems always so supportive.
Love, Mary
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hi Gill, I am so sorry about the abscess on your back, it sounds so uncomfortable! There is not much one can do while lying on stomach, I do hope the antibiotics start working, I wish the doc would see you and soon.
Sylvia, my repairs have not started, it is like living in limbo. We are having lovely weather, but about the time things dry out a little, here come the storms again. Hard to get outdoor things done.
I have to go, talk to you again soon,
Love, Mary
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Hi Mary,
Sorry that you don't have any good news to report about the renovations. I have some not very fond memories of builders, plasterers, kitchen fitters and so on. Plumbers are absolutely the worst - though electricians come a very close second.
Can't say that my abscess is any less painful or that the antibiotics are working. You probably know that the UK is celebrating the Queen's Platinum Jubilee this week? Naturally I'm missing the street parties, barbeques, church services and general bonhomie. The next royal celebration will probably be the crowning of a new monarch, can't be long now as Queen Elizabeth is looking very tired and frail, mind you, the King in waiting is getting on a bit and his wife isn't in the best of health.
Wishing you a weekend of good gardening weather.
Love,
Gill xxx
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Hi Gill,
I heard about Jubilee today, I was driving and I was listening to Megan Kelly Show on the radio. Her guest was Mark Steyn, he is a Canadian, and very talented, and I'm a fan! He is a fan of Royalty, and Queen E.
It's quite interesting to me that she became Queen the year I was born. Makes me feel old! I hope she can stay Queen for a while. If Charles gets in we'll have to hear even more about global warming etc. Perish the thought!
Have a good weekend, Gill and Michael!
Love, Mary
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Thanks, Gill,
Your reasoning was very helpful.
Hope you're feeling better soon.
Love, Sue
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Hi Mary,
The Queen did a spoof tea-party with Paddington bear before the Party at the Palace last night. She still has her sense of humour at ninety six. Very impressive light show with Buckingham Palace as the backdrop. Despite our appalling Government (the Prime Minister is now booed wherever he goes), we can still put on a good show. Glad we can do something well.
Abscess still not responding to antibiotics, might try some home surgery if it carries on like this.
The war on slugs continues, hope your gardening is going better than mine.
Love,
Gill xxx
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Hi Sue,
Glad to have been of some help. It's not an easy decision to make. Neither Sylvia or Mary had reconstruction after their mastectomies. We were all in our sixties, maybe age makes a difference when it comes to deciding. Reconstruction can be done many years after a mastectomy, which is reassuring. Good luck, whatever you decide.
Love,
Gill xxx
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Hello Sue,
The date suggested for your surgery to be at the end of July seems about right. I finished my six months of chemotherapy towards the end of April and I had my mastectomy surgery towards the end of May.
As for whether you have a lumpectomy or a mastectomy that is a decision only you can make. I did not have a choice as I was told I needed a mastectomy. Even if I had been given a choice I would have chosen to have a mastectomy. It made me feel more confident that all cancer cells had been removed.
One of my neighbours here had a lumpectomy and the first attempt did not give clear margins, so she was given a further lumpectomy and then all was clear. She was told before having the second lumpectomy that, if it was still not satisfactory, she would need to have a mastectomy. She did not have any chemotherapy, either before or after surgery, but she did have radiotherapy. Her breast cancer was hormonal.
I was told, on diagnosis etc., that I would be having chemotherapy before surgery, then the surgery and then after surgery three weeks of radiotherapy with boosters. It was all very clear in my mind what my breast cancer journey would be.
I do not have statistics for this country about recurrence rates for mastectomy versus lumpectomy. All I can say is that I am almost seventeen years since diagnosis.
As for reconstruction, I did not consider that at all. All I know is that a breast cancer mastectomy is not considered major surgery and that it takes about forty-five minutes to do. However, if you have reconstruction at the same time as a mastectomy, it takes a lot longer and is considered major surgery. Of course, you can always choose to have reconstruction sometime after you have finished your cancer journey. We do read about problems with reconstruction surgery, so you have to know what the risks are.
I have been fine with wearing a lightweight prosthesis all these years. You can get post-mastectomy bras which have pockets for both sides and just pop the prosthesis into it. In the UK you can get a new prosthesis on the NHS about every four years or you can buy them. I do not know what happens about all this in the US. Do the insurance companies provide them? Do they provide wigs?
If you find it too difficult to make a choice, ask the consultant surgeon what she would do.
Thinking of you. Sending best wishes.
Sylvia xxxx
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Hello Gill,
I do hope that you have made some progress with that large infected abscess on your back. It sounds very nasty.
The weather here has not been that mild or sunny, so it seems that most of the action in Exmouth for the long bank holiday has been in the pubs and restaurants. Raymond and I have kept to our home and have tried to rest.
I do hope the coming week will return to normal, that the politicians will get back to work and some decision made about the future of the Prime Minister. If the government has any moral compass they will vote to make him resign.
As for Keir Starmer and Angela Rayner being fined by Durham police, that will be a gross injustice and convince me that the police are part of the Establishment. It is quite obvious that there have been dodgy dealings and that arrogance is thriving. It is not right that the party in the Prime Minister's flat was not investigated and it is suspicious about what went on with the Sue Gray report. Why has she not spoken out?
This country is in such a mess and is so antiquated.
I am so fed up with that avatar of me and I think it is about time it vanished. I have removed it from my personal details and it is now showing S, so I was really annoyed to find it is still showing up when I post! This is not right.
I hope you will soon be feeling better.
Take care.
Love.
Sylvia xxxx
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Hello Sylvia,
I doubt that Johnson has much to worry about this evening. The vote of no confidence would cause any other Prime Minister to question his decisions and behaviours or resign. For him it will be just another small obstacle to lie his way out of before grabbing more power and destroying the UK's reputation across the globe. The promised new hospitals won't be built and our NHS will be privatised. Shame on any Conservative who still supports him.
While there's some good news for stage four patients with HER 2, there doesn't appear to be anything new for triple negatives. The drug being trialled for HER 2 will offer women up to six months of extra life. We shall see.
My abscess became very painful and raised over the weekend, so I decided on some self help. Yesterday morning I ran a much hotter than usual bath and waited. Eventually the abscess burst and I had a mini operating theatre and primed theatre nurse (Michael) on hand. I won't tell you all the gory details, but the abscess is now completely flat and I no longer need painkillers. I'm cleaning the resulting lesion with boiled salted water twice a day and renewing the dressing. It will probably come back, but the drama seems to be over for a while at least.
I often wonder how helenlouise is getting on. I do hope that she's been able to continue working during treatment as she seems to enjoy her job so much.
Wet and quite cool here as we return to normality.
Try to have a peaceful week both of you.
Love,
Gill xxx
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Hi Sylvia, Gill and Sue
Gill, your home surgery sounded awful, I admire your get-it-done attitude. I'm afraid I would have been whining to my doctor to do something! Do you expect the abscess to come back?
Surprisingly, my contractor called Monday and said the painters will be here Monday 13th. So it's starting at last, after all this time! I'm both happy and dreading it at same time. I'm emptying closets and chests of drawers in anticipation of them, and also for the flooring that will be installed.. I have bags and bags of clothing to cart away. And old fireworks and bowling balls and assorted dusty treasures and junk. Some stuff is going into the basement, I anticipate having to clear that out sometime. Next week I will have my Breast MRI, and the visit with my Oncologist, it will be good reason to escape from this house while it's being invaded.
So the Queen's celebration went on for a week, good for her, she definitely has staying power. Poor old Charles, always in the background.
Sue, I hope all is OK as you get closer to the end of your chemo journey, have you made a decision about reconstruction? I do think if I had been younger by 20 years I would have done it.
Off I go, more closets await!
Love, Mary
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Hi Mary,
Everything crossed for Monday then. Hope the weather's good as it makes renovations so much more bearable. As you say, at least the MRI and oncologist appointment will get you out of the house for a while!
I only resorted to DIY abscess draining because It had become so painful and was raised by about 2cms so visible under clothes. I waited until I'd completed my first course of antibiotics before 'operating' and emailed the health centre for another course of antibiotics afterwards as a precaution. The abscess is likely to come back and I'll probably end up paying for private treatment. Even so, I'm feeling a bit pleased with myself. Who needs doctors?
Yesterday I had a private appointment to remove some small lumps and bumps from my face with laser treatment. I had 14 injections of local anaesthetic, ouch, that was no fun at all. Laser itself was quick and completely painless. I went home with a swollen face full of dents which have now morphed into tiny scabs. The bruising isn't too bad this morning - thank heavens for face masks.
Hope Sue is doing well, also helenlouise and Adagio. Hoping to hear from Sylvia soon.
I'll be thinking of you next week. Let us know how the MRI went. Good luck with the painters.
Love,
Gill xxx
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Hello Gill,
I have been catching up on my reading of the posts as I have been quite busy here.
You seem to be having a difficult time what with the abscess and the lumps on your face. I do hope the abscess will not come back and that the scabs on your face will disappear quickly. What a lot of injections you had on your face.
What is the name of the drug being trialled for stage 4 HER2? I am interested in triple positive breast cancer because my friend and neighbour here died from triple positive metastatic breast cancer. In the beginning she had more or less the same drugs as I had and then when that was finished she had Herceptin. She was OK for a few years and then it came back and spread everywhere. She died aged 59. She was given different drugs but they did not work.
I wrote to the Moderators about my cut off avatar, and did all the things I was told to remove the picture and just put an S. It still has not worked and IT are supposed to be looking into it.
Like you, I hope we shall hear from HelenLouise and of course from Kath.
I do not envy Mary doing all those renovations.
I give up on this country. I cannot believe that the Conservative politicians did not vote unanimously to get rid of Boris Johnson. Where is there common decency? I hope they all get voted out, not that I have any confidence in Keir Starmer's Labour Party. One of the Labour lot recently said that the Party was targetting Express readers for support, rather than Guardian readers. What hope is there for ordinary people?
That is about all for today.
Love and best wishes.
Sylvia xxxx
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Hello everyone!
I had my 3rd (of 4) infusion of my second round yesterday. Aside from being extremely tired yesterday, I'm feeling okay. I go for a white blood cell booster today to keep that level in the normal range.
I also met with a radiation oncologist yesterday. He happens to be a parent at the school where I teach. I told him that I'm in the process of making the decision of lumpectomy and mastectomy. He gave me lots of information and was extremely helpful. I'm meeting with the plastic surgeon soon to hear that side of the choice.
My oncologist told me yesterday that even after my chemo is done, I need to continue the Keytruda for 9 more months. I was caught off guard and a bit upset because neither he, nor anyone else told me that before. I went back to look at notes we took early on in the process and couldn't find anything.
My goal has been to get back to work. I miss that part of my life. I'd resigned myself to the fact that I probably couldn't return at the start of the school year in September, but the Keytruda news was not positive. I'm not sure how that would go in relation to side effects for the next 9 months or if I could even start the Keytruda if I need radiation. This whole thing is going to need a lot more discussion. Unfortunately, I can't get all the doctors together at one time to compare their timelines and information as well as do's and don'ts. I think that would be more helpful.
I'll keep you all up on what's happening. Thank you for your encouraging and informative posts!
Love, Sue
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Hello Sue,
I was glad to read that you are feeling alright after your third infusion.
Have you made up your mind about what surgery you are going to have?
It is good that you have met with your radiation oncologist. What kind of useful information did he give you?
I was surprised to read that your oncologist told you yesterday that you are going to need to continue with pembrolizumab (Keytruda) for nine more months. Did you ask him why and also why you were not told this at the beginning of your treatment? It would seem to me that it would make more sense to finish your chemotherapy, have your surgery, and then go forward. Alternatively, you could ask what the pathology report shows when you finish the fourth and last session, and whether the tumour has completely disappeared.
I can understand how keen you are to get back to your teaching work. This will fill your mind with other thoughts.
You also need to know how long your radiotherapy will be and how long you will have to wait between having surgery and starting radiotherapy and whether you will be taking the Keytruda during all this time.
I did look up Keytruda and it says it is given through a slow injection.
It would be so useful if you could manage to put your details up in your details area. This would help us to remember and be useful for anyone viewing.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hi Sylvia,
I've put all my details into the portal; I just need to figure out how to get the to appear. I work on that soon.
Yesterday I had a white blood cell booster and with everything else, I starting out with a difficult day. We'll see how that progresses.
I found the notes that my husband took at my initial consult with my oncologist. He did say that there would be 9 additional infusions, not nine months. They are every 3 weeks, so it would continue through January. I have to see how my body reacts to Keytruda only.
In April, the tumor had shrunk by about half. When I do a self exam, I don't feel very much and either did the surgeon. But everyone wants to wait until after the last chemo infusion to have another ultrasound.
I haven't decided on which surgery to have. My surgeon suggested I meet with the plastic surgeon. We're trying to get an appointment with that doctor, which is proving difficult. I did get a lot of information from the radiologist. He would begin treatment about 3 weeks after surgery. In the second week after surgery he would create a "map" to help him properly target the location in the breast. He said it would be radiation every day (Monday through Friday) for 4 weeks.
I got nervous about surgery, Keytruda, and radiation occurring simultaneously. So my husband called the 3 doctors yesterday and they all checked with each other and decided that it's all fine and they'd just coordinate the schedules.
I've just got to get through the last chemo and make my decision about surgery. I'm leaning toward lumpectomy right now, but I haven't met with the plastic surgeon yet.
I'll let you know how it's all going. Thank you for checking in.
Love, Sue
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Hello Sue,
I hope you are feeling a bit better today and I do hope that you will be able to manage the additional injections of Keytruda every three weeks. At least with the every three week routine your body will be able to recover. With treatment continuing through to January, you will just have to take it one treatment at a time and see how you go. Make sure you know why you are having to have this extra treatment. You really need to know the pathology report results and what scan etc. when this first lot of chemotherapy finishes in the near future. Never accept what you are told without questions and never accept anything without being fully informed and feeling assured.
For the moment concentrate on finishing chemotherapy, having your surgery, and recovering.
As for lumpectomy or a mastectomy they are routine surgeries. However, if you have reconstruction surgery straight-away that makes everything more complicated.
This forum still seems to be in a mess and not getting sorted out. I am so fed up with it. We could always see the number of views that our thread was getting, but that seems to have disappeared. We now just get the number of posts but we do need to know how many people are viewing to see whether the thread is worth continuing. I also do not like the fact that my truncated avatar cannot be removed by the so called experts and replaced with the simple letter S. What a mess the experts have made!
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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I have just checked the main Forum and found that the number of views is now listed!
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Hello Sylvia,
I'll keep looking, but at the moment I'm unable to find the site with information about the HER2 drug that extends life by up to six months. However, I did come across this https://www.astrazeneca.com/media-centre/press-rel.... It's an interesting read. When I began my search I was looking for new ideas for treating triple negative and metaplastic cancer. Very frustrating for those of us who want to see the latest research on metaplastic as Google will come up with one or two articles at best, and then decide that I really meant to type in 'metastatic' breast cancer - plenty of articles on that.
I think that it's probably time to give up on any idea that the Tories will get rid of Johnson and suddenly become the decent, honest and hardworking politicians some members of the public thought they were voting for. Johnson and his cabinet of sycophants have managed to fall out with most if our former trading partners and now the United Nations. We've become a rogue state in such a short time. Sending traumatised refugees to a dangerous African state is not only barbaric, but against international law. So the United Nations is up in arms. How long before we are thrown off the Security Council I wonder? Johnson is now trying to foster further division in the country by suggesting that the attempt to force him out was a plot by 'remainer' MPs, despite the fact that many of those openly stating that they wanted him to resign, had supported brexit.
Everything here is broken, it's very depressing. I wonder where this will end. Serious food shortages will occur before long as our supply of grain dries up. Do you think Johnson has planned ahead? This Winter they'll be thousands of people who will no longer be able to heat or eat or pay their rent.
On that unhappy note, I'll wish you a quiet weekend.
Love,
Gill xxx
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Hi Sue,
I wish you luck in making your decision about lumpectomy versus mastectomy. In my own experience, plastic surgeons are very keen on reconstruction. Perhaps you could ask your surgeon to clarify how many surgeries, on average, do adjustments to the original reconstruction require. Getting a reconstruction that you're happy with may mean several operations. Your other breast may need to be adjusted as well, until your surgeon gets the balance right.
Hope you are feeling a little better today. Normality will return, focus on that.
Love,
Gill xxx
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