Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sue,
Thank you for your post. I was glad to read that the days after your treatment have been manageable. I do hope you will get a good report on your white blood cells, next time you are tested.
Like you, I did not take any medicine before my diagnosis and had been in good health. When diagnosed I was just told I should not have it. I was very reluctant to have breast cancer treatment because I knew a lot about it and knew what was in store. I delayed for three months while investigated other treatments and then decided I needed to have it. My breast cancer surgeon understood my reluctance and actually referred me to a homeopathic breast cancer consultant at another NHS hospital, where she referred other patients. I stayed with that consultant even when I started orthodox treatment and the two consultants worked together. I took homeopathic medicine throughout my treatment and I think it helped. I would not advise others to delay.
It is the same here in the UK when you are prescribed medication. There are leaflets in the boxes which are very frightening and would certainly put you off taking them. I am not on any medication.
I can understand that you miss your teaching. Have you retired or will you go back when you have recovered from your cancer treatment. I was a teacher and have taught French as a second language and also English as a second language in France, Morocco and England.
You are doing the right things to get you through this. Drinking plenty of water and eating what you can will help. As for having trouble sleeping, it is probably the steroids causing that. When I had my treatment I signed the consent form on the condition that I was not given any steroids. They probably put some in the infusion anyway as an anti-sickness medication. I never had any kind of problems except fatigue.
I can understand how difficult getting through the infusion is and it takes a long time. I am sure your husband is doing whatever he can but it is true that husbands sometimes need a break from it all. They will be frightened about it all, just like you are. I actually took up the offer from the oncologist to have the Hospicare nurses visit me regularly. I used to have good conversations with them and I still bump into a couple of them all these year later. They were very helpful and could get things done for you if you wanted. The District Nurse used to come in the day before my chemotherapy session to take blood. Of course, all this would be very difficult now because of Covid.
Take advantage of the things that you can do and enjoy the Zoom meetings with your friend. I was glad to read that she is three years out from diagnosis and doing well. What kind of breast cancer did she have and what was her tumour status?
That is about all for now. Keep positive and keep looking forward.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I have not seen you on the thread and am concerned about how you and Michael ore getting on having been diagnosed positive for Covid. I do hope you are both making good progress.
There is nothing much to say, except that the forum is way too slow and the format too bland. It has just taken me ages to look at the Active Topics. The pages are too short and so there is too much clicking.
I think thw crowds are about to arrive in Exmouth or may already be here.
Thinking of you and wishing you better.
Love.
Sylvia xxxx
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Hello Sylvia,
I'm reading all the posts from you, Mary and Sue, so keeping up to date.
Michael is almost his old self again, but I've been much slower. Some might claim that Covid infections are just like normal colds - and this may well be true for vaccinated younger people with better immune systems, but certainly isn't the case for everyone. I'm very short of breath, with a painful cough and what feels like a weight on my chest. Also permanently exhausted. This Government is ignoring the strength and level of new infections, I'm afraid things are about to get a lot worse if restrictions aren't brought back soon.
Hope you and Raymond remain Covid free. Tourists flooding into Exmouth for the Easter holidays isn't good news.
The site is really much too complicated now and still slow.
I'll post again when I'm feeling better.
Love,
Gill xxx
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Hello Gill,
I was so sorry to read that you are feeling unwell and I do hope that you will recover soon. I think the powers that be need to realise that they do not know how each individual will react to Covid and they should stop making light of it. Most people are acting as though it is all over and it is not. I remember a few weeks ago that quite a few more symptoms were added in addition to cough, high temperature, loss of smell and taste. I am pretty sure that breathlessness and exhaustion were added.
I see what is happening where I live in the apartment complex and residents are now having all kinds of visitors, friends and family, inside their apartments. This is not wise. Raymond and I keep ourselves to ourselves and still avoid the seafront and the town.
Take great care of yourself and know that we are thinking of you.
Love.
Sylvia xxxx
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Hello, Sylvia,
Scientists are calling out for masks, social distancing and some common sense to be used before people risk socialising. Is it really too much to ask? For the sake of his popularity (!!!), Boris Johnson has decided to ignore the science until infections are out of control and the NHS crumbles. We are being told by many hospitals, to go to A&E ONLY if there's imminent danger of death. Heaven knows what we're supposed to do if we break an arm or leg, have a 'bit' of a heart attack or one of those pesky brain haemorrhages? I can't bear to think about the fear and despair being felt by those many people, including children, urgently needing cancer treatment, but with no appointment on the horizon.
I'm not as breathless as yesterday, but Michael's cough returned this morning. Covid appears to be very successful in attacking any prevailing physical weakness and deficits vary from person to person. This isn't over, you and Raymond are being very sensible, it's a pity that others are being so selfish.
Hope your cousin is still coping - you haven't mentioned him for a while.
Take care both of you.
Love,
Gill xxx
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Hi Mary,
Hope you're still managing to stay Covid free after your encounter in the store. Please be careful.
The Cathedral was full at the Latin sung Mass on Palm Sunday. I watched it online and noticed that the Bishop seemed to have a cold - fingers crossed it was nothing worse.
Wishing you a blessed and peaceful Easter.
Love,
Gill xxx
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Hi Sue,
I'm keeping you in my thoughts and prayers. You and your family are going through the mill at the moment and the pandemic is just making everything much harder.
I think most of us find chemotherapy the worst part of the breast cancer ordeal. I felt as though I should consider giving up once the side effects really kicked in. My body kept letting me down, several bouts of sepsis and a serious infection. I'm very, very glad that I ploughed on. Following chemotherapy, very few of us escape without a longer term side effects, however small. Peripheral neuropathy is common, brain fog and fatigue are very common, but nothing that would stop us from enjoying our lives, work and family again. If the chemotherapy is making you ill, just think about what it's doing to the cancer. The outcome is absolutely worth it.
Keep on doing exactly what you are doing.
Love,
Gill xxx
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Hi Gill
Sorry you are having a rough time from the Covid. I suppose the bright spot is that once you recover you should have more lasting immunity. I'm glad to read that you are a little better, I wish for your continued improvement. And for Michael's of course. The friends who I went to Scotland with both came down with Covid, they have both recovered for the most part. I find it odd, after all the miles we covered they both came down with Covid once home and back at their jobs. As of now, I'm still in the clear. I have my usual sinusitis/ allergy symptoms, which are not helped by warm windy days followed by chilly wet ones.
I also find it odd that, back in 2014, when I was diagnosed with BC, there was a spate of women around here who suffered similarly. Most of them had DCIS, and many opted for full mastectomy and reconstruction because of this. There were only a few that underwent chemo and radiation, and I was the only person in my area that had TNBC, to my knowledge. Now I don't hear of any diagnosed people, and I hope it's not for lack of screenings, since hospitals have gone through such drastic changes because of Covid.
Take care, Gill, hoping you regain your strength very soon.
Love, Mary
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to all,
As to this thread, I'm having the same login problem, and my chemo info is gone. I wonder if the moderators didn't want us comparing to others? I don't know, but I found it interesting to see how chemo drugs changed over the years, with some remaining the same.
Raymond is right, the thread is more bland than before, I suppose we can still post pics, I'll try that later.
Mary
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Hello Gill and Mary,
I have just been reading your posts but I shall write in more detail tomorrow. I have not had much free time today.
Take care of yourself, Gill and I hope you get better soon. I was glad to hear that Michael is getting better but that cough must be exhausting.
I think the problems with this forum are really exasperating people. Everything is such a chore. I can see what you mean about your chemotherapy details going missing. This is not acceptable. It is very important that we put in the names of our chemotherapy drugs etc. I just looked at mine and they are still there but I suppose they will go the same was as yours. All I can suggest is that we keep putting them in our posts as we do them for the moment. This line Chemotherapy Other is absolute nonsense. All these problems are going on for too long.
Take care and I shall be in touch tomorrow.
Lots of love to you both.
Keep safe and above all keep sane. What a mad world we are living in!!
Sylvia xxxx
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Hello Sylvia, Gill, and Mary,
Your words are also so inspiring to me. It helps me to continue to fight hard every day. I had a difficult weekend, but managed my way through. Not easy, but not impossible, especially when I read your suggestions and ideas.
I'm sorry about the status of COVID in the UK. It's getting worse here and several of the larger east coast cities are requiring masks at indoor dining and events. People are mad about it, which just makes me shake my head. Our Dr. Fauci said COVID is not going away, so we need to rethink our "norm" and keep the unknown in the back of our minds (paraphrased of course).
I also did a zoom with a friend yesterday. She is so positive and reiterated many of your suggestions. She told me that someone told her to look at all the chemicals differently--not as a poison, but as the catalyst that is saving your life--killing the cancer. That's hard to do when it reeks such havoc on my body. But it's something I will definitely work on.
Right now, eating anything substantial is making me feel ill. Most things also taste terrible, so it kind of takes the joy out of eating. It's one of the things that upsets my husband. He's an amazing cook and has done so well adapting my diet. I've tried to assure him that it's okay. But I'll have him talk to my doc tomorrow, just to reassure him a bit more.
I'm also feeling exhausted, but I'm taking naps and just lying down when I get tired.
Did any of you use a protein drink (Ensure, Boost...) when it was difficult to eat? I'm not sure how to keep my numbers in safe areas now that I'm not eating very much.
I wish for your safety and good health.
Love, Sue
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Hi Sue,
It can be very difficult to be positive when you're right in the middle of this horrible treatment, but I have no doubt at all that you'll get through it. One day soon, you'll suddenly spot a glimmer of light at the end of this long, dark tunnel. Chemotherapy made me feel more ill and despairing than I'd ever felt in my life, I couldn't eat and found drinking very difficult. Even plain water tasted disgusting. I could just about tolerate a splash of lime cordial in a glass of water. In the palliative care unit here, we used Ensure for patients who couldn't tolerate eating normal food. It worked extremely well. Most patients preferred chocolate or banana flavoured Ensure. The strawberry wasn't too bad, but vanilla was universally disliked. Worth a try!
Good luck.
Love,
Gill xxx
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Hi Mary,
Pleased that you're still Covid free and sorry to hear that your Scottish adventure friends have been unlucky. Your sinusitis would be made much worse by Covid, (the sinuses around my right eye are painful), so you need to be careful. Best to avoid parties or any kind of fun at all all for the foreseeable future!
The number of women being diagnosed with breast cancer was estimated at 1 in 7 in the UK last year (I'm guessing it's similar down your way), so lack of screening may well be the reason why you're not hearing about anyone being diagnosed. Covid has caused havoc with cancer screening and treatment here. Health services across the globe should have been better prepared for a pandemic, after all, scientists have been warning about it for years.
This Covid thing is very persistent and it seems that I feel much better one day and then worse the next. I shall keep looking forward to all that immunity coming my way!
Love,
Gill xxx
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Hello Gill,
I do agree with what you say about masks, social distancing and common sense. Unless you tell most people that they have to do something, they will not do it. Everywhere you look it is as though Covid has disappeared, never to be seen again. As for common sense, remember the famous saying "Common sense is not so common".
I do hope that you and Michael will soon be clear of Covid and back to normal. The people I know that have had it seem to be unwell for about a week and then slowly recover, but are left exhausted.
You mentioned my cousin. I am still in very close contact with him and I am concerned that the infection he had and that made him desperately ill, may be returning. It is all very complicated to explain and I still do a lot of phoning on his behalf, as he does have these memory problems. The various doctors and other medical people know me well, so I am able to check that he attends appointments. He carries on with the simple routine of his everyday existence. He cannot retain information for very long.
It has been a quiet day today, fairly mild and dry, but I feel the Easter onslaught of people coming to Exmouth has already begun. The open top double decker bus from the town centre to the holiday resort, known as Sandy Bay, has begun its route. It functions twice an hour daily from April until November.
I have been listening to the news about Boris Johnson, not to mention the Chancellor. I think the Prime Minister will refuse to resign, even though he has lied to Parliament, and I think he hopes the Ukrainian situation will get him off the hook. I do not think there should be any connection. He is using it as a photo opportunity. I watched a gathering of the so-called Greats and they all seemed to be avoiding the Prime Minister and he was just standing there looking empty and putting his hands in his pockets as he does. Raymond called him "Boris no mates!".
That is about all for now.
Please take care of yourself and give Michael our best wishes.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I visited the Exmouth beach webcam yesterday and noticed that there were more people about. No doubt it's the same along the Norfolk and Suffolk coast. I know more people who have Covid now than at any other time since the pandemic began. Far fewer people are testing, so Boris Johnson et al have absolutely no right to claim that Covid is rapidly declining. Talking of Johnson, I see that the Guardian's John Crace has stopped writing about him as 'the suspect' and moved on to 'the criminal'. Never in the history of Parliament have we had a convicted criminal as Prime Minister, Prime Minister's wife and Chancellor of the Exchequer.
My daughter tells me that in her experience, it's common for Covid patients to feel better for a day or so and then feel unwell again - coughing, breathlessness etc. Easter is a special time for Catholics, but we'll be staying at home. Mask wearing should never have been made optional in Churches or any other enclosed space. We can expect a post holiday surge and another 'world beating' solution from our shape shifting liar in chief. Seems neverending.
Wishing you and Raymond a peaceful day.
Love,
Gill xxx
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Hello Gill, Sylvia, and Mary,
It's been a difficult few days. Aside from not being able to eat much, I've been so exhausted, except for yesterday, prior to my infusion, when I was able to do a bit of cleaning around my house!
But my good news is that my white blood cell count was back up and I don't have to have another booster shot!! Unfortunately, my doc said that it's standard during my second round which will begin immediately after round one is finished. The second round will be every three weeks and the Keytruda will continue. I have only one more session in round 1 scheduled for next week.
I had a strange reaction after I took my pre-infusion steroids on Tuesday evening. About a half hour in, i started to feel itchy, first on my chest and then everywhere! Then I got chills. I crawled under the covers and after a few minutes the chills subsided. (I had checked my temperature and there was no fever. There was also no rash or red spots on my skin.) The itching subsided for the most part by the time I woke up on Wednesday.
I told the doc about the prior evening and about the prior week's infusion where I remembered feeling a little bit itchy. I had told the nurse, but since the itching stopped right after the pre-med, she added it to my infusion notes for the doc. When i mentioned both itching episodes to the doc yesterday, agreed to lower the amount of steroids in my pre-meds.
Unfortunately, the itching got bad yesterday. My legs were restless also. When I told the nurse, she went directly to the doctor. He gave me Adivan. It was awful. (I've never taken anti-anxiety meds in my life.) It didn't get rid of the itching, it just knocked me out for the remainder of my infusion and the remainder of the night. Until, that is, midnight, when I was wide awake.
Have any of you had or heard of a similar reaction to pre-meds? I don't remember anything from the moment I went to sleep in the infusion chair until the time I woke at midnight, aside from short snippets of time.
Gil, thanks for the info about Ensure. I'm going to try some flavors and see if it will help keep my numbers in a safe place.
Love, Sue
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Hello Gill,
Thank you for your latest post. The town centre and Exmouth beach are beginning to get busy and with the weather supposed to be mild it can only get busier.
Like you, I seem to know more and more people who have had Covid now than at any other time. I do wonder how we are going to get out of this mess. It seems that lock-down has messed up the economy and I think that has come largely from the furlough scheme. It may have made more sense to allow them to work and to use common sense in taking precautions. After all, we have never made a big fuss about people going to work with a cold and I recently read that the cold virus is a corona virus. This morning I was listening to the early morning news and it was all about the increasing numbers of people with Covid and the increasing numbers in hospital with it. It looks as though the plan now is to let people catch it, the herd method, until almost everyone has had it and acquired immunity through antibodies. The powers that be do not seem to be pushing the next booster. I think they are too busy dodging the police fines!
I do not think Boris Johnson or the Chancellor will resign. They will have to be forced to go.
This morning I also listened, yet again, to the terrible state of the NHS and the chaos at A&E, not to mention the ambulance service. No progress is being made.
I think that your daughter is right about Covid patients feeling better and then feeling unwell again. Those that I know are very, very tired and need to rest more often.
Goodness knows how the NHS will ever get rid of all the cases on their waiting lists. Lack of money keeps being brought up, but there is also a huge shortage of staff and just not a hope of finding any. There are lots of vacancies and lot of existing staff off sick with Covid.
I do think there should be a lot more emphasis, as well, about the cost of living crisis. Multi-millionaires will not have a clue on what it is like to be without money to pay your bills or have enough to feed your family. We are such an unequal society.
Wishing you a peaceful holiday weekend.
Love.
Sylvia xxxx
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Hello Sue,
I was sorry to read that you have been having a difficult few days and that you have been feeling exhausted. As I said before, the side effects from chemotherapy tend to build up as you proceed through your treatment and you tend to feel better a few days or a week before you start the next treatment. Women on the thread have said they felt the weekly treatment routine was easier than every three weeks, but everyone is different.
Concentrate on the good news that your white blood cell has gone back up, which means the filgrastim (Neupogen) has worked. How long are you going to be on chemotherapy? I was on it for six months. In that time I had three months of two drugs, epirubicin (Ellence) and cyclophosphomide (Cytoxan) every three weeks. When I had finished that I had one drug, docetaxel (Taxotere) for three months every three weeks and then that was the end of it.
You seem to be having more drugs than this.
I am wondering what is going on with your pre-infusion steroids. Do you mean steroids in pill form that you actually had to swallow? I just remember being told that there would be steroids in the drip chemotherapy infusions. What kind of steroids are you taking? When I was going through treatment the most common steroid medication seemed to be dexamethasone. This is a long-acting and potent corticosteroid that is used in conjunction with other drugs to alleviate the nausea and vomiting associated with chemotherapy. Do you think you were given too much? My information is that the most common side effect is indigestion and that rare side effects are weight gain, acne and other skin effects, fluid retention, muscle weakness and mood changes. Any severe skin problems should be discussed with your doctor.
I remember the other common steroid that seemed to be given at the time I was going through treatment was prednisolone.
I do hope you will feel better soon and that you will have more appetite. You need to keep your strength up.
The anti-anxiety pill that you took, Ativan, is its brand name and the generic name is diazepam or lorazepam, is a very common drug. At least it got you to sleep but I doubt it would have been any use for the itching.
I can only speak for myself but I am very wary of doctors and pills and I was extra vigilant during chemotherapy and I do not remember taking anything. I just had the infusions.
I do know about Ensure as I have known many people, especially elderly people, getting it on prescription. It is not something I have ever taken.
I do hope you can have a peaceful and relaxing weekend and that you will feel better. Try to eat some healthy food, little and often.
I shall be thinking of you and sending healing wishes your way.
Love.
Sylvia xxxx
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hi Sue
Your latest post really brought back some memories, regarding the itching caused by pre-meds. There were 4 or 5 nurses that worked in the infusion room I went to, and I would have a different one attending me at different times. My routine ,as I recall, was to take steroid pills 3x a day for 2 days before infusions and 2 days after. The day I went for infusion they would hook up an IV to the port in my chest and start giving me more steroids, anti-nausea meds, and Benadryl to stave off allergic reactions. These would be dripped from various bags. One day I went in to a nurse I hadnt seen before. She did not drip the Benadryl but instead injected it into the line. My legs started jumping uncontrollably almost immediately and my skin was crawling. I don't remember what they gave me to make it stop but it was so awful. I had never liked Benadryl but I tolerated it when dripped, not injected.
I did not like steroid pills either, they made me feel tired and yet wakeful, and upset my stomach.
The other time I had a reaction was when I was hospitalized after 1st infusion. On about the 3rd day they had taken me off some of the anti-biotics and other drugs and one night I began itching and my legs would not stay on the bed but began jumping and flailing, finally my friend got a nurse to come in and give me something that knocked me out, and I was glad of it.
After the Benadryl incident I would tell the attending nurse to drip it slowly, if I must have it. I had no more of these incidents, although I still do have incidents of minor restless leg syndrome at times, along with the neuropathy.
These are powerful drugs we are given but they are given for a reason, I would try to remember.
I do remember a period when even water tasted bad, I hope that passes soon for you. most of the time I could eat scrambled eggs and yogurt, they would slide down. There are also protein drinks in grocery, the Naked brand and Bolthouse, they have more protein than Ensure but also lots of sugars.
I must go, i am thinking of you, and wishing you better times,
Love Mary
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Thank you everyone, for all of your responses. You are always so helpful.
Mary, you described exactly what I was feeling--the jumpy legs and itching. The adivan put me to sleep, which is probably what they were aiming for. It also caused me not to remember anything for the remainder of the day and night. I woke up at midnight with no recollection of getting home (my husband) or anything else until I woke up.
I was thankful for the relief of the itching, but not to be totally out of it for the remainder of the day and night. Is that a price to pay?
I will ask about injecting as opposed to dripping the premeds. This week is my last infusion of Taxol and Carboplatin. On the 27th I start the second round with the heavy duty stuff. That will be infusion one week, then rest for 2 weeks over the next few months.
Will write again soon. Sue
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Hello Sylvia, Mary and Sue,
The responses to Sue reinforced just how valuable this thread is to women who are going through chemotherapy. Mary has posted about side effects that I didn't realise could occur. Why do oncologists and chemotherapy nurses ignore patient based evidence? In my case my consultant oncologist ignored my very concerned Registrar who asked that my dose of Docetaxol be lowered as It was twice as likely to cause sepsis as the first part of my treatment - FEC. I wonder if Sue has a specialist oncology nurse to telephone or email. Mine was excellent and listened to the experience of patients and acted on it.
Sue, good luck with the heavy duty meds. You're being realistic about what is to come and I found that this helped. Each treatment takes you closer to where you want to be. You tumour is the enemy, chemotherapy is your knight in shining armour (bit poetic, I know), just let it get on with its job. Be very kind to yourself, eating unhealthy food, if that's all you can tolerate, is absolutely fine, you can return to healthy eating as soon as this is over. I wanted to take vitamins, but my oncologist ruled all vitamins and mineral supplements out before chemotherapy.
Mary, it seems that in America, you have meds to help you relax or sleep through chemotherapy infusions. We don't have that here and I feel that it's probably a good thing. I didn't find the actual infusions difficult - just the after effects! Hope the weather is warm and sunny down on the farm, your sinuses could do with a break. Horrible, painful condition to suffer from. Sending Easter blessings to you and all those you love.
Sylvia, you will know what I'm thinking about the state of the UK. The ambulance service has collapsed in many areas and GP surgeries are closing due to Covid outbreaks. Hospitals full of Covid patients and many staff are off sick. Scientists are begging Johnson to reinstate masks and social distancing, but he's determined to let this horrible disease run wild. Distracts from partygate no doubt. We are staying at home and watching the Easter services virtually again.
Keep safe and well everyone,
Much love,
Gill xxx
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Hello Gill,
I have just read your post, which, as usual, I found interesting.
Reading what you and Mary have posted to Sue, about your experiences during chemotherapy, enabled me to refresh my memory of your experiences as well as refreshing my memory of my own experiences. I am now not far off seventeen years since diagnosis. Sometimes I feel like I want to start re-reading our thread from page 1, when it all began, but I think it is too big an undertaking for me.
My own experiences of chemotherapy were very different and the main problem was just being more tired than usual. I am a very energetic person, so having a rest was new to me. I carried on gardening and my other activities.
As you know, I delayed treatment for four months and then started the orthodox treatment but I took other things at the same time. I had epirubicin and cyclophosphomide, but not the fluorouracil and all was fine. After that I had docetaxel and that was fine, except that I learnt later on from my oncologist that it was this drug that caused my neuropathy in the feet. That neuropathy did not appear until quite towards the end of my cancer journey. It does not bother me that much. I do have mild lymphoedema and did have some physiotherapy for it, but I do not wear a sleeve to control it and just do exercises from time to time.
All in all I feel I had quite and easy time compared to others, but I really did my own thing when it came to vitamins and I did have oral Iscador for five years. I am sure all of this must be somewhere at the beginning of our thread.
When I was going through treatment, the taxanes seemed to be relatively new drugs for breast cancer treatment on the NHS and it looks as though they cause more problems than the older drugs such as epirubicin, doxorubicin and cyclophosphomide, which have been around for a long time.
Each day brings bad news about the state of the UK. The NHS seems to be getting worse. I heard on the radio this morning that the number of patients in hospital is at its highest point ever. The main problem seems to be lack of staff, either because they are off sick or because there are huge vacancies. This morning it was said to be 110,000, compared to 100,000 two years ago. It was also said the main problem was the cash starved, staff starved social care. That is the sector that needs money and is causing a problem in the hospitals because bed are being blocked by patients that need social care and there is no space available for them. Cancer care has not kept up to par.
Covid is still very much with us and people are not using common sense about trying to stop the spread.
As you say, the Prime Minister is showing off and doing everything to distract attention from the mess he is making of this country.
That is about all for now. I do hope the forum will improve, but it does not look likely.
Thinking of you. Are you and Michael alright now? I do hope so. I shall be glad to see the back of the Bank Holiday!
Love.
Sylvia xxxx
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Hello Sylvia,
I do think experiences of chemotherapy can be quite different and age doesn't seem to be a major factor. My tiredness in the year following treatment was very depressing, but improved over time. Unfortunately, Covid has brought me back to a state of exhaustion. It didn't seem much worse than a cold when I first tested positive, but has left me permanently tired. I spend most of the day resting. Michael is back to normal. I'm beginning to think that having had chemotherapy, (my last treatment was 3 years ago), might be a factor. I really have no patience with those people who refuse to wear a mask.
I did some research on taxanes prior to treatment and they were considered to give those with metaplastic cancer the best chance. Metaplastic being unresponsive to most chemotherapy types. It certainly seems to cause the strongest side effects though. However, less nausea is reported by many women who suffered badly during the FEC, fluorouracil, epirubicin and cyclophosphamide treatment. My doctor told me that it was epirubicin that caused the dreadful nausea.
I'm afraid that our NHS has been deliberately pushed to the point of no return. How can it ever recover now that it's losing so many medical staff? Volunteers are being used to take patients to A&E in car ambulances in some areas of England. Many people are paying for surgery as I did and of course, this is exactly what this Government knew would happen. Private healthcare does not include emergency services, these are available only in the NHS. I had to sign an agreement before my mastectomy to say that should anything go wrong, I consented to being transferred immediately for emergency treatment at an NHS hospital.
Apparently, the Prime Minister is due to give his version of partygate events today. His ministers are telling anyone who will listen that the police fine was no more than most of us (not me) have had for speeding. Also, the cake never left its tupperware box. No mention of lying to Parliament then? No mention either of a photo showing him pouring alcohol into a whole table full of glasses at the party he didn't know was a party and in any case didn't attend and if he did attend he didn't know he was there. Anyway there's a war on and he's going as Churchill. Meanwhile, down at the foodbanks, on the hospital wards, in the care homes........
Keep well Sylvia and look after Raymond.
Much love,
Gill xxx
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Hello Gill,
I do agree about chemotherapy and I do not think age counts very much, except for very elderly people who also have other health problems. I know of two people well into their eighties and nineties who had breast cancer and seemed to suffer a lot just from the surgery and the anti-hormonal medication they had to take, along with their normal medication. The more elderly of the two went downhill quite rapidly and died. I think the state of health before diagnosis is also a factor. I had never been ill.
I was sorry to read that Covid has brought you back to a state of exhaustion. I have been hearing this from various people. The actual Covid was not a big event but it has left them feeling very tired and lacking in energy. Make sure you get plenty of rest.
It is good news that Michael is back to normal and I am sure he will look after you.
I think that the chemotherapy treatment you had could be a factor. Three years from the treatment is not a long time and your immune system is probably recovering.
I do think that the taxane drugs, whether you have paclitaxel (Taxol) or docetaxel (Taxotere), take a great toll on you. My oncologist told me, when I asked her why she had chosen docetaxel rather than paclitaxel, that it was because the docetaxel was less harmful on the heart. Who knows where the truth is? I think the drug companies are so anxious to get patients with triple negative tumour status onto drugs that they will push anything. We have to remember that the taxanes cause neuropathy and that also came from my oncologist. The taxanes came up with reference to lymphoedema in a book I read some time ago.
Did you hear on the news the latest thing about mask wearing and microplastics getting into the lungs from wearing them? This is not good news and made me think about asbestos and how it causes mesothelioma that can occur twenty to forty years after exposure. One of my uncles died of it. It looks as though the masks may be a problem, as well as all the protective clothing.
There is not much news being given out about all the problems with Pfizer vaccine, either. There is huge documentation about it but they are releasing it very slowly.
I do agree with you about the state of the NHS. It seems hopeless. My brother in Essex went through a load of hassle recently trying to get an x-ray on his back. He was told at his GP surgery that not only is there no such thing as a registered GP for a patient but the same applies to surgeries and their clinics. He is going to have to travel to a different surgery, see a strange GP and have an x-ray there. Everything is such a muddle.
I watched the parliament channel yesterday with the Prime Minister doing his usual performance. He should be made to resign. I think it is about time the police issued the other fines and the Sue Gray report came out. I do not think the way the Prime Minister is trying to push himself forward as the great war hero is acceptable. Churchill he is not! Charity begins at home. The state of this country is shameful.
It is a sunny day here and there has been a huge gathering of crows in a tall sycamore tree behind our building. The noise has been incredible and the crows have been flying in from all directions.
I do not think it is very sunny inside my mind! Sometimes it would be nice to switch it off! I have been told quite often that I think too much!
That is about all for now. Look after yourself and take as much rest as you feel you need.
I am wondering what has happened to Kath, HelenLouise and adagio. All countries seem to have so many problems.
Love and best wishes.
Sylvia xxxx
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Hi ladies
Gosh that was an effort to find u all! Not so sure about the new format! Hope everyone is well? I’m 7 days post recovery from Covid at home with a terrible cough. Life has been crazy and after a stint at the Melbourne Grand Prix my husband got Covid and passed it on to me four days later. All I can say is thank goodness I was immunised. It was terrifying. Day 4 I could hardly breath but that goodness I’m much better now.
We head to the UK and Ireland in May so I’m hoping I’ll be better by then. Omicron and the BA 2 variant are everywhere and our Aged Care Facilities are getting hit hard.
How are u all? I’m really look forward to head to the UK. I’m going to catch up on all the reading
Cheers
Kat
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Hello everyone!
It's so good to read everything you write. It's so helpful.
I'm so sorry to read about you medical treatment issues in the UK. In the US, we have our issues, both medical and political, and oh yeah-related to COVID. People are ignoring the climbing infection rates and fighting against mask mandates. They are tending to look at the mortality rates, which have remained static, partly due to the good vaccination rates around the east coast.
For me, it's frightening because of my decreased immune system. I do not go our much and limit visitors to outside and masked. Everyone who visits me follows my requests, so I don't worry much. I also don't have many visitors--which is very hard on me. My husband also masks at indoor shopping places and tries to keep me as safe as possible--he knows the possible outcomes if either of us are infection, though we are both vaccinated and boosted.
After the issue with the ativan last week, I had a fairly uneventful weekend. Somewhat fewer aches and pains, though I have a very low appetite. I take a multi-vitamin and at times that I just don't want to eat, I drink Ensure. My blood test numbers are good!
Yesterday was the last treatment in round 1. To avoid any "allergic" itchiness and jittery legs, the doc lowered my steroids and suggested Allegra and ativan (again). I talked him into half the dose I received last week, and that I'd request it of the nurse if I became uncomfortable. Of course, the itchy, jitteries started half way into the pre-med, so I asked for the half dose ativan. This time, it put me to sleep though the uncomfortable period, but I woke up with full faculties and felt alert and generally okay enough to eat a bit.
Next week, I start the stronger round of chemo, once every three weeks. I'm a bit nervous, but I know I have to keep learning how it affects my body and adjust from there.
Thank you all for the things that you write. It's so helpful to read your thoughts and ideas and advice. It's helping me make it through with my sanity intact. My lucky day was the one where I decided to write to all of you.
Love, Sue
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Hello Kath,
It has made my day to find you back on our thread. I was glad to know that you had found your way back to our thread. It is unbelievable the mess that the forum is in. This is what happens when technology cannot stop messing around with everything! It has been weeks now that this has been going on and still no end in sight.
I was so sorry to read that you have had Covid and are still recovering. I hope the bad cough goes away soon. It sounds as though you have had a bad time. I hope you are feeling much better soon. How is your husband doing?
I do hope you will be totally recovered and ready for your trip to the UK and Ireland.
It is true that Omicron and the BA2 variant are everywhere. It is exactly the same here and the NHS is in a terrible state with Omicron and all the other chronic illnesses. I am surprised it has not collapsed. We have the same trouble with care homes and people are blocking beds in the hospitals because the care homes cannot take them. There are huge waiting lists as well for all kinds of procedures and illnesses as well. I cannot see the NHS getting the better of it all.
I shall leave it up to the others to tell you what has been going on with them.
You will see that we are supporting Sue who is going through chemotherapy.
That is all for now.
Love and best wishes/
Sylvia xxxx
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Hello Sue,
Thank you for your kind words. We are only too glad to help you through this journey and you will get through it.
It looks as though you are doing all the right things to keep safe.
Have you had the fourth vaccination? Offering it seems to be going very slowly here. There have been some issues about the Pfizer vaccination, but it is still being offered here, along with Moderna.
I was glad to read that you had a fairly uneventful weekend. You said that you have a very low appetite, so just do your best. Remember to keep hydrated and just eat a little at a time throughout the day. Eat some fruit if you can, especially bananas and grapes, as they are very energising. I used to like mashed potatoes done with lots of soya milk and sometimes some soy yoghurt. Anything you can manage is good. The Ensure drink will probably help. It is good that your blood test numbers are in order.
You should congratulate yourself that you have now got through round one of your chemotherapy treatment.
I was glad to read that you are taking charge of your treatment and getting doses limited when you feel that is what is necessary.
Keep telling yourself that you are going to get through this. Keep in touch and let us know how you get on with the once every three weeks chemotherapy regimen. You can do this. Keep reminding us what you are having, because your details are not appearing at the bottom of your posts. I am not sure how you can put them in with all the changes on the format of the forum. I wish it would get back to normal. There was nothing wrong with the format anyway and the present one is not an improvement!
That is about all for now. You will see that Kath from Australia is back posting. She has lots of information when it comes to Covid and vaccinations!
Look after yourself, keep positive and keep looking forward.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for the information about face masks, I hadn't read anything about the microplastics from masks being dangerous. I remember when the serious health risks of asbestos first hit the headlines. I saw several men die at the hospice with misothelioma, many had been plumbers and had no idea of the dangers until the story finally broke. Asbestos is still being found in schools and other public buildings. About two years ago we had a specialist team in to remove asbestos from our roof, the men fitting our new roof downed tools the minute they came across it. Blue and brown asbestos was banned in 1985 and white asbestos in1999, which means that far too many relatively modern buildings are still full of it. I suppose it must be in hospitals too. I'm sorry that you lost an uncle to misothelioma, it's a very distressing condition.
You probably watched yesterday's parliamentary debate. I don't see how Johnson can stay in office now that so many in his own party want him out. War in Ukraine is is no excuse for a Party to accept a liar as leader and backbenchers are, at last, beginning to make their feelings known. Apparently Tory MPs had inboxes overflowing with complaints about the Prime Minister deliberately telling barefaced lies to Parliament. For the first time, the Speaker allowed the word 'liar' to be used in the House. Ian Blackford used it at least four times! The Prime Minister and this dreadful Cabinet must go and the Tories need to listen to the things that concern people most - the NHS and the cost of living crisis are right at the top of the list. I have no idea what can be done about hospital waiting lists. Doctors are being forced to make some very difficult choices and I think that age will be a major factor, though I hope I'm wrong.
Crows make a lot of noise, but are interesting to watch as they seem to have an organised community. They certainly pull together when predators like buzzards are around. It's quite a sight, watching a few crows chasing off a family of buzzards or any bird of prey that invades their territory. Our cats put up with them, probably guessing that they might come off second best.
I had to laugh when you mentioned that it wasn't very sunny inside your mind. I'm afraid it's the same with me. I'm trying to be positive about the future, but it's difficult to find positives at the moment. Covid has left me breathless and exhausted and I can't help thinking that it might be more than Covid. The lump on the upper left side of my back is still there and I'm letting my imagination get the better of me. There's not much I can do unless I pay to see someone privately and I may have to do that just for peace of mind.
The sunny weather continues, though it's quite cool outside. We really need some rain as the garden's very dry.
Take good care of yourself.
Love,
Gill xxx
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Hi Sue,
I'm glad you're finding the thread so useful. It was a lifeline for me and provided the support and information that wasn't being supplied by the breast clinic.
You have a very sensible approach to upcoming treatments. Adjust and adapt, it won't be for long and each treatment means you're so much closer to your goal. Well done for keeping your blood numbers stable, I didn't manage this and my oncologist wasn't pleased. Ensure seems to be working well, which is good to hear - eating might become even more difficult during the next few rounds, just have whatever you feel like at the time.
Omicron seems to be all too easy to catch, so keep on being very cautious, it's maddening that too many people out there are failing to protect the vulnerable. Remember too, that the stronger treatment you're about to have does most of its work in the first round, so if you do need to pause for a short time due to Covid, it won't affect the longer term benefits at all.
Just keep on doing what you are doing.
Love,
Gill xxx
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