Calling all triple negative breast cancer patients in the UK
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Hello to Sylvia and all,
I thought I posted this, but don't see it anywhere so I will try again.
I am having problems with my right arm after chemo. It has been about 3 1/2 weeks since my last treatment. I had carpal tunnel in right wrist before cancer, chemo made it worse. Now I also have carpal tunnel in my left wrist as well. If I do much activity at all, I have excruciating pain that radiates from my entire right arm to my shoulder and back. And now my left arm is hurting too. I think a lot of that is overuse and carpal tunnel. The right arm is a different story. The pain seems to originate in my upper arm and shoulder, if you take out the wrist pain. My oncologist thinks it is nerve pain. She also put me in lymphedema therapy, but the therapist says I don't have lymphedema. My family doc wants an MRI of my spine. I don't know what to think, I just know if I lie around and don't do much, the pain is tolerable. If I have a normal day,and I'm not even talking strenuous, then the pain that comes is just a killer and I am popping pain pills. I do know the oncologist is not moving fast enough for me, she wants me to wait till chemo is out of my system and to do the therapy. What she may not realize is that the therapy causes me intense pain. I am considering stopping it.
I am quite down in the dumps. This is not where I hoped to be right now! Does anyone have any info or encouragement?
Thanks, Mary
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Hello Mary
It was nice to hear from you but I was so sorry to read that you are having trouble with pain from carpal tunnel in both hands. I know that carpal tunnel is often caused by repetitive use of the hands and so sounds a bit like repetitive stress syndrome. It does apparently often occur in both hands and I suppose it is quite likely that chemo may have caused it in your left hand. It is all something to do with nerve compression and I think we all know how painful anything to do with nerves can be. Apparently carpal tunnel syndrome is more common in women than men and occurs most often in women between the ages of 40 and 60. Have you worked with your hands a lot? Typing is bad because it can result in inflammation of the tendons in the wrist.
The pain in your right arm that spreads and is also affecting your back and shoulders sounds really nasty. If you oncologist believes it to be nerve pain what does she suggest to alleviate the pain? If, as the lymphedema specialist believes, your problems with your right arm are not due to lymphedema, did that specialist have any other ideas as to what it might be? I do know that lymphedema affects a lot of women after surgery and that it can come and go for many years afterwards. The specialist usually diagnoses lymphedema by measuring the circumference of the upper arm and then advises on exercise according to the severity. For some they will tell you to wear an elastic sleeve or even a glove type sleeve for the hand and fingers. The most important thing is to find out what it is. I think anything to do with the nerves is difficult to treat and I suppose patients are told to take painkillers as needed. As I have said before, I have peripheral neuropathy in the feet and have been told nothing can be done for it. The oncologist told m that it had been caused by docetaxel (Taxotere). Reading various posts on the forum it seems that patients are suffering a lot from the taxanes with regard to pain (either docetaxel or paclitaxel (Taxol)). I remember reading somewhere that the taxanes were considered hard chemotherapy drugs and drugs such as cyclophosphamide, epirubicin and doxorubicin, lighter drugs. I do not know what the truth is in this. I think we all react differently to everything.
I think you need to get to the bottom of what is causing the pain and if an MRI scan will solve this then it might be worthwhile. At least with an MRI scan there is no radiation involved. Please let us know what you decide and how you get on.
I can understand that you feel your oncologist is not going fast enough. We need to remember oncologists are specialists in the treatment of cancer with chemotherapy drugs, radiotherapy and oral drugs specific for cancer. It could be that you will need to see a different specialist for the pain. If it were me I would not want to be popping painkillers.
i do hope you will be feeling better soon. How is your husband doing?
Thinking of you.
Sylvia xxxx
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Hello again Mary
I decided to look up carpal tunnel on the internet and thought you might like to look at the following link.
http://www.nhs.uk/Conditions/Carpal-tunnel-syndrome/Pages/Causes.aspx
On the whole, I tend to use my excellent medical book as it is much clearer and less complicated. I did read in my book that the swelling from carpal tunnel can be associated with diabetes 1 or 2.
I also read that you can get relief, especially at night, by wearing a wrist splint.
There is also the inevitable steroid injection to relieve the pain. There is also possible surgery to release the pressure and apparently after that there are usually no further symptoms. Your family doctor can probably advise you further with this.
Good luck.
Fond thoughts.
Sylvia xxxx
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Hello everyone
Over the years we have discussed certain products that we have read can help with breast cancer, be it prevention or avoiding recurrence/metastases.
i was wondering how many of you, if any, are still taking anything, be it low dose aspirin, bicarbonate of soda, metformin, green tea, bitter apricot kernels etc. I remember someone mentioning soursop (fruit, tea etc.). It would be interesting to hear from you.
Best wishes.
Sylvia
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Jacqueline, I had FEC 4 on friday and it really was only then that I noticed a change in the size, it's gone from 12 by 12 cms to 9 by 8 so with that news and what Sylvia said you should hold that thought in your head. However there was a lady in the clinic on Friday who told me her tumour did not respond to FEC so they used something else. This is exactly why chemo first is so successful for long term prognosis, as how do we know the chemo post surgery is working on those little microscopic buggers roaming around when there is no palpable way to test it?
As you all know I am obsessed with docetaxol with all the studies I have read, so when I had Doctor day last Thursday I did see another Doc and asked him about it. He said that it was normal procedure when there is lymph node involvement to have 4 FEC and 4 Taxol, so he agreed to it. Apparently you have to take steroids the day before so he prescribed these for me. I know the horrible side affects but I believe it is worth it for the long term. He said he couldn't understand why the consultant onco hadn't had then in the plan in the first place, I said maybe he did as he said 6 to 8 sessions of chemo. Anyway, glad that I can talk confidently somewhat about this. It does help to read up about your illness even when you read the scary stuff. I now just hope that when I see the original doc for chemo 5, that he agrees!
Sylvia, my breast doc said my cancer was called bi-lateral triple negative, I have to admit that in my research I haven't heard of this. But when I asked about having the other one off he said it would be wise. I know what you are saying about studies you have read, but to be honest my breasts are very large and I think it would be hard to match a prosthesis comfortably on the other side. When I come to have reconstruction I would like to have smaller, perky ones
so with all this and for my own peace of mind, I just want them both off. They are too scary! I am used to scars, I have a terrible burn scar on my chin and had to wear a plastic mask on my face for two years. In fact the Doctor who treated me was the same one that Katie Piper had for her acid attack. You can hardly see my face scars anymore, it was very successful. I am going to sign up to that magazine you have recommended.
A question for you all, how long after chemo did you have surgery? I worry that if it's left too long it might grow as I am very doubtful that my lump will get a complete pathological response. I worked out that if I have the 8 sessions I will be finished mid November and was hoping to get surgery before Christmas. This is a question I keep forgetting to ask the professionals.
Centre Parcs was amazing as usual, kids love it, so much to do and we can relax and just watch them go off and play. Might get away the last week of the summer hols again, not sure where yet.
Hope you are all having a good weekend and defo keep away from the sugar!!
God bless you all,
Mary x
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Sylvia, in response to alternative therapies, as you know I am taking the bitter apricot kernels and your advise to spread it out during the day was sensible, because when I take it all at once it does make me dizzy. I have read about the aspirin, but not to take it during chemotherapy due to blood thinning, this is something I will be taking when I am in remission.
Mary, my sister in law had carpal tunnel for repetitive strain and had a small op and it completely alleviated the pain.
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Hi, Sylvia and Marymargarethope,
Sylvia, thanks for the link. I am quite familiar with carpal tunnel, I have already had the surgery on my Right hand years ago. It did recur there some time later. What I didn't know was that chemo can make it worse, specifically the Taxotere can make it worse. And now it's also in my left hand, I presume aggravated by the chemo as well. I did notice in the article that it said Carpal Tunnel can be caused by breast cancer treatment.
As painful as that can be, what worries me more is the pain in my right shoulder and upper arm. It is quite debilitating at times, I am not able to do the things I normally did as a previously very active person. That is, not without a lot of pain, I am supposed to call my family doc back today for a possible MRI. If that shows nothing then it is probably nerve pain. Which may get better slowly, or not. Nobody seems able to answer that question.
My husband is up and down. His kidneys are in a precarious shape. He is probably quite close to going on kidney dialysis. He is holding some extra fluid today, we will have to try to get that off before it gets worse.
Sylvia, so far the oncologist suggested the lymphedema therapy and Advil or Aleve. Those drugs are not strong enough at times. The therapy is very painful to me. And as I said, the therapist said it's not lymphedema. Not yet, anyway. The family doc has prescribed some Neurontin. I had so hoped I would not have to start taking anything like that. I hate taking pills.
I have to stop writing for now. Will talk to you later.
Best to you, Mary
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Hello Marymargarethope
It was nice to hear from you. I do hope all goes well with you when you start your chemotherapy with a taxane drug. I am not clear which one you are going to have. You have said that you were 'obsessed' about docetaxel and then say you are having Taxol. I know that docetaxel is the generic name for Taxotere and that paclitaxel is the generic name for Taxol. As I said, they both belong to the group of chemotherapy drugs known as taxanes. I had docetaxel (Taxotere) which my oncologist told me at the time in 2006 was less harmful on the heart than paclitaxel (Taxol). At the time docetaxel seemed more in use in the UK but things could have changed.
You said you had seen a different doctor to the one you have been seeing, so which doctor will be seeing you through the rest of your chemotherapy treatment? I am assuming when you say doctors that both of these are oncologists. If it were me I would not want two different doctors with different ideas involved in my treatment.
My understanding is that it is standard practice to have chemotherapy before surgery if you have a large tumour. The main reason for this is to make surgery easier by shrinking the tumour. I do not know whether it is standard practice for everyone with node involvement to have chemotherapy but it would seem to make sense. I think a patient is more likely to have chemotherapy if lymph nodes are involved. My information is that a patient is more likely to have chemotherapy if the tumour is large, that is over 2 cms, if the tumour is grade 3 (and most, but not all, triple negative tumours are grade 3). You are also more likely to have chemotherapy if the cancer is HER2+ or if the tumour is triple negative. Younger women under the age of 50 are more likely to have chemotherapy. I would think your general fitness has to be considered.
Looking again at your post I saw that you would be seeing the original doctor for chemotherapy 5. I hope all goes well with him and I cannot see why he would not agree to a taxane chemotherapy drug. If he has a reason you have a right to know that reason.
I was interested to know that you had seen your tumour shrink. Was it measured after each chemotherapy session? Mine was just measured with a ruler after each session, which was a bit primitive. I just focussed on the fact that it was shrinking, but did not expect it to disappear, as small tumours can.
I was interested to read that your doctor had said your cancer was bi-lateral triple negative. I am not a doctor but I think this means that your cancer has triple negative receptors and that the bi-lateral means you are going to have both breasts removed. The medical name for a double mastectomy is a bilateral mastectomy. The kind of breast cancer you have is ILC (invasive lobular carcinoma).
You do not mention in your details whether you had lymph node involvement, so I was just wondering whether you did have it. I had just one node involved, the sentinel node.
I do respect your decision to have both breasts off for peace of mind. I think the surgery we have is a personal choice. I would have chosen a mastectomy over a lumpectomy, even if I had had a choice, but I did not have a choice because my tumour was 6+ cms. I can understand that you want rid of both breasts and to start anew with the reconstruction. I do wish you all the very best with all of this.
I was so sorry to read about the bad burn you have had on your face. That must have been very traumatic.
I do hope some of the women will post to tell you about their experiences with reconstruction. It is not something I ever contemplated, but I know may women do, especially younger ones.
I was glad to know that you had a good time at Centre Parcs.
I was interested to know that you continue to take the bitter apricot kernels. They have been a constant with me, along with decaffeinated green tea. I love both of them. I have taken bicarbonate of soda from time to time but am a bit wary of aspirin and metformin. This weekend someone was singing the praises of soursop and hemp oil to help with cancer.
Wishing you all the very best and keep us posted about what goes on with you.
Fond thoughts.
Sylvia xxxx
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Hello Maryna8
Thank you for your post. I do send you all my sympathy for the pain that you are in and I do hope something can be done to help with it. Perhaps something will result from the MRI scan. It must be making you feel really miserable and I hope something will come up for you. Doctors think painkillers are the answer to everything. It took about eight months here in the UK for my brother to get an MRI scan which proved that he had a meniscus tear in one of his knees that his GP had diagnosed in December 2013 but had refused to refer him for an MRI scan, even though this was the correct procedure and within the BMA guidelines of which his doctor is a member. What a waste of time and months of painkillers. He is just living with it, has had two steroid injections, has been offered surgery with just a 50% success rate. Steroid injections do seem to do the trick when it comes to stopping pain.
I do hope things will get better for your husband. What a terrible time you two are having.
I have had a very sad day today as my friend and neighbour who lives in the same building, died today from her breast cancer. She was about 52 and had triple positive receptors breast cancer. It all started about 2008 and she went through the same treatment as most of us with the addition of Herceptin. About three years ago she had metastases to the spine and then the liver. I saw her a week ago and she was about to go into hospital for the day to remove fluid. She went and she was there for nearly a week, was told they could do no more. I saw her on Saturday at the hospital but she was just sleeping. It just shows you that you have to make the most of every day and also that triple positive is every bit as bad as triple negative. My oncologist told me I was lucky not to be HER2+. There may be Herceptin but it would appear not to be a guarantee.
Take care, Mary.
Fond thoughts.
Sylvia xxxx
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Sylvia - that is a sad story about your friend - definitely shows that even with the drugs there is no guarantee!! I am in survival mode at this time - at a vacation spot on the beach, but still have lots of family around which I find quite stressful - longing for peace and quiet and some me time. However no real complaints - #1daughter had a lovely wedding - just a few more weeks until daughter #2 gets married, then she moves to the states to live for 3 years. Thank God that I do have my health and energy at this time - consistently trying to live in the moment and with intention to embrace each and every day no matter what comes along. Will write again when relatives leave!
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Hello adagio
It was nice to hear from you. I agree with what you said about no guarantees. Thank you for popping in and showing compassion for my friend and neighbour. I feel so sad about her. I saw her sister today and she said that her sister died peacefully, so that is something. I do feel it is so important on this thread that there should be posts showing thought for others and giving needed support.
I do understand your need for a bit of peace and quiet. I can understand how you can get tired with constant company. My husband and I spend a lot of time alone, not having much in the way of family and I can get quite tired in noisy company. I do like meaningful conversations. I also like quite time to read and think.
I was glad to know that your daughter's wedding went well and I am sure that all will go according to plan with wedding number two. It will probably seem too quiet after all the excitement.
I think your philosophy of life is full of common sense. We do not know what is in store for us each and every day and whether there will be a tomorrow, so, as you say, we must embrace the day.
Exmouth is quite mad at the moment with holidaymakers, but fortunately our street is fairly quiet and you would never guess that there is frenzied activity on the seafront just a very short walk from us.
Raymond and I have been busy gardening in the grounds for the past three days. It is peaceful and satisfying to see how nice we make everything look.
Sending fond greetings to you in Canada.
Sylvia xxxx
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Hello linali (Lindsay)
I hope you are safely back from your holiday in the US and that you had a good time. I hope you are ready for your mammogram tomorrow August 21st.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Jacqueline
I hope all is well with you up there in Scotland and that you are recovering well from your third chemo that you had on August 7th.
I think you have a mammogram on August 21st so I hope all goes well tomorrow.
There is not a lot of news from Exmouth and I shall be glad when September 4th comes along and normality resumes as the schools go back.
Fond thoughts.
Sylvia xxxx
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Hello Normandee (Norma)
We have not heard from you in a while so I hope that all is well and that you are just enjoying the summer holidays.
Hello also to Carolben
How are you getting on? We have not heard from you in a while, so I hope no news is good news.
Hello Susaninicking (Susan)
I hope all is well with you and that you are just busy doing exciting things during the summer.
Best wishes to everyone viewing and hoping we shall get more posts.
Sylvia xxxx
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Hi once again. It's been a while since my last posting on this thread, but I thought I would let you know what I read recently. I was just surfing the net, so to speak, and came across an interesting article basically saying that if an er-/pr- patient survived 5 years then those patients may have been 'chosen' to do better long term than their er+/pr+ counterparts. As I saw a consultant the other week, I did ask him if this was the case and he said no, er-/pr- patients always have a higher chance of relapse, but then went on to say that as it had been 15 years since my diagnoses my risk of recurrence was the same as anyone being diagnosed with breast cancer, which is about 12% I believe. He also asked if I wanted a scan for 'restaging' purposes, but I declined. Restaging? I didn't really understand that one! He also mentioned genetic testing, but I have decided against knowing now., My notes have all been archived now, but all in all I am glad I saw him as I felt out of the loop, but now I feel ok.
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Hello Sarahlou50
It is nice to have you back on the thread. I do remember your previous postings and how interesting they were. What stands out in my mind is that you said you are a fifteen year survivor of breast cancer and that is a huge inspiration and motivation to all of us.
I was interested in what you said about what you had read on the internet about those with oestrogen and progesterone negative receptor status and the five year survival statistic. I think it is difficult to be black and white about who survives and who does not. What we have to hang on to is that more women with breast cancer survive than do not survive. Of course I do not know if there are statistics out there to show us which receptor status has the most survivors. I do know that there are tamoxifen failures for those with hormonal positive receptors and we are told that to be triple negative or triple positive means more aggressive breast cancer and a poorer prognosis. Whether that is borne out by statistics I do not know. I just remember being told way back in 2005/2006 that I was lucky not to be HER2 positive as that was very aggressive. Who really knows the outcome in all of this? It is very individual and very unpredictable.
I think the best thing for all of us that have been through breast cancer treatment is to live each day fully and with optimism and not to worry about percentage chances of recurrence. It is much better to live a healthy and active life to the full each day and not to worry about tomorrow.
I have no idea what that consultant meant about re-staging. To most of us staging is what we had on diagnosis according to the size of the tumour etc. and the stages were stage 1, early disease, stage 2, early disease, stage 3 locally advanced breast cancer divided into stages 3a, 3b and 3c, stage 4, metastatic disease. It would have been interesting to ask him what he meant.
I can understand your reluctance to have genetic testing, given that you are fifteen years away from diagnosis. In the UK to qualify for this I think you have to have close relatives who have or had the disease and your age. Much younger women are more likely to be offered genetic testing as with BRCA1 and BRCA2 faulty genes you are more vulnerable to ovarian cancer.
I see from your profile that you do not have details about your HER2 status but I would think you must be HER2- otherwise you might have had problems by now.
It would be so nice if you could stay with us on the thread to inspire and motivate others. I am now 9 years and 2 months from diagnosis and i just live normally.
I have a friend who was diagnosed about 25 years ago now so she was only in her twenties when diagnosed. She told me she had had just a lumpectomy and some rather primitive radiotherapy. I do not think she was given any details about her disease. Are you still seeing a consultant after fifteen years?
Sending you best wishes.
Sylvia xxxx
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Hi Sylvia, sometimes I have to pinch myself and take a step back and ponder! I cannot believe it has been 15 years.... at the time my surgeon (in Bermuda) was not the most optimistic of my chances as I was fairly young and had an aggressive tumour. But all that is behind me now. The last visit I made to a consultant was the first time I had seen anyone since 2006, so I think I was due to see someone, but as I said earlier, my notes had all been archived, so I had to go through all my details again, but I wasn't too sure if he believed me or not! He did look at me with a very sceptical manner at times, not sure why.
I think there are stats to show those with a er/pr positive status do better then those with a er/per negative status and the consultant confirmed this which was contrary to the report I had read on the internet, but do like to think the report on the internet was true due to my diagnosis! I also realise there are fewer stats available for long term survivors, but am unsure of the real reason why. I do live in the UK and was eligible for an HER2 status,but I don't know if the test was available back in 1999, but as I said before, I no longer feel the need now and I don't have children either. So best to let sleeping dogs lie I think.
I think our diagnoses are very similar, but do realise that each diagnosis is very personal and everyone does respond differently to various drugs, etc. Some are luckier than others.
I do like to hear of others who are real long term survivors as it's very inspirational to read and hear, so thank you for telling me about your friend.
Sarah
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Hi Sylvia,
As you know this month has been a busy one and so I will just update you with my goings on.
Firstly I had the Breast Clinic appointment which went OK. I didn't meet the consultant but a registrar who was understanding and listened. My mammo was clear and he did pay attention to all the other bits and pieces.
I have an appointment with an infectious disease consultant, 11th September and then the Pain management consultant on 29th September and fingers crossed they will bring some resolution to my after effects. I do agree about the management of pain and after anything sinister was excluded re pain in my arm and shoulder I prefer to go down the management route. Injections didn't work for me and I didn't like the fuzziness that strong pain medication induced. I find that Tai Chi, meditation and the psychologist help much better.Anyway I feel that the fear that the pain caused was worse than the pain itself and that can be bad at times.
My sister's visit is nearly over and we spent the weekend at Kerry s in Wexford. Oskar came back with us and will stay until his mummy and daddy come down for a wedding on Friday. He gets more adorable and curious each time I see him. I think that I am definitely a doting Grannie.
Last weekend was the Harley Fest and it was a marvellous success. People came from everywhere and I met a man who brought his vintage Harley from Arizona. I think that alot of us that attended are vintage too!
The ride out, in memory of James' wife Marie, on the Sunday was amazing and our dear dear friend from the centre Mary O managed to be there for it. Also we let off balloons dedicated to people important to us .
I was sorry to hear about your friend and neighbour. Whilst away at Kerrys I had a call to say that one of the founders of the centre had passed away. She was an inspiration to me and all of the people at the centre, a deeply spiritual woman. she was one of our " elite Saturday" Tai Chi class. We will miss her so much, her funeral is today in Ennis.
Our holiday to America begins on October 3rd .We will fly to Washington ,stay with Justine, Damians' sister then drive to North Carolina, South Carolina then through Georgia and back to Washington.
I hope that all is well with you. Our weather here has broken and all our glorious cosmos are being blown by the wind and rain. At least it means no watering for a while.
To everyone in treatment I hope that you are as good as you can be and if you can use this place as a support and somewhere that you can be yourself. Your braveness is in getting up each day.
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Hi Sylvia,
Thought I would pop in to say Hello! My mammogram went well - not as sore as I thought, and the results will be sent to the surgeon. After 3rd Chemo I woke up one morning with very sore throat so I called the Cancer Nurse and was asked to attend the hospital that day. I was diagnosed with oral thrush and given an oral suspension to take every morning which cleared it up within a couple of days. After 7-10 days of feeling yuck started to feel better and got out and about more. The weather has not been great with a lot of rain and very cold. I think I am feeling shivery anyway, but the heating is on and I thinke the summer is nearly over.
Marymargaret - I am due my 4th Chemo on Friday (docetaxel) and must remember to take the dreaded steriods. I then see my surgeon and will get the results of the mammogram. I do feel the swelling has reduced again after 3rd session.
We have the Referendum to think about here which I think there is a lot of "don't knows". Who to believe? The main point now is the currency - I don't think you can go independent and then keep the pound which leaves the euro? Then we have the oil reserves - apparantly according to the experts there is only 35 years left! The revenue from the oil could be used to invest in other areas. My heart is telling me vote Yes but my head is saying - stick to what you know!
Sylvia it was interesting to know about the Yew tree - and what a size they grow to! Doing my best with the sugar intake but must keep going, and have changed to decaff green tea, which I try to take twice a day. I also heard about the plastic containers from family in America - I will look into purchasing the book you mentioned.
I am off now to get my monthly massage at the hospital.
Best wishes to everyone on here and keep positive.
Regards
Jacqueline
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Hello Sarahlou50
Thank you for your post. It just goes to show that you cannot always go by what consultants say. You are living proof that you can survive fifteen years despite what the experts say. I was told straight away by my breast cancer consultant that the prognosis was poor and that was even before I had started treatment. I believe I was told that based only on the fact that the cancer was not hormonal and that tamoxifen was no good for me and that after standard treatment of chemotherapy, surgery and radiotherapy, there was no other treatment available. Interestingly my oncologist never said anything like that. Nobody knows really what is going to happen with cancer. There are cases of spontaneous remission but they do not get much publicity. As I have said to you before, you are an inspiration to us all. We must never give up whatever we are told.
I think there is all sorts of information flying around about breast cancer. I have read on this forum that with triple negative your survival rates improve after five years and the further you are away from diagnosis. In my immediate neighbourhood I know two women who had the most common diagnosis of receptor status, which i think is ER+, PR+, HER2-. One of them is now about seven years since diagnosis, and the other with be five years next year. They both had lumpectomies and just radiotherapy. I have one neighbour probably with the same receptor status and who is now about thirteen years since diagnosis. I am not sure what surgery she had as she does not talk about it much, but she had some chemotherapy that had to be stopped and radiotherapy. I know she suffered badly from lymphodema for a while and wore a sleeve. I think she had tamoxifen. Before being diagnosed she had been on HRT for over five years and was convinced this had caused her breast cancer. Of course there is the other neighbour who must be twenty-five years since diagnosis. At the time of my own diagnosis I could not find anyone who had the three negative receptors.
I was interested to know that you had had your treatment in Bermuda. It seems that standard treatment is pretty much the same everywhere.
I was also interested to know that you do not have any children. That seems to be the case for quite a few women who have posted on the forum. When you read about standard risk factors, not having children is always listed as a risk factor, along with having children late. We have to remember that risk factors do not necessarily equate with cause.
Do you do anything in particular to keep yourself fit and healthy? Have you made any changes in your lifestyle since your diagnosis?
Wishing you well.
Fond thoughts
Sylvia xxxx
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Hello linali (Lindsay)
It was nice to hear from you and to read your interesting post.
I was glad to know that your mammogram was clear and that you had a sympathetic consultant to listen to you.
I hope all goes well with your appointments on the 11th and 29th and that you get some satisfaction from them. It is quite difficult getting definite answers from doctors.
I do think that it is better to try to get to the bottom of things, rather than taking painkillers and having steroid injections. They may ease the pain temporarily but all painkillers have nasty side effects and you end up with more pills to deal with the side effects and on it goes! Goodness knows what all this mixture is doing inside the body.
I understand what you mean about alternative ways of dealing with these things. I hear such a lot of good about yoga, massages and meditation and counselling. Although I do not practise any of these I firmly believe there is a connection between the physical and the psychological and that the two need to be treated together as a whole. We all know the well known saying about a healthy mind in a healthy body. We all need to learn to relax and try not to worry too much about the everyday problems that life throws at us. Life is too short. I can now read my body quite easily and feel the sensations going through it if something is making me anxious. It feels as though the sensations go from head to toe.
You have certainly been having a busy time but at least it was all enjoyable for you so I hope you have been feeling good and positive.
I was sorry to hear about your friend who has died. Did she die from cancer? The way she inspired you and others will live on.
As summer ends here at least you have a holiday to look forward to in October.
It is a dreary bank holiday Monday here in Exmouth with well needed rain. The grounds in my apartment complex have been really dry, so this will do them good. I am going to get a bit of shopping in a minute and then i am going to do some reading.
Yesterday in Waterstones I discovered a book on cancer that i have not read and have not seen there before. It is entitled "Radical Remission - Surviving Cancer Against All Odds" by Kelly A Turner PhD. It was in hardback in the bookshop and it is 2014 but i am going to see if I can get it in paperback. I know this book will interest you. I have just been reading some of the pages online and it is really interesting. It is available on Amazon.
At the moment I am reading a book, a novel, in French, various magazines and a book about treating arthritis naturally.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Jacqueline1963
Thank you for your post and for letting us know taht all went well with your mammogram.
I have to go out for a while but i shall write in more detail later on.
Fond thoughts.
Sylvia xxxx
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Hi Sylvie
I do keep myself fit mainly because I have been told I have mild osteopenina (but who doesn't at 50?) and am concerned about osteoporosis as my my mum was diagnosed with that 2 years ago and as I was pushed into menopause early I am definitely at high risk. I run 3 times a week and go to the gym regularly also. I am slim and have a slender frame, which is not a good thing as you get older! I have also stopped eating meat, but this is a new thing for me, not for any other reason than I just don't like it so much now. I do eat a great deal of fish instead.
I made a conscious decision not to make any changes 15 years ago, perhaps because I did not have a good prognosis. I carried on smoking (gave that up 3 years ago), drank alcohol regularly (as I was living an expat lifestyle) and doing everything as I had done.before cancer. Had very little time off work and only rested when I absolutely had to. I did not want chemo to get in the way of anything.. That bolshy attitude did pay off! Now however, I am very keen on using natural products on my face, eating organic food and definitely no smoking. Maybe I grew up!
Sarah
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Hello Jacqueline
I have returned from my shopping, just some groceries, but it does seem to bite into the day. It was pouring down with rain, so my husband Raymond and I got drenched.
I do hope the results from the mammogram will be good. It is strange how at my hospital I am told the results of my mammogram straight away and the same goes for ultrasounds if you have them. Later on it is confirmed in writing.
Chemotherapy often affects the mouth and many women write about sore mouths, dry mouths and ulcerated mouths, so I am not surprised that you had oral thrush, but I was glad to know there was something available to get rid of it. For the rest of your chemotherapy treatment you might want to try warm water rinses with a teaspoon of bicarbonate of soda. What is an oral suspension?
The first week after chemotherapy is usually the worst and then you do start to feel better and can usually carry on fairly normally except you do need to rest a bit. It is just when you are feeling almost normal that you have to have another session.
I know you have been having a lot of cold and rain in Scotland and I am not surprised you have the heating on. Even here in the south-west it has been feeling cool and there have been some really low temperatures at night. The seafront was deserted today.
I do hope all will go well on Friday August 29th when you have you have your fourth chemotherapy. I do hope the docetaxel will not have bad side effects. Some women seem to find docetaxel and paclitaxel very challenging. I was alright on docetaxel but it was on it that my eyebrows and eyelashes disappeared and I had some discolouring of the toenails. It was not until I had finished the treatment that I realised the soles of my feet felt strange and I found out that I had peripheral neuropathy and that the docetaxel had caused it. The neuropathy still bothers me but i have been told there is no cure. I find soaking my feet in warm water with salt and bicarbonate helps a lot, as well as keeping the feet well moisturised.
I was glad to know that you feel the swelling is reducing.
I am following the referendum in Scotland with a lot of interest. There is a lot of news coverage about it here. I do not take much notice of what the English politicians say because they all have there own angle for saying it. I think it is up to the people of Scotland to decide what they want. I can understand that there must be a lot of undecided people. I do hope the maximum number of people get out to vote.
I think there is a lot of scaremongering going on from the English side. As for the currency in an independent Scotland, I cannot see why they should worry, as it seems to me Scotland could adopt the dollar and have a Scottish dollar. After all, we have the Canadian dollar, the Australian dollar, and of course the US dollar. I am not sure what they have in New Zealand.
I do think that in Scotland you have a better health system and a better education system than we have in England. You seem to have a more caring government. I do quite like Alex Salmond and I think he seems a straight forward person. I am not impressed with Alistair Darling and I do not think he was a very good chancellor or was a credit to the Labour Party. I also like Nicola Sturgeon and the way she will not take any nonsense from anyone.
I am quite interested in history and so always think of the fact that Scotland was an independent country before the Act of Union three hundred years ago.
Whatever happens i think that since we have a devolved government in Northern Ireland, Wales and Scotland, we need a devolved government in England. I do like the modern parliament buildings for these places and think we need a modern one for a devolved English government. Westminster needs to be vacated and all the nonsense associated with it abolished. It could be used as a Federal Central government for the devolved ones or else a new modern one should be built and Westminster turned into a museum!
I shall be thinking of you tonight when the second debate takes place.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia et all - whew, that was 3 pages of reading thru the thread to catch up! I'm sorry to have been so scarce, but I just haven't had the energy nor the concentration!
Am still hanging in there, have done 2 cycles of Gemzar/Cisplain, & it's not an easy chemo, like Xeloda was. We're lookking at 6 cycles, but will scan after 3 to see if it's working. It's been hitting my blood counts too, so we've added Neupogen as part of the tx. I have 3 to 4 days of total wipe out (bed to sofa & back) after chemo, which is nasty, the nausea is controlled, but eating feels like a punishment! Been drinking lots of the supplement, Ensure, it goes down ok, and drinking as much water as I can. I'm on my 2nd week of my 2 week break & go back for round 3 on Friday! I'm feeling so much better right now, & trying to really enjoy each day of feeling human! Am very weak & horribly thin, but my light is shining strongly right now.
So I made some notes, else I can't remember, and half of it is now out of date, but lets try:-
MaryMargaret, what beautiful kids you have - cute pic of your baby! I can only imagine chemo & young children, happy you have lots of help!! I had chicken pox for the 2nd time in my early 30's, after having it as a kid - it was not nice. So am pleased you evaded it! And what good news on the shrinkage of your tumor, may it continue this way!!
Maryna58, congrats on finishing chemo!! They gave me rads 'just to make sure' - after chemo rads were easy, just had bad fatigue. I echo Sylvia re aqueous cream, & I was given a mix of cortisone & aqueous cream to use. I had carpal tunnel (long ago) in both hands & had the op on both with instant relief, it used to wake me up at night, so I sympathise! The pain to your shoulder & back sounds sore, I agree that if it's causing you bad discomfort it's worth looking at now. After my 1st chemo & rads I couldn't lift either arm hardly. Left side from fracturing my shoulder a year before bc & then the mastectomy and the right one was an old rotator cuff we figured may have flared because of the positioning with arms above head during rads. I saw a physio who did massage, dry needling, infra red & gave me exercises. Then yoga & swimming sorted the rest out. No problems there now. I hope you can get it resolved soon.
Gill, so glad your (multiple) op went well, hope you heal quickly and enjoy Cypres! I know it's scary hearing/reading of people who get mets, it's just a fact of our lives now that it does happen. But don't lose count of all the women who go into remission for years!! And even with mets, stage 4, I believe women are living longer, better lives. I had Tramadol for a fractured shoulder & it also made me sick to my stomach, yuck!
Linali, YAY for the clear mammo!! Love the idea of the Harley rides - I ride a 125cc scooter, and sometimes I pretend it's a Harley & I sit back & instantly get extra cool!
Sylvia, I'm sorry to hear of the passing of your friend. I think it was in Feb that 3 women I knew died of bc, & as I said to Gill, this is part of our reality now, unfortunately. Loved the pic of the Yew hedge, thought it only grew in South America, for some reason; always learn lots on this thread! We call tangerines "naartjies" here, I find them less acidic than oranges, nice and clean tasting. My son in Israel is fine, but everyone there is taking strain. I just wish they'd stop killing each other over there.
Adagio I'm pleased to hear your daughter's wedding went well, sling & all! And fantastic news that you're all clear!
After trying everything on my mouth sores I find that an oral Nystatin anti biotic clears it up in a few days. I found the salt/baking soda burnt me, so I use Daktarin Gel, Kenalog in oral base & for extreme cases I put on a topical anaesthetic too!
We've had an extremely mild winter, with beautiful sunny days & not much rain. The whales are in the bay & I've been lucky enough to have seen a few. I'm back walking the beach & doing very gentle yoga at home this week. It's just scary how weak I am. Anyway, I keep telling myself it's the chemo making me sick, not the cancer, need to remember that!
Love to all, this is not an easy journey, but lets never lose hope.
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Hello Carolben
It is so nice to see you posting on the thread and I do admire you for taking the trouble to catch up on the posts when I know you are having a tough time. We all understand that you will be lacking in energy and concentration.
I do admire the way you are getting through all this chemotherapy and congratulations on having completed two cycles of Gemzar/Cisplatin. What are the main side effects of these drugs? I do hope you will have good news from the scan after you have completed the third cycle. It must seem an eternity going through all this. I do hope your blood counts will improve.
I do hope as well that you will be able to eat without it feeling like a punishment. At least you are getting nourishment through the Ensure but no doubt this can get boring but at least it will help with energy.
I was glad to know that you are feeling better in the second week of your two week break. I shall be thinking of you on Friday when you go for round three.
It is true that facing possible recurrence and mets is part of all our lives and there is nothing much we can do abut it. Even if we do everything in our power to have a healthy lifestyle there are no guarantees for any of us. We are never out of the woods. It is horrible that after all this time and all the money spent that women are still dying from breast cancer.
I was glad to know you love the picture of the yew tree hedge. It certainly caught my eye when I saw it in the newspaper. I had read some years ago that the yew tree grew in Europe and America and that the two were slightly different, resulting in docetaxel in Europe etc. and paclitaxel in America.
I was interested to know that in South Africa you call tangerines "naartjies". I eat lots of this citrus fruit and they all seem to be mixed up here. We have tangerines, mandarins, clementines and satsumas. I think the labelling gets mixed up, but I like all of them. You are right about them being a lot less acidic than oranges.
I was glad to know that your son is fine. It must be a strain with all that fighting going on. There is so much trouble going on in the world that you get depressed and feel that it is all hopeless.
It is good to know that you are able to go walking on the beach and can do some gentle yoga at home. I agree with you that it is the chemotherapy that is making you weak and not the cancer. These cancer drugs and radiotherapy are lethal but it is all we have and all we have had for too long.
All that you say on this post is very courageous and very inspiring. You are one strong woman and we are all thinking of you and willing you through this.
With fondest thoughts.
Sylvia xxxx
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Hello Sarah
Thank you for your post. I was interested to know that you have mild osteopenia and that you are taking good care of yourself to try to prevent osteoporosis. I think that the cancer treatment certainly does not do our bones any good. I have osteoporosis and I think it was caused mainly by undiagnosed hyperparathyroidism (an over active parathyroid gland). It was discovered by my oncologist when I was diagnosed with breast cancer. A blood test showed high levels of calcium in the blood and I had a bone nuclide scan to make sure the cancer had not spread to the bone. The scan was clear so she did a blood test to find out the level of parathyroid hormone, saw it was high and diagnosed hyperparathyroidism. This leeches calcium from the bones into the blood stream. I later had surgery to cure this. The strange thing is I had no symptoms and not trouble with bones etc. until I had the cancer treatment. I lost some height. I have had two DEXA scans which show osteoporosis. I take good calcium tablets, vitamin D capsules to try to keep this stable. Women do seem to have bone trouble after cancer treatment and those with hormonal breast cancer who go on to take drugs such as Arimidex get osteoporosis. I have a cousin who is 53 and has developed osteoporosis through long time use of steroids for COPD. The medical profession prescribe bisphosphonates for osteoporosis, but they are something i would never take.
I am like you slender and small framed and about 5' 10". I try to get most of my calcium through food but not dairy products, which I avoid like the plague, along with meat. Like you I eat fish but only wild not farmed. I do not drink any alcohol and have not done so for about ten years. I only ever had a little wine. I have never smoked.
I was interested to know that you had lived abroad. I spent three years teaching in Morocco and lived and taught in France for six years. I have also spent seventeen years in Canada with my husband.
I think most of us grow wiser as we go through life and we would need two lives to get everything right.
Wishing you all the best.
Sylvia xxxx
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Carolben - so nice to read your long post - I love how you take notes of previous posts rather than flipping back to see who said what I think I will have to start doing that. Thanks for the idea!! So sorry that your current chemo is not being kind to your body - but you are doing all the right things, and it is good that you can still take walks along the beach even if they are short ones - I find walking on the beach to be a soothing and soul satisfying experience! Plettenberg Bay must be a beautiful spot - I have only been to CapeTown and Stellenbosch, but would love to explore other parts of the Western Cape one day. I wish you the best for your upcoming chemo and pray that you will start feeling a bit stronger so that your body can cope with the assault of all the drugs! I agree with Sylvia that you are a very courageous woman and you are a big inspiration to me and I am sure other women on this site would agree! Thanks for sharing with us!
Next wedding is just 4 weeks away and I will be very glad when it is over. - it has been a very tiring summer. Just took the last of our house guests to the airport, so am enjoying some 'me time'.
Sylvia - I knew you had lived in Canada, but didn't realize it was for 17 years! You have certainly had a lot of life experiences living in different countries. My youngest daughter - the one who is getting married next month is going to live in the USA for 3 years - I will miss her so much, but I know it will be a great experience for her and she will learn lots! We will be true empty nesters and it feels very strange.
Thoughts with all who are going through treatments and I hope you have minimal side effects.
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thanks for your very kind words both Sylvia & Adagio - here's a quote I like, from Viktor Frankl who (I think) was in a concentration camp in WW2 :-
"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone would understand if you fell apart; that's true strength"
I think that applies to us all here. Sure we all have times of feeling like "I just can't do this anymore", and it's good & healthy to cry, rage, rant, fear - express our feelings. But in the long run, what are our options, to give up or to go on. And then we get to choose if we're going on with a victim or victor attitude. I find its so boring being a victim, life is too short not to make the most of what we can. So philosophical, it must have been sparked by the lovely things you said about me!
Sylvia, the se I've experienced so far are nausea, loss of appetite, headaches, constipation, diahorrea, weakness, fatigue, increased frequency of migraines, low wbc, low red cell counts, mouth sores, hair thinning/loss, my existing neuropathy in my left foot feels worse. The potential se can also be flu like symptoms, kidney damage (so have regular kidney function tests), tinnitus and damage to hearing, visual deterioration (usually resolves after chemo). That's all the ones I can think of now, but that's enough. I'm hoping one of the side effects is to blast all those pesky mets to smithereens. Oh, that's the main effect, silly me. If you get chemo brain on top of chemo brain, then I have it to the power of 4 now!! We get all the different citrus, but to us it's lemons, oranges & the rest are all different kinds of naartjies to the average South African, just a funny thing. I agree with Adagio, you certainly have spent time in many different countries, how did that all come about?
I'm pleased I did a lot of traveling, mainly in Europe, then Israel, in the early 70's - the world was a friendlier place then somehow. The only 2 places I would go now are Israel to my son or California to my sister. But it's not a burning desire, if it happens, great, if not I can live with it. After my last trip to Israel, the thought of a long trip far away from my safety net of doctors & pharmacists scares me, quite honestly. But 10 days in the Maldives would be very tempting!! My appetite has just started to improve (2 days before chemo) and am having a last nice meal with a friend tomorrow evening - probably a home made hamburger, sounds good.
Adagio, I remember you saying you were coming down this way, both Cape Town & Stellenbosch are beautiful, this is a lovely part of the world. Am already looking forward to the summer & being able to swim in the ocean, you're right - it does the soul good! It'll be hard to have your youngest daughter far away, I know how that is, but it is a great experience for her. Still another wedding coming up, how great, but I can understand how tiring it must all be. Empty nesting must be a huge change.
Hey Susan, are you still off traveling, or back in Germany? Hope you're doing great!
It's 18h30 & I want to watch Who Wants To Be A Millionaire, then I'm off to sleep. Had half of a huge paw paw (papaya?) with double full cream Greek yoghurt for supper, sometimes I could live off fruit.
I thank you all for being here, thanks to the moderators & everyone that posts, these threads have been an absolute lifeline for me - I just love this whole site!!
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carolben - love the Viktor Frankl quote - you are a shining example of not giving up. Hope you enjoy the hamburger! Sounds delicious.
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