Calling all triple negative breast cancer patients in the UK
Comments
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Hello Barbed,
Thank you for your post. I have just read your last post on the Oesophagus thread and am sorry to read that you are having so many problems. I have been reading in the media that cancer treatment is leaving much to be desired in the UK. There are problems all along the line with long waits for referrals after a diagnosis with a GP, long waits for results, long waits for tests, long waits to begin treatment and so on and so forth. It appears it is even worse for patients with secondary breast cancer.
I am trying to put myself in your situation and to think what I would do. I would not be waiting until December and certainly not until February. If all else fails, turn up at A&E and impress upon them how bad you are feeling and how concerned you are about your state of health. You could also get a referral to a different hospital for a second opinion.
You have every right to know why you have high tumour markers and why you have that pain that kept you awake.
As someone who has had TNBC twice around, you should be getting priority treatment. Where are you exactly in the UK? If you are in London or the South-East, I would think the Marsden hospital is the best place to be.
You are quite right that cancer does not wait for anybody. You need to get this all checked out now.
Good luck and be firm. I think getting yourself noticed helps a lot.
Please keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I really enjoyed reading your PM. We seem to be on the same wavelength for so many things. These are interesting times.
I would love to know what Nigel Farage is up to. We need him here to push through Brexit. The latest thing I have read in the newspaper is that he could be up for a peerage to the House of Lords. I shall be very disappointed in him if he accepts it. That antiquated place should be done away with. It just needs a stroke of the pen. We badly need to get into the twenty-first century in the country.
Yesterday, once again, there was a good column by the Beachcomber in the Daily Express. Have a look at it. I shall leave you to look at it.
http://www.express.co.uk/comment/beachcomber/73308...
How are you feeling these days? I find I need more hours in the day to achieve all I want to do. It is so frustrating.
I have been reading another article in the same newspaper about the influence and benefit of the power of positive thinking and the works of Pastor Norman Vincent Peale whose book launched the Positive Thinking movement. Apparently, as a boy, Donald Trump used to listen to him when he was taken to church by his parents in New York. The article in the Daily Express is entitled Did this positive thinker make Trump president? The article is worth a read. I do like some of the pearls of wisdom from this Pastor, including "Don't take tomorrow to bed with you". You might want to have a look. As you know, I am not religious but I think his best seller written 64 years ago had a lot of truth in it.
I do hope you have a good weekend. I seem to have busy days, and am still trying to find time to have some relaxation, do a bit of reading in French and get started on a book I have just bought, entitled When in French. This afternoon I have spent quite a lot of time proof reading a book a cousin of mine is writing.
That is all for now. Keep up your good work on the thread.
Sylvia xxxx
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Thanks Sylvia,
I hadn't yet written to my GP - I'm going to drop a note in tomorrow (it's been a very odd week) and explain what's been happening.
I think I will also contact the BCN's on Monday (eating this evening was difficult again - suddenly I'm getting a lot of pain and bloating - but it doesn't seem to be from indigestion - more that my food doesn't want to ingested.) BTW - anyone else have to go through the ridiculous telephone screening to talk to a nurse?
I had an appointment for the first week in December but for some reason it has been cancelled and is now the 14th - I can't see myself getting seen much earlier - I will try. I think there is a 2 week wait for urgent cases but with a clinic cancelled? I can't see myself being seen before the appointment I do have. The other rationale for waiting was that by my appointment a month will have passed and they will do my blood test when I go - so we should have a strong indication of what's happening.
i think you're right about the health service - it's so overloaded. The GI appointment for the end of February is supposed to be "urgent".
I always have reservations about A&E - but I will keep it in mind if I am really desperate. I've had fun and games with a lung infection/suspected PE - sat up all night in a chair on their busiest night of the year. They were very kind and kept apologising I had been admitted but they didn't have any beds. When I did get one I was in it for about 40 mins before they decided to send me to another hospital. The next day when I had my scan, 2 junior doctors came and told me about my lung nodule and how I needed to go back and see my oncologist as it had got bigger - I didn't even know I had a lung nodule - that was another 3 months of scans and thinking "that's it then". It's funny now but at the time - these 2 guys bounced up all cheery and said - good news it's not a PE but you're cancer might be Stage 4. They hadn't even heard of TNBC. That wasn't a good day.
I have heard the Marsden's is really good. I thought about changing hospitals when I had finished all my surgery but I have known my surgeon now for nearly 17 years and he persuaded me to stay and he recommended an oncologist. I had thought of moving to Guys as the Head there seems to do a lot of work with TNBC. I might have a re-think on where's best.
I am currently trying to get my records corrected as they claim I've had a chemo that I haven't had and I know that in the US from sites like this - some people get to re-challenge if they have a recurrence. If I need to, I'd like to know that I am able to - especially as it seemed to work for 15 years the first time - perhaps something similar will work again.
Have a good weekend.
Barbed.
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Hi Sylvia and all
I just came back to say hello to all and send my best wishes and prayers to everyone whether in treatment or out of treatment .
Barbed, I read your posts and feel sorry for all the long waits. Despite all the problems we have here, we don't have such long waitings as in cases of any worries , the patient will have all the tests and scans in less than a week or two. I hope you get the best results after these long waitings .
Mary, how are things going in the US ? Some news channels show protests after the election like what we had some years ago . I hope everything goes to the benefits of people there.
Sylvia , my headaches are a bit better. Though I don't want to miss my days of youth, I sometimes wish time passes more quickly to 5 year mark. Though nothing can be granted for ever , my peace of mind may return .
Now I am in a longer than normal break for another class observation and I tried to make the best use of it by coming here and post.
Lots of love
Hanieh
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Hi, Sylvia,
I would think Nigel Farage is home in UK by now, he was here to help Trump bask in election results I think. He is certainly a good speaker, and gave him support when he needed it. He is probably working on the Brexit somewhere, in the background now I suppose. How are the Lords accepted into the House of Lords, and can they be gotten rid of once they are in?
I did read the Beachcomber article, and the one that came before it with Lady Clamydia. He certainly has a wry sense of humor, very funny.
I find myself feeling well these day, to varying degrees. I still have the issue of feeling very well on some days, then overdoing things the next, and then being very worn out the next. One of my books on cancer survivors says that is a common problem caused by chronic fatigue, which is another side effect of cancer treatment. To do better with it I am supposed to do the same things, but take frequent rest breaks, and pace myself. It makes perfect sense, but when I am feeling well all that advice goes out the window and I don't take the breaks. I am better though, I don't have to lie down every afternoon as I used to do. I don't get done everything I want either, it is very frustrating at times; and to wait for someone to come help with something I used to manage myself. I talk to myself all the time, I say Patience, Mary, accept yourself as you are. Sometimes I listen to myself, sometimes I just annoy myself!
I am familiar with Norman Vincent Peale, but have not read much of his work. I googled him and got a whole page of quotes, I found I am familiar with many of them. A good one "It is of practical value to learn to like oneself. Since you must spend so much time with yourself, you might as well get some satisfaction out of the relationship." And "Drop the idea that you are Atlas carrying the world on your shoulders. The world would go on even without you, don't take yourself too seriously." There are many more quotes, most with a grain of humor. I heard someone say that most people naturally think pessimistically, and it takes an effort to be optimistic. I think that is true for me, can't speak for everyone. We did hear quite a lot about positive thinking at the symposium, it does even bring about a different chemical reaction in the body, endorphins I think. I hadn't heard about the Trump connection, interesting.
No wonder your mind is so sharp! Keeping up with different languages is supposed to be very good with that, are you completely fluent in French? Do you know any other languages?
Have a good weekend, I hope you get to relax! I will not, I have to drive today to a surprise birthday party for a friend who is turning 60, it will be noisy for a while!
Talk to you soon, love,
Mary
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HI, Rhonda and Kath,
Glad you are progressing well thru treatment.
Kath, since you had a shoulder injury, that is probably what is causing your pain. I also had a shoulder injury during chemo, and I think chemo enhances anything we have already going on in the body. The good news is it does get better, just takes a little time afterwards.
Rhonda, it seems carboplatin is becoming in common usage now, it was not offered just a few years ago when I was having chemo. I guess I would heed the advice of a trusted physician, if it is that much better. Stopping if you don't like it sounds good too. Usually the docs don't like giving that option.
Best luck to both of you, hope you have smooth sailing from here on!
Talk soon, Mary
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Hello All
I live in a large city with a large public university. There have been daily protest since the election. I do volunteer work at the university and was
trapped by a protest. though peaceful there were so many people. The thing is , there does not seem to be any sign of let up. so interesting to watch. I was a young girl when the civil rights movement was taking place and the unrest about the US involvement in Vietnam. It reminds me of those times.
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Hi, Barbed,
So sorry for all you are going through, you have certainly endured a lot. I would not like to wait that long to be seen either, I hope you can get in sooner. A & E must be what we call ER, for Emergency Room. I used to have to take my husband there quite frequently with breathing issues, we always got in quickly because of the breathing problems. Since you have lung issues, will they not move you to the front of the line if you find it necessary to go there?
I would recommend to go to the best place you can get into for care, I did not follow my own advice when I was diagnosed because I would have had to travel a distance and my husband was ill. Since you are having multiple problems I think you do need some prompt attention, and expert attention. I would try for another place while keeping the appointment you already have. But I understand you like your doctor of 17 years, it is very nice to go to someone who knows your history. I wish you the very best, and I hope you have someone to help you through all this.
I say all this while being in the US, we are still able to get seen pretty quickly for most things. Unless one wants to see a neurologist, for some reason those docs are very hard to get into.
I'll be thinking of you, talk to you again soon,
Mary
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Hi, Hanieh,
Good to see you back! Glad your headaches are better, I wonder if you are like me and plagued by allergies and sinus problems. Somedays my head is very full and stuffy, and I have bad headaches. I am hoping the cold weather will bring some relief. We are cold today, it has been unseasonably warm till now.
You were saying you wish for your 5-year mark, it reminds me of something. When I was going through chemo, it was over the spring and summer of 2014. I would tell my husband over and over, "I just wish this summer was over!" He would say, "Mary, you are wishing your life away." He was so right. It did end, and now he is gone, and so much has changed. Try to enjoy every day the best you can, I know some days are hard. You and I went through our stuff pretty close to the same time, look how far we have come from there!
There have been some protests since the election, I am not affected by the protests personally. I live in the country and they are happening in some of the big cities. Most of the people around here accept election results and move on with their lives.
Do you have any trips coming up? I am going to Aruba in a few weeks, looking forward to that!
Talk to you again soon, Hanieh!
Love, Mary
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Hi Mary ,
I think I may have some sinus and allergy problems too that the doctors can not find. It's getting cold here and I feel better. But we are dealing with a terrible air pollution in Tehran which exists most days and only rainy or windy weather can help us out of it. Unfortunately we don't have much rain here and that's a reason I sometimes envy you and your weather . Just kidding . I always wish my friends the best .
Tonight , when I came back home I realized my daughter is constipated and nauseous again. She still has sinusitis and is taking antibiotics . But the drugs 's leaflets say they can cause diarrhoea . She was better for some days but feels nausea most of the times . Again a reason to worry !
Mary you and me as well as all here should have a lot of wonderful years awaiting us and be sources of inspiration for the others. Exactly the same as what Sylvia is doing here.I'm really sorry about your loss of your husband but hope you have lots wonderful things and trips awaiting you.
Because of my daughter's school , we can not take trips except to the North and my father's villa . I hope she gets better soon . I need your prayers and positive energies .
Love
Hanieh
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hi sylvia
My biggest fear is that they may have missed something in my bones but I keep telling myself small tumourcaught early no lymph involvement and MRI and ct clear. It is not painful just feels weaker on taxol and in all honesty it was probably there before as the injury is old! I think every ache and pain is heightened with this diagnosis tho! I've decided to take one day at a time tho! Get thru my taxol and rads and see how it is after that. I had an ultrasound on it in march just before diagnosis which showed a full thinvkness tear and bursitis so after chemo it needs some physio I think! One day at a time
Cheers
Karh
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Hi Rhonda I'm having weekly tax / carbo for the same reasons as you ( large tun our and good evidence base for pCr) . I'm coming to the end of 9 weekly sessions - 1 more to go.
First 6 were fine, last couple more challenging mainly to do with probs keeping neutrophils and platelets up but have managed to avoid missing any treatment. Had an MRI scan after 3 sessions and tumour size was 2 mm ( originally was 41 mm) so am pleased with that. Sure grey will of course confirm it.
I've used cold mitts/ boots for these sessions and haven't had any probs with peripheral neuropathy so far
Hope this helps
Chris xx
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Hi Chris,
It's good to know you are almost done and have no neuropathy and a great response to the chemo.I will be getting 12 weekly treatments and Sloan supports icing which is good.Do they give you anything for keeping your counts up?My doctor said she would give me something but I am not sure what it is.
Thonda
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Hi Rhonda
Yes I get 3 days of filgrastim injections after each session and this has helped to keep my wcc up. Think in the US you get offered Neulasta instead but it does the same thing.
Have tried to keep Hb and platelets up by eating well and so far I seem to have scraped by ok ( fingers crossed).
Good luck hun
Chris xx
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Good Morning Everyone,
I wanted to check in to say that I'm still reading the thread, still working, and still recovering from my last chemo on Nov 1. According to the doctors, I'm doing well, though the last one really took the energy out from under me. The fatigue is really hanging on, as is to be expected, I suppose. Also, I got some kind of clot from the AC that has made my forearm very tender and painful. It's not serious, but I'm more than ready to improve a little every day.
The schedulers at the hospital got the idea that my surgery was elective, and so only this week put me on the calendar for a Fri, Dec 2 surgery. The idea is to have a bilateral mastectomy, but the reconstruction details are very up in the air. I have to meet with the PS on that Mon to explore my options, and with the GS sometime that week as well. So far my care has been excellent, but I'm finally seeing the "HMO effect" with how difficult it has been to get a surgery date.
Another surprise to me was that my facility does not prefer to place expanders if you are scheduled for radiation. Since I won't know if I need radiation until my initial surgery, that means I may only have expanders placed in my non-cancerous breast, or that I may delay all reconstruction until after the pathology report comes in.
Everything is moving pretty quickly now. I also heard from Nordstrom to schedule a fitting for the post-surgical camisoles and the bras that my coverage allows. I also have to order the things that I'll need for home, post-surgery. Other than that, I was able to rent a house near the mountains with my husband for a couple of days recently. I've also started, Anticancer: A New Way of Life , by David Servan-Schreiber, which is absolutely fascinating.
I think my privacy settings were preventing the detail from showing on my signature. Hopefully that's sorted now. I wish I could keep up more often, but I l do look forward to reading everyone's updates here. Cheers, Pam
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Hi, Pam,
Glad you are finished with chemo, and it's very normal to feel fatigued. Sorry about the painful clot. I was given a port immediately after finding out I needed chemo, and thought everyone did. I am finding out that is not so. I didn't have reconstruction, but I know there are different methods of doing it, and different timeframes depending on your situation. Sounds like you have a great team working with you, and they will know best, so glad you have excellent care!
I have the book too, Anti-Cancer: A New Way of Life, I think it's really good. I bought a few books on post-cancer care, and it is one of my favorites.
Carry on, Pam, so glad you have the chemo behind you!
Talk later, Mary
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Thanks Mary,
Taking Sylvia's advice - I dropped a note in at my GP's yesterday with my latest blood test results.
I have also rung this morning - as last time I did this they got back about 2 weeks later. So my main GP is on emergency calls this afternoon so I will have to ring back then. I have asked him to contact the oncology team to try adn get me seen a bit sooner. I also rang the Breast Care Nurses. We have a vetting system - so you have to explain what's wrong on the phone and hope they think it's serious enough to call back quickly - they say they will try and call back in 24 hours.
It's not just the waiting - I find here (UK) now that you are made to feel like you are imagining it (hence why I went for my own blood test). I hate that you have to convince someone that you are quite convinced you are getting sick enough to see your oncologist. What does it take - barium swallow test to confirm I have a swallowing problem and it's not imagined and a tumour marker test which is high and has been rising and indicative of having cancer? That's before the fatigue - rib pain - loss of weight.
Why doesn't it seem enough?
NHS in the UK.
I think you are right Sylvia about what it says in the media - and statistically we have the worst survival rates in Europe. It's so wrong.
I shall continue to be proactive and try not to be such a misery - I just hate these bits - trying to convince someone your worries are real.
The sun needs to come out and cheer us up.
Barbed.
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Hello Barbed,
I do hope you will be able to get better treated at your hospital.
From your notes I saw that you had surgery at the end of December 2015, so surely you should be going through regular appointments for check ups and have access to a dedicated breast cancer care nurse. It is hard to know what is going on these days with the NHS because it is so underfunded and overwhelmed with demand. We are supposed to be a National Health Service, not an International one treating the world. I had a dedicated breast cancer nurse who was very helpful. I used to phone straight through to her, leave a message, and if there was no reply, she would always get back to me.
I cannot believe that it takes two weeks for urgent cases. That is plain ridiculous!
It is not good enough that you are having to wait until December 14th for an appointment, have your blood test then, and then you will be waiting for the results of that.
You should not be kept waiting for a GI appointment when you are having so much discomfort. That is three months away and you have no idea what is wrong.
I can understand your reservations about A&E, but it is better than waiting months on end.
I cannot believe what you have been put through. I think if that were me I would be shouting 'negligence'!
I am wondering which hospital you attend? Nothing seems to be working. Bart's had a good reputation but I have no idea what it is like now.
I am puzzled as to how they can have wrong records about what chemotherapy you have had. Looking at your chart, the first time around you had AC (doxorubicin and cyclophosphamide). I noticed tat you did not have a taxane drug the first time around, either docetaxel (Taxotere) or paclitaxel (Taxol). I am wondering whether it was not available at the time as the taxanes drugs are said to be very effective against TNBC. I know when I had it (docetaxel) in 2006, I got the impression it was quite new. I noticed that when you had a recurrence in the same right breast you then had docetaxel (Taxotere) followed by a mastectomy of that right breast, and that you had it both before and after surgery. Following that you had a prophylactic mastectomy of the left breast.
What was the surgery that you had on December 31st 2015? Was it reconstruction or was it for a problem with the prophylactic mastectomy surgery?
Have you been having regular appointments for check ups after that last surgery through 2016? Since your last cancer surgery was in 2014, you should be having check ups. After that last chemotherapy you should have started check ups, usually just physical ones, alternating between your breast cancer surgeon and your oncologist. After a few years it should go to the same pattern every six months and then onto once a year. At least that was how it was for me.
It seems to be that there is only so much of a chemotherapy drug that you can use. You have had the Taxotere twice so I do not know whether that is what they do not want to give you now, but I am sure there must be something else.
Remember to be your own best advocate for your body. Be affirmative, be polite, and not aggressive.
Wishing you all the very best.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I do so want you to keep in touch.
I was glad to know your headaches are not as bad.
Please do not go wishing your life away. Make the most of every day.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post.
I agree Nigel Farage is a good speaker and he has been much maligned in this country.
I think the House of Lords should be abolished. I do not agree with people having titles and the House of Lords should have no place in a democratic society. A lot of the Lords is packed with people who have been put there by retiring or resigning party leaders. Would you believe there are more people in the House of Lords than in the House of commons and some of them are really old. The Lib Dems in the House of Lords are trying to sabotage Brexit. A lot of them do not even attend but are earning big bucks. When you seem them on the television most of them are nodding off!!
I was glad to know you read the Beachcomber article.
I agree with you about chronic fatigue and it is best to pace yourself.
I was most interested in the quotes by Norman Vincent Peale that you put in your post. I think they all make sense. Some were fresh in my mind because they were in the newspaper article that I read. We might as well be optimists because pessimism serves no purpose.
I have plenty of energy and like to be active. Raymond and I have spent hours this past weekend sweeping up leaves in our complex and on the pavement and road in front of it. I felt so much better.
I am fluent in French but do not have much opportunity to speak it now. I also know Spanish, but am a bit rusty now.
This weekend we decided to put the laptop away and have some quiet time.
This Monday I am back to being busy. I am trying to catch up on the posts and I must spend some time proof reading a book one of my cousins is writing. She so wanted me to do it. In fact I am quite enjoying it.
I also need to fit in some reading of my own.
What are you doing for your Thanksgiving Day?
Take care.
Fond thoughts.
Sylvia xxxx
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Hello All,
Just dropping by to say hi.
Hope everyone is ok.
It is Day 18 since my chemo. I feel fine except for some itchiness and mouthsores, but both seem to be subsiding now. My body seem to have responded from the 3-day Filgrastim shotsgiven to me to stabilize my wbc. The Rbc however, is still low. Been taking iberet tabs and eating iron-rich food for it. I hope my rbc increases in time for the next chemo infusion. The antibiotic and antifungal meds seemed to have finally worked against the mouthsores or maybe it was in combination with filgrastim, which made them effective against infections. The loratidine given to me also seems to have stopped the body itchiness.
Day 17, i started to shed some hair but not in clumps yet. I felt a tingly sensation on my scalp before the shedding began. I got a short barber's cut in anticipation for the massive hair fall.
My next FEC infusion will be on Nov. 25. The 21-day cycle is suppose to be on the 24th but my MO's sched at the hospital falls on the 25th and she says the one day delay is acceptable, even up to a week. Any comment on this?
I admit that i havent read much of the previous posts and i apologize if i missed a post intended for me. I was busy for the last two days attending to some personal matters. I will try to browse thru the thread as soon as possible.
My positive thoughts and prayers are always with you ladies. Wish you all good luck and God bless.
Gina
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Sylvia and all,
I was looking over the latest Chris Woollam's post: he references the Ultimate Health Symposium I attended in October, and provides a link with times for viewing. This is great, I hope some of you who are interested can pick it up.
https://go.thetruthaboutcancer.com/uls/?gl=582843138&a_aid=55b1c500a3d65&a_bid=60c3cabd
Mary
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Sylvia and all,
Chris Woollams also posts a page about TNBC specifically.
http://www.canceractive.com/cancer-active-page-link.aspx?n=3642
Mary
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Hi Sylvia,
For now - I'll just say it's a major London hospital.
Yes - the mix up with my chemo records is becasue they amalgamated their services into one hospital a few years back and just assumed I had Fluorouracil when I didn't - I believe they have lost my records. I've complained through PALS but it still hasn't been corrected. Because of the lack of chemo options for TNBC I want to make sure that it's available to me - this time round has been classed as a new primary and so technically I should be entitled to 2 different chemo regimes. I learnt form this site sometimes people have got re-challenges. They tried to say I had "failed" on my chemo - 15 years - come on? I know people try CMF and FEC - which would get around the problem of having Doxorubicin again - which they wouldn't do. I was supposed to have Taxol but becasue my veins were so bad and my cancer so aggressive they didn't want to wait to put a port in. I started chemo and hadn't even had all my staging scans - that was reassuring!
My treatment 2014/2015 was rather 'difficult' to say the least. I don't think they had Taxotere in 1999 - which is why I didn't have it then. This time it seemed that it wasn't or had stopped working (cancer is a learning journey - who knew about chemo-resistance?) - so it was stopped after 4 rounds (They should have done an MRI to check and didn't.). I then had Mx and becasue they decided it had worked better than they first thought went through a horrible time as my surgeon wanted me to have more chemo and my then oncologist said he didn't think it would make any difference. He was really horrible about it and made me beg to have the last 2 rounds - I mean it. (I asked to change after that.)
My surgery in December was for my seroma (another fun journey) - I had it operated on before but it reformed and made wearing a bra awful (I've given up trying now) as I was conscious that I was getting lymphodema under my arms.
I usually get seen by my oncologist every 3 months. I am considered "high risk" for a recurrence (though not BRACA). This time she wanted to leave a longer gap (4 months) becasue my CA 15-3 had risen a lot (100%) but was still borderline and I believe she wanted to make sure it was rising: "watchful waiting". If I had just gone back last month and there wasn't much of a difference they still would not have enough information to make a decision. My July Bone Scan was clear. But having developed a swallowing problem and pain in my chest/ribs etc. since then, I could not stand the waiting anymore last week and went for my own blood test. It was high. I know it was a different lab (i know that is important) but it's enough to know that my tumour markers are consistently heading in the wrong direction.
A barium swallow test in September showed there is a problem - one of my GPs (they job share) was dismissing it as a risk of cancer - though I felt differently and she has been booking me down the GI line though a junior GP I had seen first had written to my oncologist to make them aware.
I didn't realise at the time that a "swallowing problem" is a symptom of regional recurrence. I happened - first upon a post by Coopdizzle - and then woke up one morning and just thought "regional recurrence" and there it was. But that alone isn't enough to spook me - I have terrible fatigue and whilst I did need to lose weight, have never found it so easy. I had given up drinking months ago and I have a really healthy diet but I just keep feeling more tired and washed out. And now I smell too. I had that before my diagnosis in 2014 - a really bad acrid/sweet smell.
I've just heard form my main GP - who is the practice manager and he is now going to try and get me into the oncologist asap. and agrees that this needs investigating to find out what's happening.
I don't know if it's the same everywhere - but gone are the days of dedicated BCNs - you do have a named one. I remember having one lady who looked after me and once waited 6 hours after I had got a problem mammogram result and she waited with me for the radiography oncologist to come from Stoke Mandeville back to London to see me and do an US and give me the all clear.
The hospital had serious problems with their BCNs and no one answering the phone and/or getting back and we were told to go to A&E whilst on chemo if we had problems. So they introduced a call screening service - supposedly run by nurses. You have to tell them what's wrong and they triage the phone calls. They say they will get back within 24 hours. I rang this morning... still waiting.
Well I have done what I can.
You right, you really need to be your own advocate and be proactive about your health.
Barbed.
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Hello Kath and Chris,
I was glad to know that you are both still doing alright on your chemotherapy journey.
Kath, you probably need to get through your Taxol treatment. I have written on my notebook that you finish your treatments on January 12th. That is not too far away. When you have finished you can deal with the shoulder problem.
Are you going to have to have radiotherapy?
Keep posting with the dates of your weekly chemotherapy so that we can keep up to date.
Chris, I was glad to know all is not too bad with your chemotherapy sessions. I have noted that you have two sessions to go. Keep us up to date weekly so that we can get your through this.
Have you any special comments on the additional carboplatin? What benefits do you think it is giving you?
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
Can you remind me how you are doing on your chemotherapy journey? I know that you are having AC + Taxol and that you started the AC on October 5th. How many treatments have you had now?
Are you still managing to do your walking?
Fond thoughts.
Sylvia xxxx
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Hello Val,
Thank you for your post.
I was interested to know that you live in a large city that has a large public university. That must be very useful.
I have been watching the protests since the Presidential election and I got the impression that it was mainly young people that were protesting. Like you, I am addicted to all the news, politics, current affairs etc.
Whatever one thinks of Donald Trump, he did win the election through the system that has been in place for ever. I mean the Electoral College. I do not remember this system being questioned before and I do think that adding up the popular votes is more democratic. I think Hillary Clinton lost that election because of so much mistrust and thos enigmatic emails.
Ordinary people are fed up to the teeth with the establishment and politicians and are lashing out at them.
We have the same problems going on here with the EU referendum. The Leave side won, but the Remain side will not accept the will of the people and are doing everything they can to sabotage a democratic vote.
As for our voting system, it is not at all democratic and David Cameron was able to be Prime Minister on 28% of the vote! That is plain silly. We need one man one vote, but the way our system works you can have a smaller party, such as UKIP, which got about 4 million votes and ended up with one seat!!!
What kind of volunteer work do you do at the university?
It is true that these protests do remind one of the civil rights movements and the unrest about US involvement in the Vietnam war.
I lived in France in 1968 when they had their popular uprising, started by the students and joined by the workers. I was a teacher there at the time and the teachers were mixed up with it as well. I was working in Morocco as a teacher in 1971 when there was a military coup against the King. That was rather frightening.
We are living in troubled times and there is no knowing what will happen.
Keep well.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your interesting post. I have run out of time and energy for today, so I shall answer tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
Thank you for your post. I was glad to know you are doing pretty well on chemotherapy. I shall do a more detailed post tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I shall look at the links tomorrow. Have you just had an email from Chris Woollams? I tried some weeks back to rejoin the newsletter, but nothing seems to be coming through. I have just tried again.
Thinking of you.
Best wishes.
Sylvia xxxx
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