Calling all triple negative breast cancer patients in the UK
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Hello Sylvia and all
I haven't posted for a while as life has seemed very busy and unfortunately I have had a rotten cold all week so have been feeling under the weather. I was worried that this might impact significantly on my neutrophils ( which were already low) and so delay chemo but fortunately that wasn't the case and I went ahead with my weekly carbo / paclitaxel this week as usual. This means I now have only 2 sessions to go! I'm so keen to stay well so that there is no reason to delay and I can get onto the next phase of treatment.
Kath - I have used cold mitts through my treatment and have had no problems with peripheral neuropathy - might you ask your treatment centre to try that?
Amanda - I was fascinated to hear about your use of coconut oil ( solid) as a use in your mouth - forgive the slightly odd question but how do you use it? Do you dissolve it in something first?
Best wishes to you all for a relaxing weekend
Chris xx
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hi Sylvia
Toothache has settled and pins and needles not as bad. ALT continues to minimally rise but oncologist feels that it is related to taxol and not too worried. Think my anxiety is the worst. Get better but my shoulder continues to give me a little bit a problem where I tore mot rotator cuff a couple of years. Ago and I continue to find lumps and bumps everywhere. Logically I know this should be the case with a 16 kg weight loss and I still have good movement in my shoulder just feels strange and a bit weaker in the area I injured after chemo. Just have the fear that I won't get a break. Still one day and 1 treatment at a time. I'm off to Sydney tomorrow for a couple of days for work then back there in a fortnight to see my so no graduate as a fireman! Sooooo proud of my boy! He has wanted this all his life. Hope everone ishaving a good weekend and so sorry to be such an anxious Annie! I read the post from you women and im awe
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Hello Sylvia, Mary and all.
I had my post treatment consultation with oncologist a couple of days ago. Although I knew I'd had a partial response to neo-adjuvant chemo (50-60%) and the surgeon had done great work with my lumpectomy ( all cancer was removed) I was very surprised to be told I didn't have to be seen again for a year- (and this will be with my surgeon next July). I had expected that having grade iii TNBC I'd need to have 3-6 month follow-up for the next year or so!
I did query it with the oncologist and she was pretty clear that I did not need to be seen more often. I was told though that if I had symptoms of secondaries I was just to contact the breast cancer team.
So a couple of days on I think I'm starting to get my head round it - I don't have cancer anymore!
I'm so very grateful and I feel blessed but it almost seems to good to be true. It will take me a while to really believe this.
Meantime I thought I'd let you know invade I stop posting. I wish everyone the very best and want you to know that I'm so thankful for the site and for your support.
God Bless
Maggie
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Congrats Maggie! I wish you a cancer-free future. Just be careful with your nutrition. More anti mutagenic foods, especially veggies and fruits, lots of sunshine and exercise and a stress-free environment , if possible. I think we have another future survivor in the making.
Best of luck,
gmmiph
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Hello Chris,
It was nice to hear from you. I hope you are feeling better after having had a nasty cold. It was good news that your chemotherapy did not have to be delayed. You must be feeling relieved that you did not have to delay your chemotherapy treatment. With just two more sessions to go with the weekly carboplatin paclitaxel your chemotherapy journey will soon be over.
I noticed that you asked about solid coconut oil. I am also using solid coconut oil in the mouth. Once it goes into your mouth it quickly becomes liquid and it is easy to swish around the mouth. This is because the temperature in the mouth is above 25C. I use it after cleaning my teeth and give it a good swish around. It does make your mouth feel very refreshed.
Keep up the good work with the chemotherapy.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I hope all goes well in Sydney with your work visit and the trip to see your son graduate as a fireman will be something to look forward to.
Have you worked out the date for your last Taxol?
Keep well and stop worrying.
Fond thoughts.
Sylvia xxxx
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Hello Maggie,
I do hope all will continue to go well for you. It is true that the best way to monitor yourself when all treatment has finished is to look for anything inside or outside of your body that you feel is not normal.
Hospitals seem to vary with post-treatment care and it could be that in the UK they are cutting down. I was seen every three months for the first few years, alternating between the oncologist and the breast cancer surgeon. That then went to every six months, again alternating, and after a few more years to once a year with the oncologist and at that point I was discharged with the breast cancer surgeon. I continued with yearly check ups with the oncologist until I was ten years from diagnosis. The check ups were just physical ones. I had mammograms every three years.
Wishing you all the best.
Sylvia xxxx
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Hello Lamis,
Thank you for your PM.
With reference to your choice of chemotherapy for your mother, I would not think there is a lot of difference in the choice. The FEC (fluorouracil, epirubicin, cyclophosphamide) is a very common regimen for the first months of chemotherapy, and then there is a taxane drug. This can be docetaxel (Taxotere) or paclitaxel (Taxol). These drugs originally came from the yew tree and when I was going through treatment docetaxel seemed to be more common in the UK and Europe and paclitaxel in North America. This seemed to be because of the different yew trees on these two continents. I do not know how they source the chemicals now.
Judging by the women on the thread going through chemotherapy now, they all seem to be having weekly paclitaxel as psrt of their regimen.
If you look at the various posts you will see that Kath in Australia is going through the second part of her chemotherapy and is on weekly Taxol. ChrisAsh is on weekly Taxol with carboplatin and has two session to go. Clauclau (Claudia) was to have Taxol but we have not heard from her in a while so I do not know what is going on. Lilyp6 (Pam) from the US also had Taxol and carboplatin but finished recently. Rlk58 (Rhonda) will also be doing Taxol.
I cannot find anyone on recent posts that are doing Taxotere.
When I was going through treatment I did three months of EC and then three months of Taxotere every three weeks. At the time my oncologist told me that Taxotere was less harmful on the heart.
With reference to Taxol, women on the thread have said they find doing Taxol on a weekly basis easier than doing it every three weeks.
The chemotherapy regimens do very that much. The taxanes can cause peripheral neuropathy, most commonly in the hands or feet. I developed it in the feet and my oncologist said it was the Taxotere that had caused it and I would assume it is the same with Taxol. Women on the thread try to avoid this by icing their hands and feet during the chemotherapy session.
The common regimens seem to be
FEC plus T
EC plus T
AC plus T
Now carboplatin is often added but I do not know why some women get this and others do not.
The most common type of cancer is invasive ductal carcinoma (IDC) which is used to describe cancers of no particular type but there are less common types of breast cancer. Judging from the posts this does not seem to make much difference with the chemotherapy treatment.
I do hope this helps and that all will go well with your mother.
Fond thoughts.
Sylvia xxxx
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hi Sylvia
Last taxol
Due on 12th Jan lay in a hot bath after the flight from hell looking at Sydney harbour thru my windowi.
Try very hard not to worry but keep seeing stuff which I try not to read because everyone has a different cancer journey! Shoulder that I injured remains a bit sore and achy at about 3rd day of taxol so hopefully just arthritic. Peripheral neuropathy settling I think ( hope) and dose 4 0f taxol this Friday coming
Cheerskat
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Hello Mary,
I saw this in one of the papers this week and given what is going on in your country as well as ours, I thought you might appreciate it.
http://www.express.co.uk/comment/beachcomber/730950/Beachcomber-99-years-old-thinking-of-walls
What do you think about the election of Donald Trump? It did not really surprise me because I think that ordinary Americans are just as fed up with the establishment and politicians as we are.
I do wish that here they would carry out the wishes of the people about the referendum.
I hope all is well with you.
Love.
Sylvia xxxx
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Hello Kath,
I was glad to know you had arrived safely in Sydney.
If I were you I would keep looking forward to January 12th when you chemotherapy will come to an end. I would also stop reading any negative frightening information about TNBC. You are getting through your journey and that is all you need to focus on.
Let us know how dose 4 of Taxol goes on Friday.
Take care of yourself as, remember chemotherapy drugs are cumulative.
You can do this. We all have.
Fond thoughts.
Sylvia xxxx
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Sylvia,
I read the article you linked to, by Beachcomber, it's hilarious! I wonder how long it took him to come up with all that, really clever. And yes, it's pretty obvious who he is referring to, Donald Trump is famous for talking about building a big wall; and Beachcomber was referring to the Brexit referendum as well. A lot of people here are comparing the two events too, do you think those who govern us will change their behavior? Personally, I would be surprised if it's a physical wall he will build, I think it probably means stricter scrutiny of illegal immigration. But the truth is, I have no idea what will happen! And what is going on with Brexit, are they just dragging their feet and hoping people forget about it?
Yes, the losing party (and the talking heads in the media) have been so puzzled all week, they can't figure out how they lost, they thought Trump would get squashed. As you said, it's because they don't care what the people think, we are supposed to be a representative republic, and our representatives haven't been representing us very well. If it was possible, it wouldn't have surprised me to see all the incumbents get swept out, but that doesn't happen. Donald Trump came in as an outsider, and a plain-talker who often put his foot in his mouth; but it didn't matter much. People have heard too many smooth talking politicians who go to Washington DC and work on making themselves rich and powerful, and there are still plenty of those around.
My state also elected a man for Governor, the state's highest office, who has never held office before. He has been a Navy Seal. Have no idea what to expect there either!
I am glad the election is over, but I don't think this will be a peaceful few years. At least my phone won't be ringing constantly with people asking for money!
Talk to you soon
Love, Mary
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Thanks for your warm wishes gimmiph and Mary, I wish you both the very best and I'll try and keep in touch with updates. Take care xxxx maggi
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thanks Slyvia
Try hard. Conference hard work today u are right effectscare cumulative. Liver area very tender and rotator cuff sir! Think I may have overdid it a tad! Time for a hot bath and a relaxing boo
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Hello Sylvia,
Thank you for your feedback,
We decided to go with the weekly Taxol and my mother will start her first chemo next Wednesday Nov 23.
Regards,
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Dear Sylvia, Mary and all,
Just popping in to say hi. I see some old friends paying you a visit. You've gone a long way on this thread. Nothing much to talk about me, still feeling normal except for a few not so painful mouth sores. I used lukewarm water and salt yesterday. Today, Colgate Plax Mouthwash (non alcoholic), and I also bought baking soda. I will alternate them and see what happens. I also read that turmeric might also be helpful. I'll use it if the others dont work for me.
Hope everthing's fine with all of you. As you can see, I am just goofing off from thread to thread so as not to get bored. Trying to stay positive and always looking for ways to make me and others laugh.
Until next time, Take care,
Gina
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Hello Mary, Kath, Gina and Lamis,
Thank you for your posts and I shall answer later on today.
Mary, I really enjoyed your post and it is so good to focus on something other than breast cancer. I see you have Nigel Farage on a visit. I shall talk more later.
Keep going, Kath. You will get there.
Hello Lamis, and a warm welcome to our thread. I have noted the date when your mother starts her weekly Taxol and we shall all be thinking of her.
Hello Gina, Thank you for your post. Sore mouths are very common with chemotherapy treatment. You are taking the right things to try to ease the soreness. There are special products, brand name Biotene, which were made especially for these problems. You can get mouth rinse, toothpaste, even a special chewing gum. I used them during my treatment.
I do not post too much outside of the thread because I try to get to know people well and not define them through their breast cancer.
I am deeply sad about CockerSpaniel and hope orthodox treatment can help her. There is always alternative treatment to try. By the way, complementary medicine is not the same as alternative medicine.
I shall talk to everyone in more detail later.
Best wishes.
Sylvia xxxx
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Hello all
so much to tell but nothing specific. I've been back walking, window shopping, crocheting and getting ready for a craft bazaar that I will be able to display and sell some of my dolls. So much fun. Though it's a serious thing this election in the States, I welcome the distraction. I'm a news junkie, both print and television, so i've been quite occupied.
I'm doing as well as expected. the lack of energy and stamina is hard for me. I know I have to give myself time, but it seems like it's dragging on.
Val
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HI, Valstim,
I am so glad you are doing better, and looking forward to the craft show. You probably have a hard time letting go of some of the dolls! You have a great talent there, knowing how to do the needlework. My grandma tried to teach me embroidery etc. but I would not sit still for it, my loss. Although I don't think I have the knack.
I know how you feel about the energy and stamina, I am working on that too. It's frustrating to not be able to operate as we used to, but you will get back there. You had a rough blow with the stroke on top of the cancer/chemo recovery, it will take time but you are better every day! Sometimes it's just hard to see the progress in ourselves.
The election was a long slog, I am so glad it's over. I think life must be good for a political junkie these days, always something going on. I didn't watch the campaign on TV much, I get most of my news from the internet, there seem to be many different views to see there. And I can look at most of the newspapers there as well.
Keep on keeping on! You are doing so well!
Talk to you soon,
Mary
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Hello Mary,
We are living in interesting times. I think Donald Trump got elected as the anti-establishment candidate, the fact that he was not a politician and that he does want to do good things for the American people, especially for those living in the ghost towns of de-industrialisation. I think he wants to do good for America but will he be allowed to do it?
In the UK I think Brexit won the referendum on the anti-establishment ticket as well and that there were giving the politicians and all the haves a kick up the proverbial butt! The people that voted Brexit were from mixed political parties and that they were sick of their MPs ignoring them and not representing their views. Labour party supporters and members did not support the party's Remain policy.
I am now wondering whether we shall ever get Brexit. I think the people were led up the garden path. David Cameron offered the referendum as a pledge in his manifesto before the last General Election, in order to win the election, because the other parties were against. He also wanted to take votes from Nigel Farage's UKIP. Cameron did not think the Brexit side would win.
There is so much messing around now because Cameron tokk the coward's way out and resigned and now we have Theresa May leading the way when she has not been elected by the people. We need a General Election.
As for Hillary Clinton, I do not think she deserved to win and I do not think she cares about ordinary people. All she wanted, to satisfy her ego, was to be the first woman President in the US. I think it quite likely that under her it would not have taken long to start WW3.
I do hope Donald Trump will be given the time to prove himself.
I am disillusioned with all parties, have left the Labour Party and will never join again. They will not admit that we have a problem with over-population with uncontrolled immigration and that it is causing us to loose our identity, our culture, our way of life.
Here in England we have wall to wall coverage of Donald Trump and a lot of it is doom and gloom, just as it is for Brexit.
I think it is time for me to get off my soapbox!
Love.
Sylvia xxxx
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Hello Lamis,
Please feel free to come on the thread to talk about anything that is worrying you with reference to your mother.
Best wishes.
Sylvia xxxx
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- Taxol no 4 comes coming up Friday joints clicking and very sore particularly my injured shoulder. Very scared still and worried about my bone
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Hi Sylvia and all,
Finished my fourth AC and it felt so good.I got home
Around 630 pm and fell asleep about 800.I am going to try and walk today.I spoke to my doctor and she wants To try the carboplatin with Taxol based on a clinical trial in Europe in 2014 which showed 15 percent better chance of PCR.I want to check on this-since she hesitated on statistics.She also said I could stop if I didn't like it.I am also interested in Iscador.Did you use this during your treatment?Thinking of everyone on this thread and what a blessing it is to me.
Rhond
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hi Rhonda
I asked the oncology about alternating carbo but he said studieshad shown no difference in outcome with early cancer diagnidis. I am having the 12 cycles of paxitaxol which have been ok but Drsining. The fatigue effect is cumulative. Up to dose 5 next Thursday.
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Hi Kath,
Your tumor is much smaller.Mine should say 6 cm but I am having difficulty editing. Good to know Taxol is cumulative. Are you icing your hands and feet?
I worry about neuropathy.
Rhonda
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howdy no hasn't been too bad! Having more trouble with my shoulder on the
Non affected side which worries me! My lesion was 10 mm
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Hello Kath,
I hope everything goes well with your Taxol on Friday and that you will not have any side effects from it.
It seems to me that the problem with your joints is related to the injured shoulder. Are you getting treatment for it?
If you are worried about your bone, and think it is connected to your chemotherapy you should have a bone nuclide scan for peace of mind. If that were me I would be asking for a DEXA scan after the chemotherapy anyway to check the bone density and see whether you have developed osteopenia or osteoporosis from the chemotherapy. Chemotherapy and radiotherapy affect the bones.
It looks as though you and Rhonda are running level with your chemotherapy treatment, but Rhonda is doing her AC.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I was glad to know that you have now finished your fourth AC and are doing well.
Only you can decide what to do about having carboplatin along with your Taxol. The experts do say it is good to have a mixture of chemotherapy drugs killing off cancer cells in different ways. Carboplatin seems to be appearing quite often now in the regimens. Remember, however, that lots of us, and that includes me, have had successful PCRs without it.
As for Iscador, I did take it orally throughout my treatment, but it was prescribed to me by a homoeopathic breast cancer consultant, working in a hospital and she worked with my breast cancer team at another hospital. She always sent reports to them after my appointments with her. I took the oral Iscador on diagnosis and for about five years. I must point out that the homoeopathic consultant did tell me that I needed to have the orthodox treatment as well. In addition to the oral Iscador, that homoeopathic consultant also gave me powders to take at each stage of my treatment.
Before I started my orthodox treatment, I took anti-cancer powders prescribed by the same homoeopathic consultant.
Wishing you well.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I do hope all of you will manage to have a good and relaxing weekend. Try to pack away all your worries and enjoy life.
To Kath, Gina, Chris, and Rhonda, you all seem to be doing well as you go through chemotherapy.
To Pam, Val, and 4everStrong, I hope you are getting on with your lives and remaining always optimistic. Enjoy every day.
Hello Maggie in Scotland. I hope all is well with you up there in snowy Scotland.
Best wishes to Barbed and Lamis. Keep well and keep in touch.
I am wondering what has happened to the group well past treatment. I do hope you are all OK (Hanieh, adagio, Amanda10, Michael, Tom and InspiredbyDolce).
Best wishes to everyone.
Sylvia xxxx
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Thanks Sylvia,
I just posted a morning moan on my swallowing problem thread.
Just got back a blood test result and my tumour markers have risen for the fourth time in a row - things aren't looking so hot. I was being pro-active getting it done as I have felt that I have lost control of my health (NHS) as I am having problems with getting treatment for my hip too - it's the bane of my life - constant chronic pain.
Oncology next month and I'm hoping that I'll get my CT scan PDQ now I have that - as waiting until the end of February (that is an "urgent appointment" too) to see a consultant and then another wait before getting a scan - would be March/April - TNBC isn't going to wait.
I'm off to the gym - as someone once told me "you have to be fit to be ill" and it's true.
Hope everyone has a good weekend.
xx
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