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Topic: Calling all triple negative breast cancer patients in the UK

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 12, 2010 08:43AM - edited Oct 22, 2019 02:02PM by sylviaexmouthuk

sylviaexmouthuk wrote:

With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 14 years and 04 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 11, 2019 07:57AM Rosiecat wrote:

Hello Sylvia,

I expect you've already read that the French government has made the decision to phase out payment for homeopathic treatment. I think we have to assume that only 'proven to work' meds will become the norm as governments run out of money for healthcare. It's so difficult to assess the efficacy of homeopathy, vitamins and mineral supplements etc when used alongside accepted medicines.

I had some bad news earlier this week. A very dear friend who was diagnosed with TNBC two years ago has just been diagnosed with TNBC in the other breast. After lumpectomy, chemotherapy and radiotherapy the first time around, she has to go through the whole process again. The surgeon was vague when she asked if it was primary or secondary so she won't know until after her surgery. It doesn't help, but I'm so angry on her behalf.

The weather here is has been mixed. Generally warm, sometimes overcast with the odd surprise shower thrown in. The garden is growing so quickly though it's always difficult to maintain control at this time of year.

I shall see if our library has a copy of the book Susie recommended.

Take care of yourself and Raymond.

Love,

Gill X


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 11, 2019 08:20AM maryna8 wrote:

HI, Gill

I'm lagging with posts too, since my arm is better I have begun to do some of the things outside that have been neglected all through spring and summer. I still can't lift heavy weight and my arm tires quickly but at least I can do some things. I got the mower out and did some of that , and did some weed-eating that my lawn-teen-ager is oblivious to, amazing because he walks right past the weeds whenever he's here. I have stubbornly not told him, I keep thinking he has to see them. No matter now, I will do it. Many weeds remain in flower beds and odd corners everywhere. I am trying to keep being patient, I am now over 4 months in, but not considered ready for full activity till 6 months.

It sounds like your village had quite a party last weekend, no beer left in the neighborhood! I had a good time on the 4th, went to my step-daughter's house, she had a large gathering of family and friends. Everyone ate, drank and at dark they shot off a lot of fireworks. On Saturday I met up with a group of friends, we are a sad lot lately. One of them has very recently lost her husband to kidney cancer, one has recently been diagnosed with lung cancer. We had a good time nevertheless.

The earthquake in California was far south of where I was on my trip, but I think the whole area is vulnerable. I am pretty sure the people in the area where I was felt some shaking. That would be frightening. The state I live in has a huge fault to the south of where I am, they say it will go off sometime, it is called the New Madrid fault. It was forecast to shake about 20 years ago and people moved breakable things and prepared for the worst and nothing happened. Like the boy who cried wolf.

I saw your post above where you mentioned HRT. I took these pills as therapy after my hysterectomy. I was told the benefits far outweighed the risk. I wonder......I have asked this question of 2 oncologists and they really don't know if that was a factor in my TNBC diagnosis or not.

Today is going to be temperate since there was a little rain that came through yesterday, tomorrow back to high heat. Seize the day I suppose.

Talk to you again soon, love

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2019 10:30AM maryna8 wrote:

HI Kath

So you are back from your holiday with a bang, back to dealing with influenza. We over here get the flu vaccine you Aussies are using now is it any good this year? I managed to get through last winter with no flu, my pattern has been about every 2 years, hope my immune system is strong enough now to carry me past it without getting struck with it..

Congrats on doing so well with your studies, how impressive that you are so close to being a Nurse Practitioner! Over here they often stand in for the Doctors, and are invaluable to their practices.

I'm afraid aches and pains are just part of life now, darn it. Have fun with grandsons, and good luck with mammogram!

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2019 11:45AM SusieW5 wrote:

Hi Gill,

One of the first questions I asked my oncologist was whether having cancer in one breast made it more likely you would get it in the other. Her reply was yes, but only slightly. It's likely that your friend has another primary but what a horrible prospect of having to go through it all again.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 11, 2019 12:24PM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your latest post. I have not yet bought the current edition of WDDTY. I shall probably buy it when I next go shopping in the store where they stock it.

I am glad you enjoyed the photographs of the grounds in the complex where I live. Everything looks really good at the moment but we now urgently need rain and some cooler temperatures. It is veery humid here and not very comfortable.

It is good news for Kath that she has done so well in her exams.

I do hope that Marias will get back to us. She has been through too much and I do hope this next lot of treatment will go well.

As for Hanieh, I really do think that she has left the thread now. I do hope she and her family are well and coping with all the trouble that Iran is going through. I am so fed up with all the trouble in the world and none of it serves any purpose.

I do not know where we are going with orthodox cancer treatment. I read the other day that there are 200 different cancers, so I do not think we are going to get a vaccine. The orthodox treatment can bring people to NED but the side effects that can remain for life are no picnic. We just do not know how much damage has been done to our bodies. All we can say is that we are alive.

I have just bought the latest edition of the New Scientist magazine and on the cover this is what I see: Convoluted studies, Cherry-picked evidence, Contradictory advice: Why everything you know about nutrition is wrong – Red meat, Eggs, Carbs, Fat, Sugar, Fibre.

The article is on page 32 and the title is Everything you know about nutrition is wrong – why almost all food advice is fatally flawed.

I shall comment more when I find the time to read it. It is 4 pages long. I do like the picture on the first two pages. It is of two fried eggs in a frying pan, one with a happy face and one with an unhappy face.

I saw that you have been talking to ucfknights, another American, and another one who is posting for her mother. Perhaps Flora will pop in or even LoveandLight, Sarah, who were both posting for their mothers. We are such a small group of regular posters now.

That is all for now.

Love.

Sylvia xxxx


Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 12, 2019 12:49PM flgi wrote:

Hello all,

I just wanted to pop in to send you all my good wishes.

I have been having some “time off” thinking about cancer, but don’t want to leave the thread completely as it’s been so valuable to me.

My mother is now about 3-4 months out of chemo( can’t actually remember the exact amount of time- a sign maybe of trying to return to some sort of normality).

She still doesn’t feel well exactly, though the chemo side effects are less extreme than they were, particularly those affecting the gut( she really struggled with these towards the end) but has moments of “remembering what “well” feels like. And her energy is fast returning. She has now looked after my youngest two children six consecutive Saturdays on the trot- no mean feat!

Her first post chemo mammogram was fine. She hasn’t been offered a CT scan, but I think they prefer not to do one unless there are any obvious symptoms. Did others have one? I know Sylvia did. She has also had her first biophosphanate treatment.

How are you all?

I will try to catch up on the thread.

I hope your colitis is more under control, Gill, and your shoulder getting ever better, Mary.

Helenlouise and Marias, I think you had had signs of some kind of recurrence? I hope the doctors are throwing all the wonders of modern medicine at you and you are feeling well cared-for.

Susie, I hope you’re enjoying swimming again. I’ve really got back into it again this year- such lovely weather we’ve been having! I’ve plunged into lakes, rivers and the outdoor pool over the last few months!

Anyway much love to this very close and helpful internet community

Flora x

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Jul 12, 2019 03:50PM SusieW5 wrote:

Hello, Flora,

Yes, it's good to get in the pool on these muggy days. I didn't have a CT scan after treatment. I think these are not routine now as they may have been when Sylvia was being treated. I had one early on to make sure there was no sign of spread and one to plan my radiotherapy.

It is hard when you're ill to remember what it feels like to be well. I hope your mother gets back to feeling well all the time.

Susie xx

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 13, 2019 08:39AM ucfknights wrote:

2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/3/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/10/2019 AC + T (Taxol) Surgery 8/18/2019 Prophylactic mastectomy: Right
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Jul 13, 2019 03:12PM Rosiecat wrote:

Hi ucfknights,

I wouldn't worry about your mom having few side effects from chemotherapy. I had quite a few and asked my oncology specialist nurse if that meant my chemo was working particularly well. She said that side effects were absolutely no indicator of effectiveness.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 13, 2019 03:29PM Rosiecat wrote:

Hello Flora,

Good to hear from you and I'm so glad that your mother is getting her energy back. Problems with the gut are difficult to cope with, I hope they disappear once and for all very soon. My colitis is easier to control now that I know which food is out of bounds.

You needed to get away from thinking about cancer all the time. Dropping in with updates now and then sounds like a good idea. I know many of us are interested in what you and your mum are getting up to.

I'm very impressed that you swim in lakes and rivers, does this make you a wild swimmer?

Look after yourself and give my best wishes to your mum.

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 14, 2019 06:18AM sylviaexmouthuk wrote:

Hello Flora,

Thank you for popping in to bring us up-to-date with your mum. It sounds as though she is doing fine. It does take quite a lot of time to feel exactly right.

I would not worry about your mother not having been offered a CT scan. If you can avoid these scans I think it is safer. There is quite a lot of radiation exposure involved in a CT scan.

After finishing treatment the best thing is to keep looking forward and put cancer in a dark corner somewhere.

Take care.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 14, 2019 06:28AM sylviaexmouthuk wrote:

Hello ucfknights,

Thank you for your posts. Just try to take one thing at a time and be positive for your mum. Going through chemotherapy is a long process and most of the women that have gone through this thread that I started back in September 2010 have found it the most difficult part of this journey. Let your mum concentrate on getting through this and then she can get ready for the next part of the journey. With just two more Taxol infusions to get through she is nearly at the end of that long journey.

She will need to rest up a bit and recover from the chemotherapy in order to get ready for a bilateral mastectomy on August 19th.

Let us know how she gets on with the MRI scan prior to her surgery.

Will she be having any radiotherapy?

Wait for the final result at the end of all the treatment and look forward to her having a good pathology report of NED (no evidence of disease).

Thinking of you.

Best wishes

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 14, 2019 06:39AM sylviaexmouthuk wrote:

Hello Mary,

I did buy the latest edition of WDDTY and discovered that although it is the July edition it is not the one you already have. This one has on the front cover Protect yourself from pollution – Natural ways to stay safe, plus How I beat MS, The truth about safe alcohol levels, Exercises for better posture, The safest sun screens, Who is taking big money from big pharma?

I think that, because you have a subscription, you are getting the next issue in advance.

On the back page of my July issue it says in the next issue, August 2019, on sale from July 25th, Natural alternatives to antibiotics, How I beat fibromyalgia, Not a (safe) drop to drink, The heartunhealthy regime.

By the way, having that article in the New Scientist about nutrition, and about everything we know about it is wrong, I conclude that most of the news about nutrition is not based on facts and the common sense thing seems to be to eat everything in moderation.

Today I am having a trying-to-catch-up-with-everything-day and to start tomorrow with no lists of things to do.

Thinking of you and sending best wishes your way.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 14, 2019 06:44AM sylviaexmouthuk wrote:

Hello Gill and Susie,

It was good to see you keeping the thread going.

I was wondering whether you saw on the news the interview with Rory Cellan-Jones, the BBC science correspondent. It was all about how he has had proton beam therapy on his eye to treat melanoma skin cancer in the eye. He had it done at that proton beam clinic somewhere around Manchester, I think.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 14, 2019 08:33AM maryna8 wrote:

Hi ufcknights,

I think you can count your mom among the lucky ones that she is not bothered too terribly by the chemo. That's positive!!

And, she only has 2 Taxols to go, that's good too.

As Gill said, her side effects are no indicator of what kind of job the chemo is doing. The mastectomy is not too difficult to recover from, be sure she does her exercises afterwards. Good luck with the MRI! It sounds like things are going well, we can never know about the cancer cells exactly, but with any luck at all those nasty things are out of the picture for good.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 14, 2019 08:52AM - edited Jul 14, 2019 08:52AM by maryna8

Hi, Sylvia

I have been having a glum few days, my shoulder has been acting up and I am quite anxious about what's going on with it.

At the beginning of the week I was feeling better about it than I had in months and now I am just frustrated with the whole thing. This all started Wednesday evening when I was doing the very gentle exercises I do in the evening, they consist of pulleys and arm movements. I tried to reproduce a movement I had done earlier in the day with the therapist, which almost looked like a dance movement, slow and graceful across the body. When I did it, my shoulder made a snap, crackle and pop sound, very loud. I did it again, because I am not smart? Same result.

My shoulder has hurt again ever since, it just feels all wrong, and I'm having a very quiet weekend. Feeling very alone and worried. and sorry for myself.

I know this is a BC thread, but just had to vent a bit.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 14, 2019 10:01AM - edited Jul 14, 2019 10:04AM by sylviaexmouthuk

View from my kitchen window. All my own work, since I am in charge of the grounds, do some work and instruct the gardeners.

This is also what I can see from my kitchen and is in part of the complex.

A pot of geraniums. I have placed these around the grounds to give some colour.

More geraniums.

A two-tone hebe.

This is a bed I made in another part of the grounds.

A lovely hydrangea bush with euonymus shrubs for shape.

Hello everyone,

I thought you might enjoy these photographs that Raymond took.

I do hope you are all having a good weekend. Many thanks to those of you who have been keeping the posts going, namely Gill, Susie, Mary.

It was good to have adagio, viewfinder, Flora, Kath, Helenlouise, and Marias pop in. We should all welcome ufcknights, a new poster. We have not heard from Val and Hanieh for a very long time now.

Wishing everyone all the very best.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 14, 2019 10:22AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your latest post. I was sorry to read that you have been having a glum few days, that your shoulder has been acting up and you are anxious about what is going on.

That exercise you have to do that involves pulleys, sounds quite complicated and even easy to overdo. Do you think you have somehow overdone it? Perhaps you need to go back to your physiotherapist and get it checked. That exercise reminds me of something I was given to do some years back now which involved using a long length of rubber hooked onto a door handle. I found it difficult, did not enjoy and stopped doing it! I do hope you can get this checked out and get some relief.

I was glad to know that you are having a quiet weekend. I feel that sometimes life just gets too much for us. You are right to come here and talk to your friends and get some comfort.

Raymond and I are also having a quiet weekend. Last week got just too much for both of us. On Thursday I somehow strained my back when bending to pull up some weeds. I could not believe it as it was nothing compared to some of the hard work I have done in the grounds. I think I have pulled the muscles in my lower back and I have had to take some painkillers and cover the area with BioFreeze. The next day we had to take our car over to a place near Sidmouth for an MOT and service. That morning turned into a nightmare and we were stuck there from 9 am to 1 pm. To cut a long story short, the loan car did not materialise, the MOT passed but a hub cap went missing and we now have to wait three weeks to get a replacement. We then had trouble at the pharmacy because they could not locate a prescription for Raymond and were not helpful. I had to go in search of it at the GPs surgery. I then took it to a small pharmacy and got it filled without trouble. We were both feeling exhausted by this time. When we got home I opened the post for the communal electricity ot our complex and found it all completely wrong. It took ages on the phone to try to sort it out.

On top of everything else, we are fed up with the complete chaos over Brexit.

We have had a quiet two days and stayed inside our apartment.

It is true that this is a BC thread but I have often said that having a rant or switching off cancer is good therapy. At least Raymond and I can commiserate with each other, but I sometimes wonder what I would do without him.

Take care, Mary and remember what goes around comes around and also that this too will pass.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 15, 2019 05:42AM Rosiecat wrote:

Hello Sylvia,

I read the article about Rory Cellan-Jones' experience of proton beam therapy. He went to the Clatterbridge Cancer Centre on the Wirral. I'd never heard of this place, but it seems to be well ahead of the game, so worth knowing about. So many hospitals are paying off debts and won't be in a position to fund this. Perhaps proton beam therapy could be made available in specialist centres around the UK.

The planting you've done around the grounds of your complex adds a real splash of colour. Geraniums are always good at this time of year, especially when the weather is too dry for many other plants.

I've just had a quick look at what's in Chris Woolams' newsletter and noticed that there's something about the common chemotherapy drug, Paclitaxel, which is used to treat so many of us, including me. I'll have to get down to reading the article in the next few days.

After looking at your post to Mary I can only say that I hope this week brings you better luck than you and Raymond had last week.

Love,

Gill X

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 15, 2019 01:05PM - edited Jul 15, 2019 01:06PM by Rosiecat

Hi Mary,

Hearing your shoulder snap, crackle and pop doesn't sound good at all. All that exercise therapy and it has to be the slow and graceful movement that causes problems. I hope you've been able to speak with your physio today and that she's come up with some remedial exercises to put things back as they were. Shoulder surgery/recovery is certainly no picnic.

Mary, I know from experience that all teenagers are oblivious to mess of any kind - weeds included. They're just programmed that way. Mostly they just eat, sleep, sulk, slam doors and occasionally grunt if some sort of communication is required.

I'm due to have my infusion of Zoledronic acid on Thursday afternoon and hoping that all will go smoothly. It should give me up to 3% protection against cancer spreading to my bones which hardly seems worth the effort, though as an added benefit it also helps to protect against osteoporosis which is probably worth having. I guess I'm digging my heels in a little because I'd hoped never to see the inside of the chemotherapy unit again.

My daughter's coming down this weekend as it's her friend's hen party. There's a group of them going off to a music and comedy festival together. My daughter assures me that she won't want me to cook Sunday lunch before she goes back as she'll be too hungover to eat. Her own hen party, five years ago was an activity weekend climbing, swinging from ropes, abseiling and cycling. This was followed by afternoon tea - that was the bit I was invited to. I'm not sure that hen parties had been invented when I got married, how times change.

Hope we all hear some better news about your shoulder very soon.

Love,

Gill X





Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 15, 2019 06:06PM adagio wrote:

Maryna - so sorry to hear about your shoulder setback - that is so discouraging - but I am praying that it is nothing serious - perhaps some scar tissue being overstretched which would be very painful - although - not sure about the noise? Praying for comfort for your mind and the ability to breathe into the pain, so that your body can relax and heal.

Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/25/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/20/2012 AC + T (Taxol) Radiation Therapy 3/25/2013 Breast
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Jul 16, 2019 04:38AM sylviaexmouthuk wrote:

Hello Gill,

I think the Proton Beam centres planned are just two. One is the one you mentioned and the other one is in London and is not yet completed. These centres need a lot of space and are very expensive.

I have not yet read the latest Chris Woollams email.

Have a good week.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 16, 2019 07:21AM SusieW5 wrote:

For UK residents,

Horizon is devoting a programme to proton beams on Monday, 9pm, BBC2.

Susie

Dx 2/1/2018, IDC, Left, 6cm+, Grade 3, 1/1 nodes, ER-/PR-, HER2- Surgery 2/13/2018 Lumpectomy Chemotherapy 4/19/2018 Radiation Therapy Whole-breast: Breast
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Jul 17, 2019 04:46AM - edited Jul 17, 2019 08:12AM by Rosiecat

Does anyone remember the case of Asha King, the little boy who had brain cancer and was 'abducted' from Southampton hospital by his parents? The NHS had offered surgery, chemotherapy and radiotherapy to the child. The parents were concerned that radiotherapy would cause too much damage to surrounding tissue. Doctors refused to allow the parents to take him to Spain for proton beam therapy. I think the hospital took out a Court Order to prevent the parents from removing Asha from the hospital. Asha's parents 'abducted' him and took him to Spain where he was given proton beam therapy. It was very successful and Asha was alive and doing well three years later.

The case stuck in my mind mainly because of the Court Order and the power of doctors to disregard the parents who, in this case, had done their research and were very knowledgeable. The NHS team's refusal to even consider proton beam therapy came across as sheer arrogance.

I've been looking at a thread on this site concerning skin damage to breast cancer patients when (possibly) too much radiotherapy is given. I do think that proton beam therapy is the way forward whatever the cost to the NHS.

Gill X


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
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Jul 17, 2019 08:37AM - edited Jul 17, 2019 12:12PM by maryna8

HI, Sylvia

Thanks again for posting the pics of the beautiful flowers on your grounds; they all look so perfect, and I can tell you keep a watchful eye on them.

The therapist worked with my arm for an hour Monday and she listened to my story. the arm is not as stiff as a result, and I am glad about that. I have better movement, but not back to where I was, and I still have pain with exertion. And if I put my hand on top of my shoulder and move it, there are pops and clicks and something moves inside that doesn't feel right to me. But I'm not the doctor. I am returning a call to my doc's office today that I missed yesterday, they didn't call my mobile number but only my landline at home. If all else fails, I do have an appointment with doc next Wednesday, we'll go from there.

The pulleys are the gentlest of exercises really, it just consists of a long rope fastened over a door with handles on the ends that move through a pulley. The pulley gives you ability to move your arm by pulling with opposite arm. I am still doing those, but haven't been doing anything with weight since all this happened. The rubbery bands you mentioned are also part of my routine, but I haven't done those either for a week or so. Those are called resistance exercises.

I was away from home yesterday most of the day because I sat with my friend at the hospital after her lung surgery, she was diagnosed with lung cancer and had 2 wedges cut from her lungs. She is doing amazingly well so far.

I do hope your back has recovered, sometimes a simple little twist is all it takes to inflame an area, it's a strange thing and unpredictable. Rest and icing anti-inflammatory meds are about all you can do for it. I hope by now it's much better!

We here have heat warnings for the next 4 days, it will be extremely hot for the next 4 days with humidity. I will probably be hiding out in the afternoons.

Talk to you again soon,

Love, Mary

(Sylvia, since I wrote the above I have contacted the doctor's office and I received orders to take a week-long regimen of steroid pills, ugh.)

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 17, 2019 11:44AM maryna8 wrote:

Hi, Gill

I love your description of teen-agers, sounds just right to me. Also you can add they always seem to have little headphones in their ears so they are pretty safe from hearing anything you say to them!

My therapist did work with my shoulder Monday and the stiffness is better, but pain with exertion remains. Just swinging my arm while walking doesn't feel very good, as an example. The orthopedic doctor's office called and wants me to take the week-long regimen of steroids that she prescribed, so I grudgingly started them. I have found they make me jumpy, unable to sleep well, and slightly nauseous. The nurse suggested taking Zofran (anti-nausea drug) with it to combat nausea, but it has the lovely side effect of causing constipation! No thank you. I see the doc next Wednesday and should be finished with pills by then, and we will find out if they have helped.

I do understand your resistance to the Zoledrenic acid, we can only hope when we take any of these drugs that the benefit outweighs any risk. Good luck with that, is it a shot or an infusion? I suppose you could have Michael lead you into the chemo unit with your eyes closed!

Enjoy your daughter this weekend, although it sounds like you won't see much of her. In my memories of younger days and hangovers I was always very hungry the next day, so no lunch sounds odd. Tell her that all hangovers end at 3 PM sharp, I found that to be true 99% of the time. Another helpful tip.Headphones

Good luck tomorrow!

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 17, 2019 12:02PM maryna8 wrote:

Hi adagio

Thanks for your encouragement re: shoulder. My doctor said back in early June she thought the noise and pain that came with it was scar tissue. I have no idea, does scar tissue ever get better?? It pops and cracks always with certain movements, and last week was the worst it ever did, and that caused my shoulder to be very painful and stiff. I now have started on a week-long routine of steroids, because she doesn't want me to be unable to do my physical therapy. I hope this does some kind of magic, magic that is lasting, that is. I hope we're on the right track here.

Hope all is well with you and yours! And that your husband is continuing his healing.

Talk soon, love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 18, 2019 04:21AM sylviaexmouthuk wrote:

Hello Mary,

I do hope you will make a full recovery soon. It must be exhausting going through all this.

I do not envy you all that heat and humidity. I find I like cool temperatures more than anything else. It has been quite hot here in Exmouth but above all there has been no rain and we really need it.

Thank you for your kind words about the grounds. The hebe shrubs have been exceptional this summer.

My back seems to be recovering and is just a bit stiff now.

As for proton beam therapy, only time will tell whether it is as safe as they are saying. There will also be the problem of cost and availability especially here in the UK.

I found the email for July 15th from Chris Woollams very interesting. I do agree with him that we need personal plans for each cancer patient and that patients have to their own plan of trying to keep it at bay by personal life-style changes.

Another article is about the common cancer drug that spreads cancer! It turns out to be the taxane drug paclitaxel (Taxol). If this is true of paclitaxel, then it is probably the same for docetaxel (Taxotere), which is what I had. My oncologist told me that docetaxel was less harmful on the heart than paclitaxel, but is it really? The taxanes definitely cause neuropathy and they also cause lymphoedema, so these new drugs might be worse than the older generation of drugs such as doxorubicin, epirubicin, cyclophosphomide, methotrexate and fluorouracil.

I think if you can get away with just plain surgery for your cancer treatment, then you are less likely to have short and long term side effects. That is my own personal opinion. If you can catch everything early and avoid lymph node removal, then the journey should be much less traumatic.

Another interesting article was about radioactive iodine therapy for thyroid problems, which increases cancer risk.

I was also interested in the article about how your brain has a microbiome.

As for WDDTY I sometimes feel quite confused after reading it, as you do not know what to believe.

I tend to just carry on with my own routine with living the day and having a lifestyle based on everything in moderation.

Thinking of you, Mary, and hope you will soon be recovered from all this pain and stress.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Jul 18, 2019 05:11AM Kathseward wrote:

hi everyone

Getting myself really churned up about mammogram and it’s not due until sept! Can see some changes in my breast which have been there over 12 months that drs have already seen but still I freak. My scar line is indent down one end and puffy at the other which I am also attribute to radiotherapy changes. Can’t feel any lumps and radiotherapy does make the breast more dense! My onc has seen and not worried but those dark feelings still keep coming! I hate this fear!

Cheers

Kath

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/30/2017 Whole-breast: Breast, Chest wall
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Jul 18, 2019 07:58AM maryna8 wrote:

Hi, Sylvia

I forgot to mention especially about the two-toned hebe, isn't it rather unusual to have that? Very striking.

I also read the Woollams' post on Taxol and probably Taxotere too. It's probably difficult for people taking that drug right now to read that. It's hard for me to read it knowing all the changes these drugs made in my body, I just prefer to think that they also helped keep me alive, since I've already dosed with it! I wonder how much better the newer drugs are really, the platins and so forth.

My friend in the hospital who just underwent lung surgery is probably going to face chemo and radiation too, after she heals up. Her niece said she heard the doctor say it would be a strong dose of chemo. I feel for her, she is doing very well so far but that will be hard.

I agree with you about WDDTY, there is a lot in that magazine, wait until you read the article on treating Fibromyalgia in the next issue you see, I did not understand the method used really, to treat the woman's illness. Quite confusing. I do find that much of the information in the magazine is common sense however, while much of what we read in orthodox news is sensationalism. (Don't eat apples! Don't drink coffee! Eggs are bad for you!) I will renew that mag when it comes due, can't say the same about most others.

I have learned some things about my anatomy too, and the problems that mastectomy can cause, while going through this shoulder recovery. My shoulder first began hurting about 5 months after breast removal surgery, and later I was diagnosed with partial rotator tendon tears. The tears progressed over the years and the bicep muscle tore as well. During my therapy sessions, I am realizing how the area around my surgery site and pectorals is quite tight. I am realizing that the therapy routine after mastectomy was very important, and I would say more important than any of my medical team ever said. The paper with the proper exercises on it was dropped on my bed by a technician shortly before I was wheeled out of the hospital, and I was on my own to follow through. I thought everything was okay in that area, but my therapist is saying that the pectoral muscle being tight has affected my shoulder placement, my right shoulder turns inward which puts pressure on my tendons, shoulder blade, everything actually. She also told me that now many of the docs are sending their mastectomy patients into therapy now, to avoid these things happening. It made me wonder if the mastectomy had a part in causing my shoulder problems.

As I expected, the steroids made me go to bed late and be up early, but it did give me time to reply to you. Have a great afternoon!

Talk soon, love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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