We are 211,213 members in 82 forums discussing 151,373 topics.

Help with Abbreviations

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 Aug 20, 2018 06:45AM 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 13 years and 02 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
Log in to post a reply

Page 399 of 401 (12,019 results)

Posts 11941 - 11970 (12,019 total)

Log in to post a reply

Sep 11, 2018 09:34AM sylviaexmouthuk wrote:

Hello Gill,

I was glad to read you are getting off dairy.

I have been drinking Alpro unsweetened almond milk or Alpro unsweetened soy milk for years. I was drinking unsweetened soy milk back in 2005 when I was first diagnosed. It is very important to have some plain unsweetened yoghurt in your diet and you need to buy one with live cultures (probiotics) to keep your gut healthy. I buy Sojade unsweetened plain soy yoghurt with live cultures or Provamel unsweetened plain soy yoghurt with live cultures. Both of these are organic. With the Provamel you can also get one almond flavoured and one that is coconut.

Let me know what you think of the chocolate.

On a different matter, I was having a look on the All topics and did some reading on one of the metaplastic threads. I rediscovered Dulcie on there who used to post here some years ago and she had metaplastic. I was surprised as I was reading through to read a post which said there was another metaplastic thread Metaplastic Breast Cancer Now and that it was more active. Unfortunately I could not find it. The post was asking how to get the other one deleted so that there were not two running at the same time. Do you know about this?

I like to keep up-to-date with as much as I can. There are so many different kinds of breast cancer and so many possible variants within a tumour. It is mind boggling really! What I gathered from that first thread I was reading was that at least when it started, I think about 2012, most patients seemed to be going through chemotherapy, radiotherapy etc. much the same as the rest of us. This may have altered in 2018.

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
Log in to post a reply

Sep 11, 2018 10:27AM peterandliz wrote:

Hello Gill,

7 years ago the waiting list was about 4 weeks but that was at the end of July to the end of August so when the hospital would have had a lot of holidays happening. Liz's surgeon said Liz could have what ever she wanted. Our only problem came when we wanted to know the percentage of people that lived for 5 and 10 years. We had to ask about 10 times before he would show us the figures, but to us that was the most important thing so we could plan what we did next. luckily we are still doing what we wanted to do 7 years later.

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 11, 2018 11:03AM peterandliz wrote:

Hello Sylvia,

Taylor our son is now 18 and doing well. We have left him for 14 nights this time. I did have his older sister come over and check on him 4 times we were away. We have returned today and the house is tidy so that's good. He wants to do Maths and English GCSE's this year as he has not done any exams as we home schooled him. This is his choice. As long as he is happy that's all that matters at the moment.

We have just returned from our latest trip Through France to lake Annecy onto Chamonix and into Switzerland. Back through part of Germany and now home.

Liz is still having tests to find out why her joints and muscles are aching so much but while she can get out and travel we will continue to do so.

I still skip through this page once a week but no longer read the posts in great detail but I did see the Norfolk and Norwich hospital mentioned.

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 11, 2018 11:59AM SusieW5 wrote:

This looks very positive.

https://www.metaplasticbc.com/


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
Log in to post a reply

Sep 11, 2018 12:00PM Rosiecat wrote:

Hello again,

I'm not going to ask about statistics, but I don't think my surgeon would be too keen on giving them to me. Since having my diagnosis I've searched through so many numbers and have come to realise that thay all seem to rely on averages. That's just not accurate. Also most follows ups stop at 5 to 10 years, so many people go on into old age without ever being recorded.

Thanks for yours and Liz's very encouraging story. All this good news has helped me so much. I guess people who have posted on this site, just beat the cancer and move on, so lots of good news never appears.

Enjoy your next jaunt. I just hope the weather picks up so that I can get the full Norfolk in Autumn experience.

Love,

Gill X





Log in to post a reply

Sep 11, 2018 12:03PM Rosiecat wrote:

Oops, should have said 'hello again Peter'

Gill X

Log in to post a reply

Sep 11, 2018 12:19PM Rosiecat wrote:

Thanks Susie,

That looks very promising and upbeat.

Just had a very quick look at the first bit. Going to visit the site again shortly. I'd been to the Bena Roberts site which is very informative, but not for me. Hearing how many girls had been lost was just too difficult. Bena's a real fighter though and very feisty.

Hope you've had a good day. Cold and rainy here so might be time to put the logburner on.

Take care,

Gill X


Log in to post a reply

Sep 12, 2018 04:35AM flgi wrote:

Hello everyone,

Just thought I'd pop in to report on my mum's treatment and say hi.

Well, she's almost three weeks into her first cycle and about to start her second on Saturday. It's been a mixed picture. She had a rare allergic reaction to the one of the anti-sickness meds at the very beginning, but this was diagnosed and dealt with very efficiently by the JR hospital. A week later, she started feeling hot and cold, took her temperature, and it had risen to 38.1, so she went into hospital and spent 5 days there on IV antibiotics until her temperature came down and her neutrophil level went up.

We always knew the latter was a common occurrence during chemotherapy- and the doctors were never very concerned, but any hospital visit always adds a bit to the anxiety-levels (anyone who read my past message about my recent 4 day stay in hospital for suspected but misdiagnosed cervical cancer will understand that any emergency hospital admission leaves me feeling a bit wobbly!)

To balance the picture for anyone new/facing chemotherapy: the rest of the cycle hasn't been too bad. She has not been sick once (which she's so pleased about), bowels have been fine, and the only major symptom has been deep fatigue. She is up to pottering round the house and round the block, and has a few visitors, but does spend a fair portion of the day in bed. She is not really feeling ill though(even while she had her infection) and her morale is not too bad. She is 73 though, and the deep fatigue may in part be due to the effect of chemo on a "more elderly"person.

Gill - it sounds as though you are getting lots of support on this brilliant forum. What a whirlwind it must all be for you-a rare subtype of a rare subtype of cancer, where it is hard to find much research. In your case, I think your seeking a private second opinion is absolutely the right thing to do. In fact doing all you can to find her oncologist who has seen the most cases of your type of tumour (luckily Google makes this much easier these days)

When my mum was first diagnosed, I set up a second opinion with a triple negative expert at Guy's Hospital, London. It was really helpful as our initial consultation in Oxford had suggested that my mum should not have chemo, despite it being the only real option in Triple Negative IDC tumours, because she was over 70. The second opinion oncologist absolutely turned this on its head and said of course she should have chemo, being generally fit and well. He said he would definitely have advised his own mother to have it at 73 if she had been in a similar position. He then referred us to a third opinion doctor back in Oxford, who said the same as him!

Susie - think you're in the run-up to your radiotherapy now , or have you started it? Sorry, hard to keep up. Anyway, I do hope it all goes well. You seemed to do very well on chemo- I loved your comment about feeling like the prize patient because the doctor commented you "seemed to have tolerated chemo rather well"!

Ellen: what's her latest with your mum?

Sylvia- I went to a Healthy Eating session at Maggie's cancer centre with a cancer dietician last week. Lots of interesting stuff, which I'll put down in another message. She, like you and Mary, recommended The Rainbow Diet book along with some other books, which I'll track down the names of.

It is an overcast and rather gloomy day here in Oxford, with a definite feel of autumn in the air. My children have all gone back to school now, but, with my mother's various minor crises, I seem to have a lot to keep me occupied. Today I volunteer at my children's school's gardening club. I dread to think what our patch will look like after a summer of neglect, but there should be lots for the children to "slash and burn"at any rate!

Love to all

Flora




IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
Log in to post a reply

Sep 12, 2018 05:20AM sylviaexmouthuk wrote:

Hello Peter,

Thank you for your post. I was so glad to read that your son, Taylor, is doing well. It is amazing how quickly the years go by. I do hope that he will do his maths and English GCSEs this year as these subjects are so important.

It sounds as though you have had a very good trip in Europe.

Which of these countries did you prefer? How do they seem compared to the UK?

I do hope that Liz will be able to find out why she has these aching joints and muscles, but it is good that you are able to fit in your travels.

It is good to know that you still skip through the thread once a week. It was veery nice of you to pick up on Gill in Norfolk and talk to her on the thread.

I shall always be glad to see you on the thread and please pop in if you feel you can contribute in any way.

It is exactly eight years since I started this thread and I do wonder where the years have gone.

Best wishes to you, Liz, Taylor and your family and happy travelling!

Sylvia

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
Log in to post a reply

Sep 12, 2018 05:31AM sylviaexmouthuk wrote:

Hello Flora,

Thank you for bringing everyone up-to-date with your mum's reaction to her chemotherapy treatment. I do hope everything will go fine as she starts the second lot. Fatigue is the most common symptom and it does tend to build up as the treatment proceeds. On the three-weekly regime the first week seems to be the worst and then things start to improve and towards the end of the period patients tend to start feeling normal again, just before they have to start all over again.

I can imagine that having to go into hospital during chemotherapy can cause a lot of anxiety.

I was interested to know about your Healthy Eating session at the Maggie's centre. I look forward to reading about what the dietician had to say. It looks as though things have moved on if the dietician is now recommending the Rainbow Diet.

It sounds as though you are a very busy person. I hope you enjoy the gardening at your children's school.

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
Log in to post a reply

Sep 12, 2018 05:35AM peterandliz wrote:

Hello Gill,

I agree the survival figures are just averages and do not relate to our own personal circumstances. But they do put things into perspective of the seriousness of the illness. For instance, Liz's chance of 10 year survival was 67%. This was based on figures from 12 years previous so in our opinion they were actually better than the 67% as treatments must have improved over the last 12 years.

Firstly I believe Liz's cancer future had already been decided she was either one of the 67% or not. I still believe to this day that this was the case and what ever Liz did after treatments would make no difference to the cancer coming back or not. In fact the difference in survival figures with or without Chemo only changed by 10%, 67% with chemo 57% survival without Chemo.

I have seen 30 year old fitness freaks with very early stage TNBC die within 12 months of finishing their Chemo as the cancer came back. I also know 50 year old overweight women that eat and drink what they like and are still alive today long past the 10 year survival statistics. so you are correct when you say they do not relate to your personal circumstance.

However would you look at your future differently if your survival rates were different. for instance.

If you had a 20% chance of surviving 10 years or a 80% chance of surviving 10 years would you do anything different if you had one outcome or the other? If no then there is no need to know them. In our circumstances that would have made a big difference and our life would have been very different from now.

Our best friend died 3 years ago from Ovarian cancer. She had always planned to travel once her children had grown up. she had similar dreams to us. She first had cancer about 7 years ago. She had 2 operations to remove the cancer and all the other treatments but was told there was a 78% chance of the cancer coming back within the next 5 years. She had 3 children at the time aged 9, 11 and 18. We had introduced them to camping holidays in Devon the year before she had cancer. All her dreams went out the window when she got cancer. No more holidays she just buried her head in the sand and went back to work. she had every opportunity to have family holidays and create memories for her children but she did nothing.

Liz went to the hospital appointment with her friend when her friend was told the cancer had returned. The doctors words were " The cancer has returned go home and do what you need to do while you still can" Liz verbally tore the doctor to shreds because in Liz's and my opinion that is a cop out by the doctor. Surely if you have a young family and you are going to die you want some idea of timescale? The doctor did not even tell our friend she was actually going to die. By the time Liz had finished with the doctor she had all the facts. A timescale of 9 to 18 months survival rate. She would be able to do everything she can at the moment for the next 7 to 9 months then her health will go downhill. Liz's friend went home and did nothing just waited to die. Even though all her kids knew she had had cancer she never told them she was going to die until she could no longer get out of bed.

Maybe Liz and I look at things differently to other people. We knew we could not change Liz's cancer path but we were going to take control of the things we had control over which was the rest of our lives together however long or short that was going to be.

Peter


Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 12, 2018 06:00AM peterandliz wrote:

Hello Sylvia,

We loved Switzerland best. The whole of Europe in general is wonderful for motorhome travellers as you can stop where ever you wish and they have special car parks only for motorhomes. England in general is against motorhomes. We love mountains, lakes waterfalls but as Liz can no longer go out in the hot sun sandy beaches hold no attraction to us.

This was the longest we have left Taylor because of his disability but its good to know we can leave him for 14 days at a time from now on.

I'm not concerned about Taylor getting any exam results but its nice that he wants to get them. Forcing children to get an education in my opinion is never good. They should want to learn not be forced too.

The doctors now think Liz has something I cannot remember the name of. Its were everything hurts and aches for no physical reason. The nerves are picking up pain were there is no actual injury. The only thing is people are normally depressed that get it and Liz is the happiest most positive person I know despite all the pain, however she has all the other symptoms. Liz is out at the moment so cannot ask her the name.

Always happy to comment if I have a point to get across whether other people agree or not with my point of view. My last post may seem controversial to some but so true to others.

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 12, 2018 06:50AM peterandliz wrote:

View

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 12, 2018 06:50AM peterandliz wrote:

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 12, 2018 07:15AM - edited Sep 12, 2018 07:35AM by peterandliz

This is were we stayed in Switzerland. Its our favourite place so far.



Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 12, 2018 08:49AM SusieW5 wrote:

Well, I went to Charing Cross for my CT scan this morning. Got into the CT room about 3/4 hour after my appointment time, only to learn that I wasn't to have it this morning after all. I had been told by the consultant that I would probably need a 'cast' as my breast is still large, even with the lump cut out of it, and needs to be kept firmly in place. So, a nice cheerful woman swathed me in warm wet bandages, like some papier maché project on Blue Peter, and will make the cast. I am to have the CT scan on Friday afternoon.

Radiotherapy starts on October 1st, for four weeks, the fourth being a booster week on the exact spot where the tumour was. The annoying thing is that I have to go to Hammersmith Hospital for it. One of the machines at CCH is being replaced so they are below capacity. Not only is Hammersmith harder to get to but it's rather grim -- with large bits of it Victorian.

Flora, sorry to hear that your mum was troubled by neutropenic sepsis. Let's hope it doesn't recur.

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
Log in to post a reply

Sep 12, 2018 10:12AM maryna8 wrote:

HI, Sylvia and all,

I am back from my trip, with many stories. I will be back later to fill you in, because I am going to visit my brother, who had an odd accident while I was gone, and is now in a therapy hospital! To make it brief, he is a very vibrant 68-year old man who is busy every minute of every day. While I was at sea, one night he got up and went into kitchen, came back towards his bed and passed out flat on his face, the doctor called it face-planting. When he did so, he suffered a severe whlplash-type injury and now has a spinal cord injury called Central Cord Syndrome. At first he couldn't move at all, and paralysis was feared. Then slowly things came back, but he still is having therapy for walking and lifting arms and especially for restoring the dexterity of his hands. He also has severe nerve pains in his arms and hands. Apparently he has made much improvement already, we can only hope and pray that this continues. Surgery has been ruled out for now.

Fortunately his speech, thinking, and organ systems have not been affected. Also it has not been determined why he passed out in the first place, his heart was checked and was okay; and he did not have a stroke. After that I think it was determined more important to get his function back, and delve more into the passing-out later.

I will talk to you again soon,

Greetings to Gill, and good to see beautiful pics and hear from PeterandLiz.

Love, Mary



Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Sep 12, 2018 02:29PM Rosiecat wrote:

Hello Flora,

Hope after the initial, very worrying problems, that everything goes smoothly for your mum. That second and third opinion was worth its weight in gold. Hope the first Oncologist who thought your mum was too old for chemo has been given extra training. The seventies is not really old any more. Still lots to look forward to. Your mum was lucky to have you as her advocate. Give her my very best wishes. Take good care of each other.

Gill X




Log in to post a reply

Sep 12, 2018 02:59PM helenlouise wrote:

Hello one and all,

To respond to your questions Sylvia:

- my oncologist is working on the latest research when prescribing Xeloda as follow up in my circumstance. The decision to proceed was mine and I have done so warily. If the side effects make life too difficult I will cease taking the drug. The pathology from surgery showed the cancer had breached the node wall plus the medical review team ruled out radiation to the axillia because of the high lymphedema risk. These factors all added weight to decision to do something more. - I am seeing a physiotherapist who specialises in lymphedema and have several exercise routines plus some manual drainage techniques. I have a problem with cording at the moment and we are working to resolve that as a priority. Raising my arms into place for radiation is painful. - radiation is to my chest wall and just above the clavical. I too thought I would escape radiation having had whole of breast in 2013 but I now no longer have a breast and they are treating the chest wall (front and back). - level 2 lymph node dissection involves a section of flesh below the pectoral minor muscle in the armpit. Apparently there are 3 levels of dissection. Level 2 is common and from what I can understand is the surgeon removes a slab of flesh (that takes the involved node/s). - the protocol for DCIS in Australia in 2013 was (depending upon size of tumour) lumpectomy followed by radiation. Not sure that hormone receptors were even tested. So no follow up therapy only physical exam, mammogram and ultrasound. - I have just completed my second week of Xeloda and 12 of 28 days of radiation. I have a week off the chemo then back to the medical oncologist for review before I start the next round. If I can tolerate the drug the plan is to continue this routine for 6 months. Aside from the increased neuropathy and fatigue, so far so good. I would really like to go back to work in October so fingers and toes crossed for that.

Loved the happy snaps of the Switzerland trip. Love the conversations.

Take care everyone X
2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine)
Log in to post a reply

Sep 13, 2018 05:01AM sylviaexmouthuk wrote:

Hello Peter,

Thank you for your post and for those really lovely photographs.

I would be interested to know what it is that Liz is suffering from. It must be very wearing to have aches and pains and for no apparent physical reason. I know that pain associated with the nerves is very difficult to treat. I have a friend who has nerve pain from having had shingles. What Liz has almost sounds like peripheral neuropathy, which is a side effect from the taxane drugs used in chemotherapy treatment. My oncologist told me this when I told her about the numbness in my feet. It seems as though this neuropathy can also take the form of pain.

It is good that Liz is happy and positive and can deal with the pain.

Once again, wishing you all the best.

Sylvia

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
Log in to post a reply

Sep 13, 2018 05:14AM sylviaexmouthuk wrote:

Hello Susie,

I was sorry to read that you did not have your CT scan as was planned. I do hope all will go smoothly on Friday afternoon.

It will be good for you to get started on your radiotherapy, as waiting for treatment to start is very tiring. It is a nuisance that you are having to go to a different hospital to where you are having your treatment. I would not have been happy about that when I was going through treatment. My oncologist dealt with all my chemotherapy and with all the arrangements for my radiotherapy. The Hammersmith Hospital does not sound very nice and I cannot understand why we still have Victorian hospitals. We are so behind. I recently read that we have just one private hospital with a proton beam radiotherapy machine and just two are being built for the NHS. They have twenty in operation in the US and they have been carrying out proton beam radiotherapy for some time. It is supposed to be much safer.

In a previous post you were asking about drinking alcohol. It is a recognised risk factor for breast cancer. I suppose each individual will make up their own mind what to do. I know recently on the news it was being said that there is no safe limit for drinking alcohol. I used to have an occasional glass of wine, but I have not had any alcohol since 2005, do not miss it and would never touch it now. There is a problem with too much drinking in this country. It is an addictive drug and I cannot see it has any health benefits. If you want resveratrol that is in red wine, you can get it from red grapes. It is probably in black grapes as well.

Keep well.

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
Log in to post a reply

Sep 13, 2018 05:19AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your post and I am so glad that you are back on the thread.

I was so sorry to read about the accident that your brother had while you were away. I do hope that he will make a full recovery. Does your brother live near you and how far is the therapy hospital where he is being treated?

I do hope that he will be able to find out what caused him to pass out flat on his face.

I look forward to hearing from you again.

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
Log in to post a reply

Sep 13, 2018 05:30AM sylviaexmouthuk wrote:

Hello again, Mary,

I thought you would like to know that I have had three emails from Chris Woollams in quick succession. There is some quite interesting information in these.

I have also bought the latest edition of Chris Woollams, Cancer Active, magazine, icon (Integrative cancer and oncology news, volume 11, issue 2 – everything you need to know to help you beat cancer). There are a lot of interesting articles in this and the ones I picked up on are:

6 ways to improve your chemotherapy.

Breast cancer watch.

Brest cancer, hormones and wi-fi.

Guidelines on diet and physical activity.

Latest cancer news from around the world.

Sugar intake and cancer – emerging evidence.

15 ways to reduce chronic inflammation.

We had surprises this week with posts from Lou, as well as Peter and Liz. On the other hand, we have not heard in a while from regular posters like Val, adagio, 53Nancy and nothing from Marias, Hanieh and Gina.

I have missed you on the thread, Mary. 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
Log in to post a reply

Sep 13, 2018 05:43AM sylviaexmouthuk wrote:

Hello Helen,

Thank you for your post and for taking the time to explain what has been happening with you with reference to your treatment. All I can say is that you are going through a lot and I do hope all will end well.

Lymphoedema is a risk with all three parts of our cancer journey, surgery, chemotherapy and radiotherapy, and yet it seems to have been largely ignored for many years. Fortunately it is now getting a lot of publicity and attention, which I think has probably been helped by the recent book Let's talk lymphoedema. Surgery can cause lymphoedema, the taxane drugs can also cause it, and radiotherapy can cause it. Here in the UK the NHS seems keen on compression garments but I think exercises and manual lymph massage are very important.

Please keep in touch and let us know how you are getting on.

I can understand how you would like to go back to work and put this all behind you.

Wishing you all the very best.

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
Log in to post a reply

Sep 13, 2018 06:50AM SusieW5 wrote:

I was told yesterday that it would be okay for me to swim during radiotherapy so long as my skin wasn't blistered and so long as I washed thoroughly afterwards. I do feel that my Aquacise classes will help keep the lymphatic system moving.

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
Log in to post a reply

Sep 13, 2018 08:48AM peterandliz wrote:

Hello Sylvia,

We think Liz has Fibromyalgia. Liz has all the symptoms apart from being depressed.

The specialists first dismissed it as Liz is not depressed.

Peter

Dx 7/14/2011, 3cm, Stage IIB, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 9/6/2011 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/20/2011 CEF Radiation Therapy 3/21/2012 Breast
Log in to post a reply

Sep 13, 2018 09:36AM maryna8 wrote:

Hi, PeterandLiz

Fibromyalgia came to my mind when reading your first post, it is difficult to diagnose and can cause a lot of misery. It's very good that Liz is not depressed. I think being in pain can cause depression on a temporary basis, it goes away when pain subsides, I've been there too. It sounds like Liz has many good days as well, and you two seem to be enjoying life to the fullest.

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Sep 14, 2018 07:47AM maryna8 wrote:

Hi, Sylvia

My brother is doing much better, he is not 100% and there is no guarantee he will be, but I am encouraged by his progress. He is being sent home tomorrow, but will have to do outpatient therapy for some time. His daughter and I worry about him being sent home already since he is such a "doer" that we are afraid he will overdo once home, but we ended our conversation last night with the knowledge that he is an adult in his right mind and we really can't stop him from going home if that's what he wants. We are both worry-warts and have to talk over all the scary scenarios, it seems. He is walking well and has made much progress with his hand dexterity too. The clinic is about 50 miles from me.

The Alaska trip was splendid, once I got over the fears for my brother's immediate well-being. We left Vancouver and went up the Inside Passage of Alaska, to the Land of the Glaciers that spill into the sea. We made a few stops, and had excursions of many kinds and saw whales, humpbacks and orcas. We saw dolphins, harbor seals and sea otters. Some people saw land animals from the ship but that took sharp eyes and/or good binoculars. Being on the starboard side of the ship helped too, we were on port side. The views we saw of land from our ship and on excursions were just magnificent, words and pictures don't suffice. I can see why people get so enamored with that land, although then there is the winter! Most of the people who worked with the tourists would leave at the end of this month and go south for the winter. We were blessed with beautiful weather for our trip, we were told it was highly unusual to have it at this time of year, we had crystal clear views of almost everything, even Denali and the Alaska Range, that mountain usually hides her majesty 300 days of the year. That was on the Land Portion of our trip, we rode on trains, planes, helicipter, buses, vans, and once were pulled by sled dogs on that portion, oh and walked of course.

I will post some pictures as soon as I can.

I did receive the Chris Woollams post emphasizing Childhood Cancers, I will have to search for the others. Later today and tomorrow I hope to have time to look at some of this information.

I hope Val is not being affected by the hurricane, the only good news is that it has lessened in intensity.

I shall talk to you again soon, dear Sylvia.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Sep 14, 2018 07:53AM maryna8 wrote:

Hi, HelenLouise

You are dealing with a lot of different things at once, I certainly do hope all will go well and the Xeloda will be well tolerated. I'm glad you have found a good therapist to help with the lymphedema and I hope the neuropathy does not progress any farther.

The goal of going back to work in October is something to look forward to, I wish you the very best progress with all you are going through.

Talk to you soon, love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Sep 14, 2018 08:13AM SusieW5 wrote:

Sylvia,

I was interested in the survival rates you quoted of 67% with chemo and 10% less without. Those are exactly the figures I was given after surgery in February, which suggests that they take no account of individual variations.

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

Page 399 of 401 (12,019 results)