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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 07:43AM - edited Nov 20, 2018 04:11AM 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 05 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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Aug 7, 2018 03:28PM flgi wrote:

Hello to Helenlouise, Moth and Bryce99

And to the other regulars of course.

I wanted to check in briefly just to say that I agree with whoever it was (Moth I think?) who said what a warm and helpful thread this is. It really is wonderful that Sylvia has kept it going for so long, and I feel it is that very continuity that has contributed to its success. I know people have drifted in and out over the years(as happens naturally when people resume their post-treatment "normality"), but the fact that there has always been a wonderful stable base, in the form of Sylvia and her thoughtful, balanced messages, makes it unlike any of the other forums I have checked out.

And I love the "daily life" anecdotes such as the one from Mary about the spaghetti squash on the compost heap! The simple things in life...

Ellen- good luck re: your conversation with your mum about the chemo. I feel for you both, and hope that you can come to accept whatever your mother decides to do. It is so strange that my mother and I have had experience of the "opposite" dilemma: the surgeon saying "no further treatmeat due to your age" and my mum and I begging for chemo!

Bryce-your search about aspirin chimes well with mine. Two of the consultants we've seen have suggested there are encouraging signs re: aspirin and prevention of BC cancer recurrence. One went as far as to suggest a 75g daily dose for my mum, not specifically for the anti-recurrence purpose-as correct dosage for this is still under research-but for general health benefits. He did say, however, that he recommended aspirin be stopped during chemo, due to the small likelihood of bleeding becoming more pronounced with low white blood cell count.

The Vitamin D thing is interesting. I must make sure my mother gets her levels checked before chemo. Not sure if this is standard or not in her health trust.

Anyway, hope everyone has a good evening(if in UK , morning if in Australia and afternoon if in US/Canada!)

Flora

IDC Er-Pr-Her2- 2cm 0/3 nodes Grade 3
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Aug 7, 2018 03:32PM SusieW5 wrote:

Oh, yes! Whoops! Reminds me of when the Houses of Parliament put an obscenity filter on incoming email and the MP for Scunthorpe suddenly realised he wasn't getting any emails at all.

I had three 3-week cycles of FEC and then the same of Docetaxal. No problems with the FEC. Docetaxal giving me a couple of days of headache/sore throat/joint pains and, more annoyingly, ten days of everything tasting vile.

Yes, I know the tats are very small but I shall still be able to say, 'Hey, I have a tattoo. No you can't see it as it's in an intimate place'.

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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Aug 7, 2018 05:21PM maryna8 wrote:

HI, Moth

Your experience with chemo sounds very familiar to me; I also had a hard time with it. After my first infusion I felt worse every day and about a week later had to go to the hospital with low white cells, extreme weakness, and a fever. I also had 5 days with IV antibiotics. The doc had tried to give me all 3 drugs at a time, AC and T, he thought it would go faster, but I could not handle it. I had numbness in feet after the first treatment of chemo, and still have neuropathy in various places, my legs do not have the strength of previous times and my feet usually are tingly. I was so happy when I finished, little did I know how long it would take me to get back out of the hole I was in physically.

I like the theory that maybe some people just don't need as much chemo as others, I was never given any explanation, they cut the dose so I could finish it.

It also sounds as if you have come through it well, that is awesome. I did not eat enough and lost too much weight and muscle, and I didn't have a lot to start with. Ah well, we are here now to talk about it, and I for one feel like I/we climbed a mountain.

Good luck with getting all in order so you can start your classes for the Bachelor of Science in Nursing, that's admirable. I hope the radiation starts soon, and you can get that behind you, and get on with your life.

Talk to you again soon, 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)
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Aug 8, 2018 04:50AM sylviaexmouthuk wrote:

Hello bryce99,

Thank you for your latest post and the details about your sister's treatment.

What is happening with her now? Is she now considered stage 4 and thus metastatic. If so what treatment is being offered? If she is still stage 3, what is her oncologist suggesting? You need to be guided by her oncologist and what is suggested and then your sister needs to make up her mind what she wants to do.

I can see that you have been doing a lot of research, but that can get very confusing.

There is no magic bullet to cure breast cancer. It is a complicated disease with various different types of breast cancer with hormonal or non-hormonal tumour receptors, but the basic treatment is surgery, chemotherapy and/or radiotherapy. There is a pool of chemotherapy drugs and we get the same ones with variations in the regimen. Remember too that cancer cells are mutating all the time. It seems to me your sister needs a frank discussion with her oncologist and medical team to find the right solution for her.

Has she been tested for the BRCA1 or BRCA2 faulty genes?

How is she coping emotionally with all of this? How are you coping with this?

Fond thoughts.

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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Aug 8, 2018 04:56AM sylviaexmouthuk wrote:

Hello Helenlouise,

Give yourself time to heal. You will find that everything will sort itself out.

What is the next step for 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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Aug 8, 2018 05:03AM sylviaexmouthuk wrote:

Hello Moth,

Thank you for all the details in your latest post. It does seem that the taxanes do take a toll on people, whether it is docetaxel (Taxotere) or paclitaxel (Taxol). It was on docetaxel that I lost my eyebrows and eyelashes. They did come back but are not quite the same as they were.

As for neuropathy, it is also the taxanes that cause this. This is what my oncologist told me. I have numbness in the feet and it is still there all these years after treatment. My oncologist told me there is no cure, as did two podiatrists and my GP.

It is also now known that the taxanes cause lymphoedema. You might want to read the book Let's Talk Lymphoedema.

I do hope all goes well with your radiotherapy.

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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Aug 8, 2018 06:39AM maryna8 wrote:

Hi, Sylvia

I can post a pic of a tulip tree (liriolinden) later. These are large trees, not the small ones that flower in spring. These do bear flowers in spring and they are unusual, a light green with yellow centers and cup-shaped and they blend into the foliage. But the trees can grow very large, and are water-lovers, this dry, hot weather is hard on them.

I will be leaving this morning for a few days, it is going to be 20 to 25 degrees cooler where we are headed, that sounds wonderful to me. I will try to keep in touch here while gone.

I am rather in the same thought pattern as you about the venous issue, if I can get things helped with minimal insult to the body I'm for it. But I won't fool myself it will be a permanent fix.

I had better get moving, I will 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)
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Aug 8, 2018 09:44AM ellewebs wrote:

Hi Ladies, I had a long chat with mum about chemo and she has spoken to her breast cancer nurse today. She is thinking she will give the first dose of chemo a try and see how it goes - it seems to affect everyone so differently so I am keeping my fingers crossed that she doesn't have too many side effects but we can only wait to see. She may yet change her mind and I am fine with that too if she decides chemo is going to be too much for her. The breast cancer nurse did say that they would have only offered her the treatment if she thought she was well enough to go through with it. She is having ACT treatment so I presume the Taxol you talk about is the T bit of the treatment - doesn't sound very nice stuff. Anyhow will keep you updated ladies and lots of love to everyone going through this. Ellen. xx

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Aug 8, 2018 11:23AM SusieW5 wrote:

Hello, everyone

I saw my consultant oncologist this morning. On our two previous meetings I found her cold and impersonal but she was all sweetness and light this morning. Just moody? Or maybe she doesn't like to get too attached to us until she's happy that we're going to make it. Happy

I signed the consent forms for the radiotherapy and am awaiting phone calls to schedule a CT scan, the appointment with the radiologist and the therapy itself. I am also to have six-monthly injections for three years to reduce the chance of bone cancer. Anyone else have this? I asked about aspirin and she says that Ealing Hospital is doing a trial with it and she'll put my name forward for it.

It's all go.


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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Aug 9, 2018 05:33AM sylviaexmouthuk wrote:

Hello Susie,

I was glad to know that you thought your oncologist was in a better mood or frame of mind. I would think it must be difficult being an oncologist and having to be unemotional when dealing with such an emotional disease.

I was interested to know that you had signed your consent forms and that you are now getting near to having your radiotherapy.

I saw that you are having a CT scan and was wondering whether this is something that is now standard practice after finishing chemotherapy. It seems to make sense to me. I just had a CT scan before treatment and then after treatment, that is after radiotherapy.

I was interested to read that you are going to have some injections every six months for three years to reduce the chance of bone cancer. These injections sound to me like bisphosphonate drugs (alendronic acid) such as the brand name Fosamax. I know people who have had this drug in pill form to treat osteoporosis or to try to prevent menopausal osteoporosis.

I do not know much about the injection and if it is alendronic acid.

I am sure you will get all the information you need. I do know a couple of people having bisphosphonate injections every six months but that is for the treatment of osteoporosis.

I am sure we shall all be interested to know whether you get on the trial at Ealing Hospital. I wonder whether it will be one of those trials where you are not told whether you are getting the aspirin or not.

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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Aug 9, 2018 05:40AM sylviaexmouthuk wrote:

Hello Ellen,

Thank you for updating us about your mum's treatment. It looks as though she will have the standard drugs for her chemotherapy if she does finally go ahead.

It is difficult to come to any conclusions about the chemotherapy drugs. As for AC, Adriamycin and Cytoxan (doxorubicin and cyclophosphomide) we get different opinions. Some find it worse than the taxanes and others find the taxanes worse. As we have said, it is all very individual. What we all know is that chemotherapy drugs are toxic. As for the T it could be paclitaxel (Taxol) or docetaxel (Taxotere).

Best wishes to you and your mum.

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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Aug 9, 2018 05:49AM sylviaexmouthuk wrote:

Hello Mary,

I shall look forward to your posting a photograph of your tulip tree. I must say the tree sounds very interesting. I can understand how as water loving trees they suffer in dry conditions. It has been quite problematic here with hydrangea shrubs that lap up water.

I do hope you are enjoying your time in the cooler temperatures. Thank you for saying that you will try to keep in touch while you are away. You have been a very loyal and faithful poster ever since you joined the group. You have given great support.

As for the venous issue, I have decided just to monitor the venous eczema near the ankles on the legs. Since this is all to do with valves in the veins not closing, and pushing blood upwards, I cannot see how the blood can be stopped going downwards, and hence venous reflux, without something being done to the valves. Any information you get your end will be of great interest, because I cannot see anything coming from the NHS.

Enjoy your time.

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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Aug 9, 2018 06:09AM sylviaexmouthuk wrote:

Hello everybody,

It is getting near the end of another week, so I hope you all have pleasant things planned for the weekend.

The thread has been very busy with those going through treatment, Helenloise (Helen) from Australia and recovering from surgery.

SusieW5 from the UK preparing for radiotherapy.

Ellewebs (Ellen) posting for her 81 year old mum who will probably have some chemotherapy.

We also have bryce99 posting for her young sister. I think she is from the US.

There is also Moth from Canada and she is waiting for radiotherapy.

I do hope we shall soon hear from adagio and 53Nancy as we have not heard from you in a while and since you are both from Canada I hope you will get to know Moth.

The same goes for Kath and CocoonCat from Australia. It would be nice if you could pop in to say hello to Helenlouse (Helen), your fellow Australian.

Best wishes to Pam, Val and Monica in the US. I have missed your weekly post Pam but I know you have a busy job.

Flora, I do hope all is well with you and your mum.

Hanieh and Marias, we do miss all your interesting posts. To Hanieh, any progress on your idea to go to Canada and what is happening on the medical side?

Marias, are you still in Sweden with your mum? Are you still having problems with internet connections or are you back in Colombia where there seems to be a lot of turmoil?

Hello Gina, in the Philippines, how are things going with you? Do you still have internet connections?

Best wishes to Jags and Sid in India. I think you may have moved on.

Hello Kathy, posting for your sister, I am not sure what you are doing now, but I hope you are both well.

Hello Sarah (Loveandlight) I do miss you on the thread, posting for your mum and I do hope you are both well.

I hope I have not forgotten anyone, but if I have please pop in and let me know.

I still think of Tom (breastcancerhusband), Michael (Chatterbox) and InspiredbyDolce(Debra).

Best wishes to everyone.

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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Aug 9, 2018 11:42AM SusieW5 wrote:

Hi Sylvia,

Yes, I believe the six-monthly injections are bisphosphonates. I'm not sure how they help prevent cancer spreading into the bones but I have to trust that they've done their research.

My understanding is that the CT scan is to make sure that the radiotherapy can be as precise as possible, which is obviously welcome. I guess that's an innovation since your day.

I had a call from the woman running the aspirin trial this morning and she seems happy for me to join. She's about to go on holiday so will ring me again in a couple of weeks. It'll be a double blind trial over five years but they are testing full-sized aspirin as well as the mini one which suggests that my chances of getting a placebo are only 1 in 3. I shall find out more before I commit myself, anyway.

It must be hard as an oncologist to tell people there's nothing you can do for them, but the consultant who told me and my husband that his cancer was terminal in 2014 did it in the most insensitive way imaginable, leaving us both gob-smacked. No build up -- no 'I'm afraid I have some bad news', just blurted out, 'There's nothing we can do. Sorry.' I never forgave her for that.


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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Aug 10, 2018 02:59AM ellewebs wrote:

Hi everyone,

So, mums decided against chemo but at least she has given it a lot of thought with facts this time, so I have to respect her decision. She is going with the radiotherapy though so thats something - we are just waiting for the letter. What is this aspirin trial - is that something mum could look at I wonder ? Anyhow I go on my hols to the Algarve tomorrow which, to be honest, I need as its been such a rough ride over the last 6 weeks but leaving mum in the capable hands of her friends and neighbours. Hopefully she can start the radiotherapy when we get back and I can support her through that. Sending lots of love to you ladies and I will post when I am back. Ellen. xxx


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Aug 10, 2018 04:52AM sylviaexmouthuk wrote:

Hello Ellen,

I do hope you have a good holiday in Portugal and I can understand how much you need that break. Try to switch off and come back feeling ready to see your mum through her radiotherapy.

I am sure your mum will be fine with friends and neighbours and I hope she will be ready for her radiotherapy when you come back.

Most patients seem to find radiotherapy a lot easier that chemotherapy but it can make a person very tired, skin needs to be well looked after and just going for treatment every day for five days a week can be very tiring. The actual treatment does not last long, there is a break at the weekend but the treatment is usually for at least three weeks and there is often booster treatment integrated into the daily treatment.

Wishing you a happy holiday and look forward to hearing from you when you get back.

Fond thoughts.

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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Aug 10, 2018 05:04AM sylviaexmouthuk wrote:

Hello Susie,

I know you do a lot of thinking and research about your treatment, so if that were me I would read up all about bisphosphonates and their possible side effects. It seems to be one of those drugs that is being pushed a lot.

I have a reference book here at home that is the most recent one on medicines and drugs. It is entitled "BMA British Medical Association New Guide to Medicines and Drugs - The complete home reference to over 3,000 medicines" 10th edition fully revised and updated 2018.

It is divided into very useful sections.

1. Understanding and using drugs

I found the section on cancer very interesting. It is under malignant and immune disease.

2. Major drug groups

3. A - Z of drugs

This section includes vitamins and minerals and complementary and alternative medicine.

4. Information and index

I have been using this book for years and keep getting the updated one.

Have a good weekend.

Fond thoughts.

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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Aug 10, 2018 10:14AM - edited Aug 10, 2018 10:18AM by SusieW5

Ellen,

It's believed that aspirin can help to prevent a recurrence of cancer and the NHS is now doing a five-year trial to test this theory. There may be one going on near you but I suspect that your mum is not the demographic that they are looking for. I hope I don't sound insensitive when I say that she is now at the age when she might die of any number of causes within the next five years. Both my parents died at 82, which is pretty much average life expectancy. Again, forgive me if that sounds crass.

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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Aug 10, 2018 10:21AM SusieW5 wrote:

So, last chemo this morning. A slow session as some nurses are on holiday so mine was tending four patients instead of the usual three. Also the pharmacy was slow sending up the Taxane.

PICC line out with a short sharp 'ouch'; turns out there were little hooks under the skin. It has a dressing which I can take off in two days and I have a spare in case it looks as if I still need it.

Could have done with some sort of ceremony to mark the occasion of my last visit to the unti, hopefully forever.

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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Aug 10, 2018 10:36AM moth wrote:

Susie, congrats on being done!!!!

I kept reading about the centers in the US that have a bell ringing or something...but we don't do that here either. Our units treat palliative and hospice patients too so it really wouldn't be appropriate to have ceremonies like that. Maybe that's the case at yours as well? I know what you mean about wanting it to be your last visit. When I was chatting with one of my nurses about going back to uni for a BSN degree, she said "oh maybe you'll come to work here" No, nope, no thanks, I'd rather never see this place again! LOL

I got news that my rads start on Monday - yay!

I'm also realizing that school starts in just a bit over 3 weeks Singing I have a lot of things to get done & arrange before then so I better get my butt in gear.



Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Aug 10, 2018 11:00AM MoniThor wrote:

Susie-congratulations on finishing chemo! And on getting your picc line out. Now on to radiation therapy.

I rang a bell at my last chemo session. My center has one large area with recliners and also a few smaller rooms branching off main area. When the oncology nurses saw that 4 of my dearest friends and sister showed up with muffins for them and a party crown for me, I guess they decided to put me in a private room. My oncologist even popped in at the end when I was ringing the bell.

Moth- congratulations to you, too, for starting rads next week. I end my second week today, with one more week to go. So far, my breast is slightly pink but does not bother me. I have been slathering up with aloe Vera and calendula cream.

Mostly, I’ve just been tired and feeling rather blah. It could be from the radiation, or lingering side effects from taxol or just the idea of active treatment coming to an end. Lots of emotions.

Dx 12/21/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Surgery 1/5/2018 Lumpectomy; Lymph node removal Surgery 1/5/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/5/2018 AC + T (Taxol) Radiation Therapy Whole-breast
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Aug 10, 2018 11:15AM MoniThor wrote:

Hi Sylvia,

That sounds like an interesting refere book you mentioned in your post to Susie.

I have been reading up on various vitamins and supplements. My general practitioner doctor recommends vitamin D for my deficiency, and she said she also recommends that her patients take calcium supplements.

I’m also considering taking B12 and B6 for my neuropathy. My oncologist also has me continue to take gabapentin for neuropathy.

This is all so new to me. I am someone who always thought I got plenty of vitamins and nutrients from the food I ate and did not take extra pills. This diagnosis of breast cancer has me second guessing my diet and how and if I should be supplementing what I eat.

I am always looking for good reference material to read, so thank you for mentioning the one on medicines and drugs.

Xoxo

Monica


Dx 12/21/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Surgery 1/5/2018 Lumpectomy; Lymph node removal Surgery 1/5/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/5/2018 AC + T (Taxol) Radiation Therapy Whole-breast
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Aug 10, 2018 12:06PM ellewebs wrote:

Hi Susie

You are not being insensitive - only saying what my mum is thinking ! She may pop up on here whilst I am in Portugal so watch out for a Barbara !! She is considering chemo again and tying herself in knots about it. My friends dad has just been diagnosed with secondary cancer in the lungs at the same time as discovering the primary cancer in the kidneys so at least we have got a "window of opportunity" to get an increased chance of a cure (as the oncologist said). She is frightened about the chemo and I can understand that, so she is still mulling it over ! We shall see. xxx

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Aug 10, 2018 01:22PM SusieW5 wrote:

Hi, Moth,

No sign of palliative or hospice patients, as far as I have seen.

Actually, I realise will have to go to the day unit again for my six-monthly injections, but that'll be a whole different ball game and only take about 10 minutes.

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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Aug 11, 2018 02:25AM SusieW5 wrote:

Ellen,

Are you, like me, an only child? People think it's a huge burden but it has its advantages. When my parents were dying in 2015 (ten weeks apart after 61 years of marriage), I was just able to make decisions about their care and then about the funeral arrangements without having to call a committee meeting every time. My sister-in-law is one of six and her mother was dying about the same time (at 95) and nothing could be decided without endless phone calls, meetings where people had to come frm all over the country and drama, as people disagreed. Of course, your mother is still well able to take her own decisions, which mine weren't, so that's very different.

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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Aug 11, 2018 02:30AM SusieW5 wrote:

What do people do to maintain mental health? I tried a Mindfulness 'taster' about four years ago but decided that it wasn't for me. 25 years ago, I was taught Autogenics one-on-one and have practised that, albeit intermittently, ever since.

I also make use of relaxation/sleep tracks on YouTube. At night, unless I'm really sleepy, I select one on my tablet, don my comfortable M&S eyemask and settle down to a soothing voice and drift off quite quickly. There are thousands of tracks and you have to kiss a few frogs before you find your princes but I find The Honest Guys, Michael Seeley, and Medication Vacation suit me. All male voices which do work better, I find, with the lower pitch.


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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Aug 11, 2018 02:52AM ellewebs wrote:

Hi Susie - yes an only child and my Dad only died 2 years ago after having palliative care at home for 6 months - my mum nursed him through this and me too. As you say, being an only child does have its advantages and I am very close to my mum but we make decisions together and talk through things together - its definitely less complicated ! Anyhow, signing off for a bit as flying to Portugal this afternoon - going to try and switch off a little bit whilst I leave mum in the capable hands of her friends and neighbours. Sending love. xx

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Aug 11, 2018 09:14AM sylviaexmouthuk wrote:

Hello Monica,

I do find that book I mentioned useful, but I am not one for taking vitamins and definitely not one for taking any medication. My GP knows that my husband and I do everything we can to take care of ourselves and that we are 'no pills, no medication' people. I most certainly believe what I said when I started this thread and that is I believe that food should be your medicine and medicine your food. I finf the book I mentioned useful to see all the nasty side effects of medication.

If I were you I would continue as you are and get your nutrients from the food you eat and if you are eating a good mixed diet you do not need extra vitamins. They are really there to help with deficiencies, but we have to bear in mind that they have fillers in them and that they are foreign to our body.

I do understand about taking vitamin D and I do take it regularly, but I do have days off. It is especially useful in cold climate countries during winter when we may not get enough sun, because it is not that easy to get it in our diet.

I can understand that vitamin D and calcium supplements do go together in the treatment of osteoporosis. There are different sorts of calcium. I do have chemotherapy induced osteoporosis and I try to get calcium from my diet through nuts, seeds, beans, and some vegetables, especially green ones. I do not get the calcium supplements offered on the NHS here as they are made up of calcium carbonate, and my information is that this is not easily absorbed. These are the only supplements I take and I am very cautious with the calcium. I take Solgar Ultimate Bone Support, as the supplements are balanced and include calcium, vitamin D3, vitamin K2, Copper, Manganese, Magnesium, Zinc and Boron. All this is contained in each pill in the right proportions. It says to take four a day, but I only take one and I take days off. The calcium is calcium citrate.

It is difficult to know what to say about neuropathy, which seems to be caused by the taxanes. That is what my oncologist told me. She also told me that there is no cure and there is nothing to take for it. I was also told the same by two podiatrists and my GP. My neuropathy takes the form of numbness in the feet. I was surprised to read that your oncologist has told you to take the drug gabapentin, which is an anti-epileptic drug. It is also a drug used after shingles from the pain left in the nerves by this disease. With neuropathy the nerves have been damaged or destroyed and nothing will bring them back. All this just shows you how two oncologists can have different views.

It does say in the medical book I mentioned that the most common side effects of gabapentin are drowsiness, dizziness, fatigue and muscle tremor.

I think we probably have to be very careful about taking any kind of pill, unless we are in a life threatening situation, but that is my own personal view.

I have a few books that I have for reference and keep them updated. I have the British Medical Association A-Z Family Medical Encyclopedia – the essential reference to over 7,000 medical terms including symptoms, diseases, drugs and treatments. My copy is 6th edition 2014.

How are you getting on now that you are post-treatment?

How do you feel now compared to how you felt before?

What do you do as relaxation?

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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Aug 11, 2018 09:35AM sylviaexmouthuk wrote:

Hello Mary,

I saw that your last post was on Wednesday August 8th and you were getting ready to go away for a few days. I do hope you and your sister-in-law are enjoying the break.

Today, Saturday, here in Exmouth, we are having a little rain but not as much as they have been having in the south-east of England. The rain is supposed to be moving towards us in the south-west and I am longing for it to happen. So often the rain misses us in Exmouth and it can be pouring down in Exeter, just twelve miles away.

I was able to do some gardening on Wednesday as it was a perfect day for being in the grounds.

I am trying to read that book I mentioned to you not that long ago. It is a non-fiction book entitled Human Wrongs – British social policy and the universal declaration of human rights by TJ Coles.

I am also reading with great interest, what is essentially a reference book, entitled 100 Books that changed the World. I am sure you would enjoy it.

I am also reading a book entitled Havoc in the Head by Roger V Crawley – The Stolen Self of Temporal Lobe Epilepsy – as described in Neurology, Poetry and Fiction. Roger was a friend and neighbour who lived in our apartment complex and this book has been published by his brother after Roger literally dropped dead while out walking on holiday on Christmas Day 2016. He was a really interesting man.

I do miss you on the thread and there is still no news of Marias or Hanieh and adagio has not been around in a while.

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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Aug 11, 2018 11:51PM lilyp6 wrote:

Hello Everyone,

I'm taking a break from posting for a while. I'm doing really well, feeling great, and I care deeply about what's happening with everyone. But I also need to experiment a bit with detaching from cancer information.

My treatment ended over a year ago, and I can say for certain that daily life can get so much better for those of you who are going through treatment now. I gathered my thoughts to share a list of tips that helped me, in case it can provide any comfort or insight. It became very long, so I hope that's ok.

I have more gratitude for the support and connection that I found here than I could ever express. I'll be back from time to time, too.

Love,

Pam

Dx 5/25/2016, IDC, Right, 4cm, Grade 3, ER-/PR-, HER2- Chemotherapy 6/7/2016 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 8/29/2016 AC Surgery 12/1/2016 Mastectomy: Left, Right Radiation Therapy 1/16/2017

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