Calling all triple negative breast cancer patients in the UK

Lou2016

Hi Pam,

I totally agree with Sylvia about getting as active as we can. My regular exercise now is walking back after sending my DS to school by bus. It is also a good way to get some sun.

Like you, I am also guilty about using gadget in bed but it is no more than 1 hour for me. I used my iPad to read the forum while listening to music. It is my form of relaxation before finally going to sleep.

I might also try the app Luminosity because lately I feel like I am quiet slow in writing. I used to write a lot but this days I feel that I have difficulty formulating a good conversational pieces. I feel like I am ata loss for words sometimes although I wanted to share more. I couldn't quiet put it into words.

During day time now, I went back to doing a new Quiet Book for DS. I need to finish it before our flight to Cambodia on the 1st week of September for a short trip. I hope it will keep him occupied during the flight and I don't have to carry too many toys.

I am still having some shooting pains from the mastectomy side. My joint pains have subsided a lot. I am experiencing another new discomfort. I might be going through chemo induced menopause. I am having a lot of hot flushes and I can't sleep without aircon. I also feel like something is crawling in my skin and it itches when I perspire.

Thanks for your kind words Mary and Sylvia.

Best regards,

Lou

sylviaexmouthuk

Hello Pam,

Thank you for your interesting post. I suppose that, with the television, it is like everything else. We watch it in moderation. I find that I cannot sit too long in front of the screen as I start to get very fidgety. I do like a good drama. Last night on the BBC there was an excellent new film of the classic novel by Thomas Hardy, Far From The Madding Crowd. I found it interesting and relaxing.

If reading on your Kindle before going to sleep helps you, then I cannot see that it can be harmful for you. We do need sound, uninterrupted sleep in a dark room for our health. We must have that melatonin, so we are told! I think that the generation of today are brought up on electronic gadgets, so it is difficult to resist them. My generation was brought up on books, libraries and radio more than anything else. Lately I have found it difficult to find a book that retains my interest. There is a lot of rubbish in the bookshops.

It is good that you are doing without chemical sleeping aids. I usually have a mug of strong chamomile tea an hour or so before I go to bed. I like Pukka Three Chamomile and usually put two bags into a mug.

Are you planning any holidays? I think quite a few of our group are planning a trip somewhere before summer comes to an end. I hope they will send lots of photographs.

I think we all know that there are side effects from chemotherapy treatment. How could it be otherwise when we know how toxic they are? We learn to live with all this.

I think you are doing just about everything you can to keep yourself healthy.

That is about all for now.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Lou,

I just wanted to say that I hope you have a good time in Cambodia.

I hope your shooting pains soon disappear. Remember you are not that long over treatment and your body has been through a lot of trauma. Give it time.

Thinking of you.

Best wishes.

Sylvia xxxx

adagio

Angie - I had an allergic reaction to my 2nd infusion of Taxol - it was rather unpleasant and frightening. They had to give me extra prednisone and anti-histamine and stop the infusion for a while. They then started to very slowly and it took about 6 hours to go through. I had only 4 treatments of Taxol and thankfully I had only one allergic reaction. My oncologist did reduce the dosage for the subsequent infusions. Hopefully your wound will begin to heal soon - I can only imagine how frustrating that must be for you.

Sylvia and everyone else - thanks for keeping the thread alive and interesting to read. I have been super busy with grandchildren visiting - they just left today and it is so nice to have the peace and quiet again.

I now have to put my mind to our upcoming trip to India which is only 5 weeks away. I am struggling with the whole concept of travel vaccinations and at this time I really do not want to put foreign substances into my body. So I am researching different ways of handling the situation. There are no mandatory vaccines required for India, but they do recommend a few. At this point I am considering not getting anything and just being extra careful while we are there. Does anyone have any experience with vaccines? I would appreciate any feedback and/or recommendations.

To all those going through treatment - take it easy and rest when your body needs it - I found taking a walk every day very beneficial.

Angelica25

hi Adagio

I had my 7th Taxol yesterday. Thankfully they loaded me up with steroids that I didn't have a reaction. I was so happy. 5 more to go. The wound is still 1and half inch deep. I'll find out Thursday if I'll be put back on a wound vac then.

How exciting you are going to India! I was born there. I go back every other year. I have my boys get a malaria vaccination. I don't get anything. I would recommend taking bug spray. It gets buggy this time of year. Only drink bottled water and stay away from street food. What part of India are you going to?

Lou,

Have a wonderful trip and be safe

Angie

Angelica25

hi Sylvia,

When I tried putting in my deatails there was not the option for stage 1c. Only stage 1a or 1b. As far as tubular that s what they said about my tumor in the pathology report.

Angie

Kathseward

hi everyone

Physically doing well although still have lots of aches and pains after taxol. Doesn't restrict my movement at all. Peripheral neuropathy

In my feet and finger tips settled for a while but seems to have flared up again. Had a very strange feeling in the outer aspect of tibia just below the knee yesterday which freaked me out. Felt like pins and needles. Settling slowly and I have done so walk of late with my orthotics so it could be that!

Mentally I'm s a basketcase and every acheand pain scares me so much! U know I had osteo before chemo and taxol aggravates it but I feel like I'm just holding my breath and waiting. Such a terrible feeling. Try so hard to get past this

Hope everyone is doing well and I'm sorry to be on such a downer but it's such hard work! Wish I was blissfully unaware

Cheers

Kat

Angelica25

hi Kat

I'm so sorry you are aching. Taxol does effect the bones. Are you taking any pain reliever?

I found icing my hands during Taxol helps with the neuropathy.

Hang in there!

Angie

adagio

Angie - I am doing the golden triangle - Delhi, Jaipur, Ranthamore, Varanessi, Agra and then 2 days only in Mumbai. I am still working on the shots issue - and have not made up my mind yet. It is exactly 5 weeks until we leave. Lots to do before then!

Hope you continue to do well with your treatments - wishing you only the best.

adagio

Kath - sorry to hear that you still have a lot of stress about recurrence. I found it took a good 2 years before I really started to relax more around the whole cancer issue. Neuropathy never happened to me - thankfully - but I did get the achey joints for quite some time. Things will get better for you. Keep active and busy - it is the best antidote to overthinking.

marias245071

Hello Angie. Thanks for your words. I hope you learn soon how to swim is very relaxing.

Abrazos

Marias

marias245071

Hello sylvie and all of you.

My breast is still red. The pill and the other cream don't make anything.

Tomorrow I will go to the doctor of radiotherapy. I hope she will says I can begin the season of radiotherapy.

I will take femara before the radiotherapy.

I felt really tired this days and I don't know if I will feel better again.

I'm taking a walk two times a day. I go out with the dog of my brother in the morning I walk 2.km and in the evening 1 km. I came exhausted.

I take a new pictures. That make me feel better.

And also I'm watching in YouTube videos about Bizancio and the construction of Constantinople. Byzantine empire

Abrazos

Marias

Kathseward

thanks adagio

It is the most horrible feeling isn't it? The peripheral neuropathy settled for a while and then got worse again. Maybe recirculation occurring again. I also got orthotics put in for my feet and the strange feeling I got in my outer leg seems to happen when I walk a lot with them. The tingling is still there though but it doesn't hurt. I think I get scared when something new occurs.

It's so hard to remember how I felt pre cancer( how sad is that??) I know I had osteo arthritis in my fingers and all the steroids and chemo I had made it feel a little better (weird) but the cumulative effect of taxol kicked in about a week after I finished and the joint pain and osteo took over. I'm also getting older and I had degenerative changes before chemo in my spine so I can't expect much else. I think when it's done we all want to feel better straight away but I think it will take a while.

Think I need another overseas holiday. We may go back to China next year and explore more

Cheers

Kat

sylviaexmouthuk

Hello adagio,

I was glad to see that you and others have been keeping the thread going. I have had a few very busy days.

I was very surprised to read that you are going to India in just five weeks time. I did not know that this was part of your plans.

I can understand your concern and reluctance about vaccinations. I have not had many during my lifetime. Way back in 1969 when I was preparing to leave France, where I was living and teaching, for a few years teaching in Morocco, I had to have some vaccinations for this. I had just one injection, but I do not remember what it was for now. I just remember that I came back from the surgery and passed out in the hall of my apartment. Obviously I came to and was alright the next day. I spent three years in Morocco, down in the south, Ksar-es-Souk. I was alright throughout those three years, but did find it quite difficult.

When I was diagnosed with breast cancer, I had to have a one in a lifetime pneumonia injection and I was fine with that.

Recently in the UK they were vaccinating against shingles. I have a friend who had a terrible time with shingles, so I felt tempted to have one. I was a bit concerned about the fact that it was a live vaccine and in the end, especially when people were being told not to have one, if they had a compromised immune system, I decided not to have one. It is a long time since my diagnosis but who knows for sure what the cancer treatment has done to my immune system? Raymond had the vaccination and seems fine.

If I were you I would ask what diseases you are being vaccinated against. India is not exactly a very hygienic country and is crowded with people, but I presume you are not going back-packing!!!

I know that in Morocco we stuck to bottled water and cooked food. We were advised not to eat raw food and to wash all fruit and vegetables in permanganate. In Morocco some of the men teaching with me, and were not vigilant, ended up with Hepatitis B.

I would be interested to know what vaccinations are being recommended.

I was glad to see that you have got to know Angie and that you are helping newcomers to get through their treatment.

I would be very interested to know about the details of your travels through India.

I know that after the teaching year in Morocco I was very glad to go for a holiday in Sweden, Norway, Denmark and Holland. In Ksar-es-Souk it was 45C in the shade.

Sending you best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Angie,

I was glad to read that you are progressing with your Taxol treatment. It will soon be behind you.

I do hope, also, that your wound will heal completely.

Did you think to ask what significance tubular has, if any?

I do not know why a patient cannot put stage 1c on their details. Perhaps it is something you should ask the Moderators.

Keep looking forward.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Kath,

Thank you for your post. It will take a long time for aches and pains from Taxol to disappear. As for peripheral neuropathy, I was told it would not go away but I remember from the posts that, apparently, for some, it does.

Remember, Kath, it is early days for you and it is quite normal to be worried about aches and pains. The answer to this is to get it checked out if you have real concerns.

Thinking of you and sending best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Marias,

I was sorry to read that pills and cream have not done anything to take away the redness in your breast. You need to get a definite answer from your doctors about why it continues to be red. They have to have an answer.

If that were me, I would not start radiotherapy until you know why you still have that redness.

I am not surprised you feel tired. The common side effect for all of us as we go through cancer treatment and for a long time afterwards, is "TIREDNESS". It will take a long time to disappear.

Try to walk as you can without getting exhausted.

Thank you for the lovely photograph. Post us more if it is good therapy for you. Do whatever you can that makes you feel relaxed and happy.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I was glad to see that the thread kept active during my past very busy few days.

Hello InspiredbyDolce (Debra). We have not heard from you in a while. I do hope all is well.

Mary, are you also having some very busy days?

Rhonda, where are you at the moment?

Pam, how is all your keeping fit going? I heard on the news this morning that many people in the UK barely make 10 minutes of brisk walking in a month! Can you believe this? It is no wonder we have a huge problem of obesity.

4everStrong, what news from Paris?

We are not hearing much from the newly diagnosed, except for Angie.

Hello to Kathy28, Maria12,Galway and Katy420. Please let us know that you are alright and whether you have decided not to post.

Hello Valstim52 and Lou. Thank you for your contributions to the thread.

Best wishes.

Sylvia xxxx

marias245071

hello Kath my oncologist send me pills of B6 VitAmins that take the neuropathic away.

Abrazos

Marias

marias245071

hello Kath my oncologist send me pills of B6 VitAmins that take the neuropathic away.

Abrazos

Marias

marias245071

hello Sylvie.

Thanks for.yours words. Reading about your time in Morocco it has to be really great and marvelous time.

I never went to Arabic country.

Have a nice day.

Abrazos

Maria

marias245071

hello Kath my oncologist send me pills of B6 VitAmins that take the neuropathic away.

Abrazos

Marias

Lou2016

Kat - Just like you, I am also scared of every aches and pains. I am also scared when my energy level seems low. I am also worried for my mammogram appointment on 25 Sept. I am constantly checking myself for lumps. I found my lump and the fear is always there.

Angie - Thank you for our kind words. I am sorry that you have to join our thread but you will learn a lot of useful things here.

Marias - Lovely photograph.

Sylvia - Thank you for always reassuring. It means a lot to me. I guess, this is what I have been reading about being "a new normal" for us, constanly being on the lockout.

Mary & Pam - Hope all is well with you.

Here is what keeps me busy this days. To pass the time and to keep me from overthinking a lot of things.

I haven't completed it yet.

Keep well everyone.

Best regards,

Lou

marias245071

Bello Lou beautiful thing you do with yours hand

Kathseward

hi adagio

I work in public health and deal with infectious diseases and vaccination all of the time.cholera typhoid and hep b are probably the most import vaccines for u to have before travel as in some areas of India they are endemic. All of the vaccines are not live. Tb can also be a problem as it is a high incidence country but it is actually a very hard disease to transmit so it's really about making sure u are in adequately ventilated areas when people have a productive cough. Happy to chat more if u have any querie

marias245071

Hello Sylvie and all of you.

Next Wednesday is my thyroid biopsy. I have in the right part two nodules with calcification. I hope anything bad happened this time.

I did not start the radiotherapy because the redness around my nipple don't go. Next week the oncologist will look at it.

I have my bones density after I begin the femoral pills. The doctor give me today 90.pills. and some .information about the secondary effect.

I take a picture of some flower really exotic. Is a flower of a tree.

Has a nice aroma. But the people con not eat it. The flower and the fruit came out of the trunk of the .. tree

abrazos

Marias

marias245071

The tree

---

Angelica25

Lou,

That's awesome. You are so talented

Marias

I've never seen anything like it. The flowers are beautiful. I'm sending positive thoughts your way. I'll keep you in my prayers

I saw the wound care doc yesterday, I don't need the wound vac. Yay a! It's an inch deep and open for now we are just going to do daily dressing changes and hope that it heals by the time I finish chemo.

Angie

adagio

kath - I am going on an organized trip, so will be staying in 5 star hotels and eating only in the best of restaurants. I really prefer not to get any vaccines, but I am leaning towards hepatitis A, and typhoid injection rather than the oral which is a live vaccine. Correct me if I am wrong, but isn't hep B only from sexual contact and needles? I have not had tetanus since a child so am considering that also - I will take Dukoral for the cholera.

Thanks for your input - it is very much appreciated

adagio

Hi Sylvia - yes - we are off to India in a few weeks time. It is a place that I have always wanted to visit, so I thought that while I am reasonable healthy and mobile that this is the time to do it. I want to experience "culture shock" with all the different smells, sights and sounds. It will be quite the experience.

I am at heart quite opposed to vaccines. I have not had any shots since childhood - so if I do get the recommended ones for India, it will be quite daunting for me. Hepatitis A and typhoid are what is recommended, but not mandatory. Food and water borne disease is the main issue in India. I would possibly need a booster for tetanus since it has been a long time since I had that. My problem is that I know if I go to a travel clinic they would tell me to get everything and I do not want everything!!! It is a dilemma which I am working through at the moment. Hopefully things will become clearer for me soon.

I have never had the shingles vaccine, pneumonia vaccine, and never a flu vaccine and I think my immune system is quite good these days. I do not get unwell very often at all.

I will be going to Delhi, Jaipur, Ranthmore National Park on a safari. I will go to Agra to see the Taj Mahal, visit the Great Ganges and take a cruise there. Then we will fly to Mumbai for 2 days where we will go on the slum dog millionaire tour and some elephant caves.

It will be a packed 2 and a half weeks. I plan on being cautious about food and drink - and of course it does help that we will be on an organzied tour staying only in the best of hotels and eating in excellent restaurants.

After this trip, I need to stay home for a while. My home needs a good declutter and organization - because I have been travelling so much, these ongoing things have fallen by the wayside.

I wonder what shot you got for Morocco? I have heard that shots can make people quite ill and that is why I am opposed to them, but I may have to change my mind for this trip, since if I got sick, it would be pretty miserable. Of course, one can still get traveller's diarrhoea even after taking the shots. Big decisions for me.

Hope you are well. Have a great weekend.