Calling all triple negative breast cancer patients in the UK
Comments
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Yes I am having weekly Taxol.The rash is annoying but the doctor isn't concerned-she said I could go to a
Dermatologist if it gets bad.It is weird how My hand is itchy and red.My finish date for Taxol is the middle of February-with no delays.I have genetic counseling tomorrow.
Rhobd
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Hello Rhonda,
Thank you for your post. I do hope the rash will go, but, if it does not, if it were me, I would see a dermatologist.
Thank you for letting us know the finish date for your Taxol. It probably seems a long way away now, but it will soon come round.
I do hope all goes well tomorrow at your genetic counselling.
Best wishes.
Sylvia xxxx
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Hello Gina,
You have been very quiet lately so I thought I would post to ask if all is fine with your chemotherapy treatment.
When is your next infusion of FEC?
Thinking of you and sending best wishes.
Sylvia xxxx
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Hi Sylvia,
Thank you for your post and good wishes.
There's not much to say about my condition. Generally, I feel normal again. The hair is about 80% gone. My next infusion will be on the 3rd week of December depending on my blood tests. Hope it does not ruin Christmas for me. I feel no SEs anymore maybe because my Filgrastim shots were given two days after my 2nd infusion which stabilized my white blood. My DH did the last two shots for me. To my pleasant surprise, he has gentle hands like a professional nurse
Hope you, Mary, and the rest of the wonderful ladies on this thread are doing fine.
Talk to you again soon. Take care
Gina
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Hello Everyone,
I'm recovering at home after a Bmx last Fri. I am sore and moving slowly, still with drains in, but doing well. Went home the same day of surgery, and stopped taking Norco yesterday. Showers are tricky, and I've hired a nurse to help with that and check in on me occasionally. I don't care for being dependent at all, but my husband is doing a great job with everything. Hoping for drains out soon, and a good pathology report. The surgeon found no visual cancer, and only took one full node and samples of others. I hope everyone else is well today.
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hello everyone, hope you are all ok
I'm pleased to say that I finished my chemo nearly 2 weeks ago now and managed all sessions without delays. It's such a relief to be done and I feel like I'm getting back to my normal self a bit more each day. To celebrate I went to stay with an old friend of mine for a few days last week. She lives in Cumbria, very close to the Lake District National Park so we had some glorious walks a and i felt thoroughly spoiled 😊.
Next step for me is surgery - I'm booked in for a WLE on 19 th December so very pleased to be getting that out of the way before Christmas. Just now working on staying well so I'm in good health for the op.
I think my radiotherapy will probably start sometime at end Jan for 3-4 weeks and then hopefully that should be me done!
Can I ask those of you who have finished your chemo how long it took before your hair started to grow back? I have found, bizarrely, that since I've finished chemo my eye lashes have disappeared!
Chris xx
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Hi Chris,
We have different chemos, but I finished chemo on Nov 1, and the hair on my head has been growing back since then. My eyelashes and eyebrows started coming back in Oct, when I was still getting AC. Just curious, what's a WLE?
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Hi Lily
Thanks for the info about your hair re- growth, I guess I just need to be patient.
WLE = wide lump excision aka lumpectomy. I've chosen this option followed my radiotherapy .
Hope you're beginning to feel better following your surgery. We had similar size tumours and chemo regimes. The use of carboplatin isn't widespread in the UK and I was told by my onc that it improved the odds of getting a pCR and certainly seems to have worked for you - well done 😊. I'm hoping for a similar response too.
Chris xx
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Hi Chris,
We really do have a lot in common. I hope you have a pCR, with nothing for your surgeon to find. We'll all have our hair back before long, and you'll be done with rads too, very soon. I am feeling better every day, and hopeful about the effectiveness of the Carbo. Best wishes for a smooth surgery and a lovely holiday.
Cheers, Pam
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Hello Gina,
Thank you for your post. I was glad to know that you are not doing too badly on your infusions of FEC every three weeks. I do hope you will be able to do the next infusion on the third week of December, depending on your blood tests.
I was really glad to know that you are not suffering from side effects any more and that you feel the filgrastim injections have helped. This is good for others to read and to enable them to ask for these injections.
I feel that, with all that is available to help a patient through chemotherapy, there should not be awful upsetting side effects, although we just do not know how individuals will react. As I have said before, my own experience of chemotherapy was fine, except for the fatigue, and that was without any filgrastim, which was just not offered at the time.
It is good that your husband is helping you through. Having support is so important.
Tell yourself that you are going to enjoy Christmas.
Fond thoughts.
Sylvia xxxx
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Hello Pam (lilyp6),
Thank you for your post and for letting us know that you have had your surgery for a bilateral mastectomy.
I do hope you will make a good recovery but take care of yourself as you have been through major trauma with this surgery. I do hope that all will go well and that you will soon be able to have the drains removed. It is amazing that you were able to go home the same day of surgery. When I had a mastectomy in 2006 I was in hospital for five days and was not allowed home until the drains were clear and had been removed. How things move on! I do remember that, the morning after the surgery, I had a visit from a physiotherapist who showed me some exercises to do straight away.
It is good that you have hired a nurse for help with showers. Like you, I am very independent but there are times when it is good to get help. It is especially important to let family and friends help out, in any way they can. They need to feel useful and involved.
All of us here are wishing you well and that you get a good pathology report.
Take care. Fond thoughts.
Sylvia xxxx
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Hello Chris (ChrisAsh),
Thank you for your post and for letting us know how everything is going.
You must feel very relieved that you have now finished your chemotherapy and that you managed all your sessions without delays.
Chemotherapy is the longest and most challenging part of the breast cancer journey and I think we all feel relieved and happy when it comes to an end. You did the right thing in marking the end and to go walking in Cumbria must have been lovely.
We shall all be thinking of you when you have surgery on December 19th. At least it will be over for Christmas. You are doing the right thing trying to keep well before the surgery. I was told that for this we need to be well hydrated as well. Let us know how everything goes and let us know when you have a date for radiotherapy. You will be given time to recover from the surgery. I remember I had my surgery about May 17th 2006, having finished chemotherapy at the end of April. I did not start my radiotherapy until about mid June and then had three weeks of it with boosters.
As for hair growth after chemotherapy, it starts growing almost immediately but slowly. I did not feel confident to take off my wig for quite a time, about March 2007, but remember always that we are all different.
As for eyelashes and eyebrows, they disappeared when I started docetaxel (Taxotere). They have not really ever recovered properly. They grew back but they are much finer than they were.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I am just popping in to say that I hope the rash is disappearing and that all went well yesterday for your genetic counselling.
Take care. Fond thoughts.
Sylvia xxxx
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Hello Kath,
Just popping in to say that I hope all is well after your last Taxol infusion.
I do hope your cough has gone.
Let us know how you are.
Fond thoughts.
Sylvia xxxx
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Hello Mary (Maryna8),
I hope you are enjoying your break.
Hello Hanieh, adagio, and Amanda10.
I hope all is well with you and that you will keep in touch.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Genetic counseling felt like one more thing to worry about because it can affect my children.It went pretty
Quickly since I was adopted I don't know much about
Family history.My oncologist wasn't scheduled to see
Me yesterday but I insisted she look at the rash.She thinks
My itchy hands are from Taxol but the rash she believes
Might be from the antibiotic.She prescribed a steroid.
I won't get genetics results for 3 weeks. Add diarrhea to
The list after second Taxol.Besides feeling tired I feel
Okay.
Rhonda
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having no 7 now Slyvia. Cough still annoying and a bit of a runny nose but bearable. Hay fever and allergies everywhere because of dust and pollen
Cheers
Kat
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Hello Rhonda,
I do hope you will have good news from the genetic counselling. I can understand what you mean by the genetic counselling meaning one more thing to worry about. That is the downside of trying to be informed.
I do hope your oncologist will be able to get to the bottom of what has caused the rash. It is difficult to work out which chemotherapy drug in particular is causing whatever side effect or symptom. All of these drugs are toxic. My oncologist was adamant that it was docetaxel (Taxotere) the drug that caused my peripheral neuropathy in the feet. Since paclitaxel (Taxol) belongs to the same group, I would think it causes the same things. My oncologist also said that Taxotere was less harmful than Taxol, but who really knows?
I know that I had blushing on the face and hands that would go red almost as soon as I started chemotherapy. Even now the palms of my hands can suddenly go red.
It could be that the rash is a sign of the depressed immune system that chemotherapy drugs cause.
Antibiotics can cause rashes, so it could be that. I do hope the steroid helps. Steroids seem to have become a cure all. It almost seems that when in doubt get the steroids out!
Please let us know the results of your genetic testing.
Try to hang in there.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
It was nice to hear from you. You are doing well and not that long to go now. As you say, the cough and runny nose etc. are bearable, all things considered. They are probably a sign of being run down due to a suppressed immune system. Try to eat healthily to help you keep going.
What are you doing for Christmas? Try to keep focussed on other things as you go through your chemotherapy.
Thinking of you and wishing you well.
Fond thoughts.
Sylvia xxxx
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hi Slyvia
Finished no 7 on Friday and seemed to go ok. Fatigue seems to be the biggest problem. My shoulder seems to improve at the end of each week and want too bad with this dose so I think it's the taxol attacking my poor rotator cuff!
Getting an intermittent rash on my face which is to be expected and the runny nose and tickly cough remains a little scary! I have my family home for Christmas so we will have a traditional dinner with all the trimmings. Baked ham pork and an Australian invention called churkey which is s large turkey stuffed with chicken. Dessert will be pudding made my the royL flying doctor service. It should be quite hot around 35 Celsius so they will all swim
In our pool. Getting closer to the end now. Hopefully if there are no problems my rads will start on 30 th Jan for 4 weeks given lesion was small in Adelaide which is 6 hours away! Still very scared that they may have missed something but taking each day at a tim
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Hi Sylvia, Mary and all
Sorry for not being here for so long. I miss all of you. Things are pretty good with me. Im happy to see this thread so busy and I wish everyone many happy years to come.
Today, my students are having their final exam and while their doing their tests Im here to give my warmest regards to everybody here.
We will get a trip to the North in two days and my next term starts in one week. Im in the process of buying a new car and as it will cost me a fortune I think I won t be able to take foreign trips for a while.
Love
Hanieh
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These are two picture of me and my friends going out for lunch last week. Sometimes there is a need for fastfood
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Hello Kath.
It was good to know that you finished Taxol number 7 on Friday and that everything went alright.
I think probably for all of us fatigue is the main problem during chemotherapy and there is not much that we can do about it. I certainly think that keeping hydrated helps. Even now, when I feel tired, I find that drinking water somehow revives me. More that water, I find that pure coconut water is excellent for rehydrating and refreshing. I also find that a dish of cut up red water melon is good for rehydration. For fatigue, all you can do is rest or perhaps take a short leisurely walk.
I have not heard from many people mentioning a rash during chemotherapy, but they may just not be mentioning it, even though they have one. I would think it is something to do with a weakened immune system or an allergic reaction to something. The runny nose and tickly cough probably occur for the same reason, but if you are concerned about them you should talk to your oncologist. It is always prudent to get things sorted out.
I am glad that you have Christmas with your family to look forward to. That should take your mind off chemotherapy for a while. I was amused about churkey. Here in the UK the shops are doing similar things. I think they are mixing up chicken and turkey with things like goose and duck. What will all the trimmings be? Here people tend to have roast potatoes with carrots and parsnips. In actual fact, roast dinners of all kinds seem to be an everyday occurrence here in the UK and they are probably the most popular dishes, along with full English all day breakfast. I should think most restaurants serve these up all the time here.
What kind of pudding is the one you mentioned? Here Christmas pudding with custard, cream or ice cream, not to mention brandy sauce, is probably the most popular. I forgot to mention the mince pies.
I do not envy you your 35 C temperature for Christmas, but I think many Brits would hop on a plane to have that on Christmas Day rather than our damp sunless days.
Thank you for letting us know the day that you hope to start your radiotherapy. Those four weeks will go very quickly. Since radiotherapy is on a daily basis, five days a week, I am assuming you will have to stay in Adelaide for that time.
We all know the fear that we experience but we somehow complete our journey, and you will do just that.
Thinking of you and sending best wishes.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was so nice to hear from you. We miss you when we do not hear from you. You have made such an impression on this thread.
It was so nice of you to take the trouble to post to us while you are supervising your students' exams.
We shall be thinking of you when you travel north in two days time and hope that you will send us some photographs.
You do not get very long holidays from your teaching but it may be that you have more frequent breaks than we do here. The Christmas break here will begin about December 23rd and things will not get back to normal until after New Year's day and probably about January 3rd.
I was interested to know you are in the process of buying a new car. What sort of car will you buy? Cars are very expensive here in the UK.
Thank you for the photographs. You and your friends all look very happy and relaxed. As you say, even fast food has its place!!!
I have been trying to work out what foods you are eating. Do I see French fries there??!
What sort of things interest you and your young friends? Here everyone seems to be mad about smart phones and tablets. The fashion has been the same for a very long time and I think it needs a change. It all seems to be about leggings, tucked in high boots or with ankle boots, with some kind of tunic. Everyone seems to be dressed the same, even children.
That is about all for today. I am still proof reading the book that one of my cousins is busy writing. It is hard work as I am eagle eyed about grammar, spelling, punctuation and the general style. I am looking for some sort of consistency.
Visit us as often as you can. Take care of yourself and be happy.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia and everyone,
I wish you all a wonderful holiday season,
I would like to share with you my mother experience with her first chemo session of FEC. She experienced several side effects started after 5 hours and we were able to manage it with medications and exercise. She walks for 15 minutes everyday.
Unfortunately, two days before her second FEC she had swelling in her left leg which was a DVT (Deep Venous Thrombosis), now we have to take a Clexane injection twice a day for 5 days.
I wish you strength and courage to continue your journey.
Sincerly,
Lamis
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Hi Lamis,
Sorry to hear about your mom having DVT. I hope she recovers in time for her next chemo infusion. I too, am on FEC regimen, already going for my third infusion on the 3rd week of December. I've had some minor SEs like headaches, loss of appetite, body itch, and constipation that all go away about a week after chemo. Never DVT though. I think yout mom's DVT can be caused by a combination of factors like age, lifestyle, previous/present illness, the chemo drugs which may mess up the blood counts, and even her blood type if she's not O type. It's good that she was diagnosed early and has medications to correct her DVT. I hope she can continue her FEC without delay.
I wish you and your family a happy holiday season!
Regards,
Gina
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Hi Sylvia and all,
I have a fever so my doctor wants me
To get my blood counts checked.I have decided that I will not add the Carboplatin in-I don't think my body can take
It.I am not looking forward to the emergency room
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I have a UTI and pneumonia.White blood counts are good.They will admit me
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Hi Rhonda,
So sorry to hear about your UTI and Pneumonia. Certainly not during your chemo. You really have to be admitted. Take all of your doctor's advice and rest in bed. It is a good thing your wbc is still normal as you said, you should respond well to the infection treatment, hopefully in time for your next chemo schedule.
Be. careful and stay strong,
Gina
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Hi Sylvia and all
Sorry if I cant keep up with all the posts here. Yet, my prayers and deepest wishes are to those going through the rough days of treatment.
Sylvia, I'm planning on buying Hyundia Accent which is somehow expensive here for a teacher to buy. I should spend all my savings in addition to what my husband is giving to me.
About what you asked about the food we were eating, we had pizza , French fries, and fried chicken. It was really pleasing after a long time of avoiding such foods.
Here in Persia all you said are exactly as popular as you said. Smart cell phones, tablets , boots and leggings are the latest fashions. Yet, it's abligatory to have covering over your head for women. And if you are a government worker you d bettet observe the rules even when you are abroad.
I hope everyone be given the freedom of choice in the near future.
Love
Hanieh
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