Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio, Kath, Lou, Marias and Angie,
I have just been reading all your posts and they are all very interesting. I was glad to see that you are all talking to one another.
I shall try to sit down this evening and reply to you all. I must say Lou that your work is amazing and Marias your photographs bring great happiness.
Here in most of the UK (not Scotland) it is a Summer Bank Holiday and a very busy time. It is the last public holiday before Christmas. Exmouth is really busy and a time for us natives to stay home!
I shall talk soon.
Best wishes to all of you.
Sylvia xxxx
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Hello Marias,
Thank you for your post.
It was a good experience in Morocco but there were some difficult times. I did love the teaching. I had wonderful students who had a great thirst for knowledge.
Best wishes.
Sylvia xxxx
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Hello Marias,
Thank you for your post and for the beautiful photographs.
I can see that you are being kept very busy with all the problems connected to your breast cancer. I shall be thinking of you next Wednesday, August 30th when you have your thyroid biopsy. I do hope you will have good news. Reading your details, I saw that your breast cancer was in your right breast and now you have problems in the right side of your thyroid. I picked up on this because my breast cancer was in the right breast, and it was then discovered that I had a problem with one of the parathyroid glands, the lower right, which turned out to be a non-malignant adenoma. I had surgery after I had finished my cancer treatment. The adenoma and the faulty parathyroid gland was removed and everything was fine.
I was glad to know you have not started your radiotherapy because of the redness around your nipple. Be sure to let us know what happens when you see your oncologist next week. What day are you going?
That is all for now. More later.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
I am writing about the fact that you are going to start your anti-hormonal pills. If I were you I would insist on having a bone density scan (DEXA scan) BEFORE you start taking the pils. You need to know the state of your bones before starting these pills, because they will affect your bones. If you know what your bones are like before taking the pills, you can have regular DEXA scans to detect any change.
I do love the photograph of that beautiful flower and I am sure it must smell very nice. It is strange that the flower and the fruit come out of the trunk of the tree.
Do you know if this plant has any medicinal value?
Yesterday I was in the grounds of the nursery where I buy plants. I was looking at the beautiful echinacea plants, one yellow and one red. I do take echinacea extract from time to time and especially if I think I might be getting a cold. It always works for me.
Sending you fond thoughts.
Sylvia xxxx
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Hello Angie,
Congratulations on your wound making good progress. I do hope it will be healed completely by the time you finish chemotherapy.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for your post and for all the details about India. I shall be interested to know all about your experience of culture shock. I went through that when I went from France, through Spain to Malaga and then by ferry to Tangiers. The difference was incredible. I might just as well have landed on the moon!
From Tangiers it was on to the capital Rabat, a short training session there, and then the long drive down to the south through the Atlas mountains. I did wonder where I had arrived!
In Morocco there was all the hypnotic music, spices in the markets, the medinas, the call to prayer etc. etc.
Only you can make up your mind about the vaccines. I would find out the most important ones. I have not had that many vaccines. I think I would get the tetanus one if that were me and also TB, hepatitis B (and A). You need to get advice.
I must say I was surprised that you did not have a pneumonia vaccine or a flu vaccine when diagnosed with breast cancer. My oncologist told me to get them straight-away. The pneumonia vaccine is once in a lifetime. I have not had any flu vaccines since. Like you I am not keen on any of them.
It looks as though you have a busy itinerary worked out for your holiday. I hope you will send photographs.
I cannot remember what shots I had for Morocco. I would think cholera and hepatitis, but it is too long ago for me to remember.
Keep posting and look forward to your holiday and then the great therapy of being back hope in clean, clean Canada and some therapeutic de-cluttering!
Fond thoughts.
Sylvia xxxx
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Hello Sylvia,
You are right, it has been a very busy week, so much has been going on or needed to be dealt with. I would like to have no obligations at all today, but I did accept an invite to a friend's birthday dinner tonight.
One of the things I took care of yesterday was having my blood drawn to check Vitamin D level, and some other things as well. Apparently the Vitamin D check is going to be something regularly done here now, especially for women, I think, because of the strong connection it has to bone strength.
Viewing the the total eclipse of August 21 was a great experience, it began at 11:45 AM when the moon became visible moving across the sun. At about 1:15 PM the total eclipse began and lasted for 2 1/2 minutes. Then we could watch the rest of the partial eclipse as the moon moved on. The whole experience was just extraordinary as the world became gradually darker and the birds stopped singing and the breeze stopped. Then for 2 1/2 minutes the sky became an inky black-blue and we could see some bright stars. As the tiniest sliver of sun became visible again it lightened things up and soon we were back to normal, but it really reminded us how small we are in the great universe, and how much beauty is around us that we take for granted every day.
The protest that happened here that resulted in the death of an innocent young woman seemed to me to be senseless. Here you had a very unpopular bunch of people (neo-Nazis they call themselves), who bought a license to rally in a park. Then there was a group of people who came out to probably peacefully protest the rally, and they were joined by a group of people calling themselves Antifa; they wear black hoods and shirts and seem to just as much thugs as the people they are protesting. As far as tearing down the statues is concerned, I agree with you, it will not change history to do this. Along with all this destruction, I have heard that in Berkeley CA at USC the mascot for the sports' team is a white horse named Traveler. As this horse is identical to and has the same name as Robert E. Lee's horse back in the 1800's, there are now calls to remove the horse as mascot. Hopefully they will not call for the horse to be executed! I think there are a lot of people with way too much time on their hands who are only looking to be offended. How ridiculous; almost as ridiculous as the sportscaster named Robert Lee who was removed from reporting on a football game in Virginia because someone might be offended! I am not making this up, it really happened. Sometimes there seems to be no common sense in use at all.
I have not had the shingles vaccine either, it is a very bad thing if one contracts shingles. I was wondering too how much worse the condition might be for someone who already has neuropathy. I have heard the vaccine is only 50% effective, but is supposed to be quite safe.
I have let myself get very far behind in the posts again, the thread has been very busy. I will try to catch up with more later,
Talk to you soon, Sylvia
Love, Mary
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A pic of total eclipse taken by a friend
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Partial eclipse
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Hello Sylvie and all of you.
Thank for.your words Sylvie
I had the bone density scan last. Week. It says a have osteoporosis in my lumbar zone. No in my hips.
I also have the b and d vitamins exam. They are normal.
Mary beautiful eclipse- that nice you enjoyed it..
Is nice to saw all the birds go to sleep when the eclipse happened. And before all the birds wakes up again.
I hope all of.you have a nice weekend.
Abrazos
Marias
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Hello adagio.
I. Hope you enjoy a lot your great trip to India.
Here in Colombia we have to take vaccines to go to the Pacific ocean. Is really near is 105 km from here. I have to take hepatitis A and B. Tetanus and yellow fever.
I really like to visit all the incredible places you are going to.
Abrazos
Marias
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Hello Angelica thanks for your words about my pictures of the tree. I'm enjoying with that a lot lately.
Thanks for your thoughts and prayers I really need it.
I hope you really recover your health before the last chemotherapy. I think I understand you.
Have a nice weekend
Abrazos
Marias
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HI, Lou
You are certainly artistic, the things you craft are just beautiful. And I"m sure your DS will always treasure the toys and books you make for him.
I still get weird pains in my mastectomy site, shooting pains, numbness, tingling and it feels odd when I touch it. The doc said it's nerve damage, since they cut so many nerves during surgery. She has no answer when I ask if it will go away. I do know that, since I have neuropathy from the chemo, nerve damage can cause all kinds of weird feelings.
I noticed you said sometimes you are at a loss for words, I do that too, I don't know if I can still blame the chemo for that, but I think I will! It's like this: I will be writing or thinking and I know the perfect word, but I can't seem to come up with it. So I substitute, and later the word I was searching for will pop up in my mind.
Lou, it sounds like you are doing all the right things for yourself and your family, I am happy for you!
Love, Mary
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Hi, Pam
It sounds like your trip to Scotland is almost here, that sounds wonderful. Adagio is going to India and recently went to Australia, and with all Sylvia's travel history, and my trip to the Mediterranean, and Lou in the Philipines, we are a well-traveled group!
Funny thing about stretching, I was going to a stretching class, and one day I told myself to keep up with the instructor and stretch as deep as she was. I was in pain the next day, and for many days after. I haven't been back since, but i think I will go back at some point soon and stretch at my own limits! I was recently measured for height and my height was almost an inch less than last year! Honestly I think it was bad posture, I have a habit of slumping that I am trying to break. I think stretching would be a great help.
The eclipse was marvelous, words can't describe, although I tried in an earlier post, and added some pics.
It sounds like you are progressing very well along your way through recovering from treatment.
Talk again soon, love, Mary
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Adagio,
You and your husband have lots of energy, you must be so excited about your trip to India coming up. It sounds like KathSeward RN gave you good advice on what vaccines to have done, that sounded very practical to me. Even in a very nice hotel there can be someone in the kitchen who is not as hygienic as they could be. India sounds like a very exotic place, I would like to visit there someday. Have you seen the movie "Best Exotic Marigold Hotel"? I think there are 2 of them, and they are wonderful movies set in India. The butler on our cruise (who was Indian) recommended them, and I really enjoyed them.
Walking every day is very beneficial, I am still struggling with that. I was a huge walker before Cancer and chemo, and now I do walk as much as possible, but I have neuropathy that has caused weakness in legs, and my arthritic knees started acting up this year. I miss walking miles a day, but I do the best I can. I think it is one of the best things we can do for ourselves.
One month to go till your trip! I am excited for you.
Talk again soon, love, Mary
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Hi KatSeward,
I have had peripheral neuropathy since my first chemo treatment. I have found that it is constantly changing in sensation, sometimes my feet will burn, sometimes my ankles will ache, and usually my legs get very tired if I do much walking or outside work. These things can happen all together or one at a time, no pattern really. I do hope your symptoms get better as you move further away from chemo. I also have degeneration in my spine, it causes me pain on many days, but I think I am somewhat used to it.
I think you gave Adagio very wise vaccine advice, I have not been to India, but it sounded very practical to get that limited number of vaccines. I have had Hep A and B vaccines and they are painless. Tetanus, however, I cannot do. I had an anaphylactic episode last time I had one many years ago.
Sometimes I feel, too, like I am waiting for that 5-yr survival mark to get here so I can breathe easier, but then I realize I am wishing my time away. Already there are not enough hours in a day, they go by so fast.
I agree with you, chemo seems to have aggravated all the previously occurring osteo pains and set off some new ones.
But, we are here to talk about it! :-)
Love, Mary
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Hi, Angie/Angelica
I am glad to see you are on the downhill side of your Taxol treatments, and also glad you are not having any bad reactions because of all the steroids they gave you.
How interesting that you were born in India, perhaps sometime you would like to tell how you got here to the US. Only if you want to tell!
Bug spray for India sounds like great advice, we were in Aruba in December and it had had unusual amounts of rain, the mosquitos were very bad. We never dreamed of taking bug spray, it is usually so dry there, but we could have definitely used more than was made available.
I hope the rest of your treatments go smoothly! Love,
Mary
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Hi, Marias,
You do sound very tired, that is very normal right now, you have been through a lot. I think it's wonderful you are walking and keeping your strength up as best you can.
The tree in your pics is very odd-looking and seems to have its' roots in the air, the flower is beautiful.
Good luck for your biopsy on thyroid on August 30, we will be thinking of you and wishing you well. I hope you are clear and can move ahead with your radiation when your nipple gets better.
Hang in there, Marias! You are a very strong woman!
Love, Mary
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Hi, Sylvia,
I see our friend Chris Woollams is back from wherever he was, lots of interesting things for us to read again from him.
Talk to you again soon, love, Mary
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Sylvia
I also saw the updated version of "Far From the Madding Crowd." I thought it was very well done with excellent actors. Even though I know how the story ends, I still wasn't quite sure at the end if she was going after the caretaker! Thank goodness she did!
Mary
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Hello Mary,
I can see that you have been very busy on the thread trying to catch up.
Thank you for the most interesting photographs of the eclipse.
I do keep up with all the news from the US, so I did watch all those protests. I just think that the world has gone completely mad and that everything that is not politically correct is condemned. It makes no sense to be going berserk because of statues. As for trying to get rid of past history, that makes no sense to me. Whatever we think of it by today's standards, these things happened. I do not know why statues have to be erected in the first place. I would think money could find better uses. As far as I can tell, these statues are good resting places for birds and serve them well as toilets! The statues get filthy and then more money is wasted cleaning them up. In this country the latest politically correct brainstorm is to get rid of Nelson's column in Trafalgar Square. I do wish these people would find something more useful to do.
Here in the UK Brexit is about to be hijacked. That tells you how little democracy we really have here. The politicians here are more concerned with getting their rat-ridden little palace of Westminster patched up for a starting price of four billion pounds.
That is all for now.
Love.
Sylvia xxxx
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Hello Marias,
Take care with the osteoporosis. Are you taking anything to treat this condition? Your doctor will probably try pushing bisphosphonates on you. Beware of these.
Keep us in touch as you go through various treatments.
Sending you fond thoughts.
Sylvia xxxx
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Hello Mary,
Yes, Chris Woollams is back in business. I have not read his latest email yet.
I noticed that you mentioned the film the Best Marigold Hotel. It was interesting.
There have been series on the television based on this. Groups of celebrity pensioners go off to various countries to live for a while to see whether they want to retire there. I remember one group went to Florida and another went to India. I think on the whole I am glad to be in Devon. I think when a person lives abroad there is always a desire to be in the country of one's birth. In my heart I shall always be a Londoner, but the London of today is nothing like the London in which I spent my first twenty years. It is very foreign to me now.
I was glad to know you enjoyed the updated version of Far From the Madding Crowd. I really enjoyed all the novels by Thomas Hardy that I read many years ago.
We are going through a bit of a heat wave here. Exmouth is full of holidaymakers roasting on the beach and queueing up for ice cream.
Raymond wants me to tell you that your recent post was the 10,000th one. Congratulations. It is hard to believe that I started this thread seven years ago on September 12th.
That is about all for today.
Thinking of you.
Love.
Sylvia xxxx
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Marias, Angie, Sylvia & Mary,
Thank you for appreciating my handiwork. It is my favorite pass time and I feel fulfilled when I create something useful. My DS love it.
I will be thingking of you Maria's when you go for your Thyroid biopsy. I am hoping for a favourable result.
You are almost there Angie. Hang on and keep going.
Love the photos of the eclipse Mary. It looks amazing. I used to multitask last time but now it is a big challenge for me. I can only do one thing at a time now and I tend to be forgetful. I am not complaining though. I am just glad to still be around and being able to do what I love.
My neuropathy issues at the tip of my fingers and toes have subsided a lot. My MO told me last time that if it stays beyond 6 months PFC it is most likely permanent. When I was in Philippines, I went for a massage and that is when I 1st feel like it was getting better. I can wear closed shoes now. Last time it was like as if I am wearing a very tight shoes.
The ringing on my ears though is most probably permanent. This is from the Carboplatin as per my MO. That is why,I only have 10 Carboplatin instead of 12. He cancelled the last 2 after my genetic test result came back negative.
I was eager to finish the quiet book because we will be travelling to Cambodia this 1st week of September for a week trip to see Angkor Wat. It will keep my DS occupied during the flight.
Best regards,Lou
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Hi Everyone,
Hope you are enjoying the day...
I had my infusion yesterday without any issues, 4 more to go! I wanted to take a minute an vent though. My wound is still 1 and 1/2 inches deep, and 2 and 1/2 inches wide, it's taking a slow recovery time, my wound care doc is not worried about it, but I am. I only have 4 more weeks of Taxol, then 3 week break and then supposed to start radiation but not if the wound is open. I don't think it will heal by then, and in the meantime, I have swelling around my lumpectomy, and now have rib pain so I'm scared. What if it metastasized? Have any of you had these symptoms? I'm supposed to see the BS next week to discuss this. The NP didn't think it did, thinks it's too early, but I'm worried because I didn't have any scans before hand... I'm just having a tough time of things, and getting depressed now. I also read on Doc Google, that if cancer is to mestatatsize it will no matter what, it's either your cells fight off the rogue cell or it doesn't, there is no rhyme or reason, but that doesn't give me hope, so scared...
Angie
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Hi Angie,
I hope they will get this all sorted out for you. It must be very frustrating and adding up to your treatment worries. I cannot say don't worry because I am also worried all the time even now that I am almost 4 months PFC. Keep well and drink lots of water.
We hear you. We are going through with you.
Best regards,
Lou
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Angie - I totally understand your worry about your wound not healing - I would worry too!! Are you putting anything on the wound to aid the healing process? If you had your surgery in May, I think that the wound should be healed by now - I would be curious to hear what your surgeon has to say? I would definitely be a bit more assertive and ask more questions about ways to speed the healing?
I did not have swelling around the incision but I had some lumpy bumps around it. My oncologist assured me that it was scar tissue - I had it massaged by a lymphodema therapist and it is perfectly smooth now.
The rib pain could be coming from the taxol - I got a lot of bone, and joint pain everywhere when I was on Taxol - my body did not like taxol at all - I felt like a human target for someone using small rocks in a sling shot. I was so glad that I only had to have 4 doses of that drug - it was very nasty. I still get rib pain when I lie on my lumpectomy side, but I attribute it to the radiation.
Metastasis is a very real concern - I obsess about it at times - when I get an ache or pain, I think the cancer has spread. I think this is our new normal. I am not trying to minimize your worry, but rather comfort you by saying that for all cancer patients - metastasis is frequently on our mind. My MO told me not to worry too much about an ache or pain until it lasted for more than 2 weeks and does not ease, but gets progressively worse - I have found this a good measure to know when to do something about the pain. Having said that - since you are currently going through treatment, you should tell your doctor absolutely every ache and pain that you have.
Wishing you only the best as you seek ways to get your wound to heal faster. Warm thoughts and healing prayers coming your way.
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Hello Lou,
I was looking at your recent photographs and I wanted to say that I think you have found a very educational and lovely way to keep your young son busy.
It seems that in the group so many people are going travelling that I shall only be able to keep up with it through photographs arriving on the thread. Are you going to Cambodia about Monday September 4th? Mary is going off to New Mexico about that time. I hope others travelling will let us know when.
Thank you for your kind words to other group members.
I am wondering how Marias is getting on today.
As for neuropathy, I still have it in my feet after all these years. It is a numbness rather than anything else. I can understand your description of the neuropathy being like wearing tight shoes. That was exactly how I first noticed it. My oncologist told me that it was definitely from the taxane drug, docetaxel (Taxotere), so I would think the same applies to paclitaxel (Taxol). It seems that as new drugs come out and are used, the side effects seem worse. When I was diagnosed in June 2005, the taxanes were relatively new in the UK. Some say epirubicin (Ellence) and doxorubicin (Adriamycin) are the worst and of course they do cause hair loss. When I was having EC the nurses were calling epirubicin the Red Devil!
It looks as though the carboplatin group is no picnic either. Ringing in the ears is said to be awful.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Angie,
I was glad to read that you had another infusion yesterday and that there were no issues. All this will soon be at an end.
I agree with what adagio said about the wound that has still not healed. If that were me I would be telling my wound care doctor that I am not happy about this and ask if there is anything to put on it that will speed up the process. Is your wound care doctor the same as your breast cancer consultant/surgeon? Surely the person who did the surgery should be looking at this and resolving it. You do not want a problem like this as you start radiotherapy.
You should also get the swelling around the lumpectomy and the rib pain looked into. It is not right that you should have to shoulder all this fear and worry in addition to getting through this cancer treatment. When you see your breast surgeon next week, be assertive and tell him you want all this sorted out.
To take all the worry away, why not have a scan to make sure everything is alright? Anything is better than having worry and your team should understand this.
If I were you, I would stay away from Google. You need to sort all this out and explain all your worry and fears with your oncologist and breast cancer surgeon. Worry and fear are not what cancer patients need and worry will not help your immune system to recover and fight back.
I hope this helps. Be strong, be assertive and fight your corner. This is your body, not anybody else's.
Please let us know if there is anything we can do to help you more.
Fond thoughts.
Sylvia xxxx
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Hi, Angie
I just wanted to chime in with all the voices of experience you have already been reading........after my right-side mastectomy, my scar healed very well, but I had I swelling right under and around it. I went back to the BC surgeon (of course thinking the worst), and she said I had a seroma, which is a pocket of fluid. She inserted a thin canula and drained out some cc's of fluid, I don't remember how much exactly. I came back twice and had that done, and then the next time she did an ultrasound and even though it is still slightly puffy, it is all tissue now and not fluid. Maybe you have such a pocket of fluid? I think Sylvia is right about the rib pain, ask your doc and tell them you are concerned about it. As to the worries, we all live with that, one of the hard things to face is knowing that the worry will always be with us. That is why we have to live our days well and appreciate and enjoy life, and have our questions answered when they come up. I do hope that wound begins to heal better so you can get on with radiation and finish treatment.
Talk to you later Angie, Mary
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