Calling all triple negative breast cancer patients in the UK
Comments
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Marymargaret,
Great news on your scan(s), you must be so relieved! And also I am so glad your little girl is doing so well. Sounds like chemo starts very soon for you, I am a little past the halfway mark in my chemo. The first one was a doozy but then they adjusted the meds and it's been do-able. You are blessed to have a strong, supportive husband and family, they will help you through it.
Sylvia, my very first treatment was with all 3 drugs; the Taxotere, Cytoxan and Adriamycin. I didn't tolerate it well so they dropped the Taxotere till I was finished with the other two. So since I already had 1 dose of it I only have to do 3 doses at 3-week intervals. If that doesn't go well they will switch me to the weekly dose of Taxotere. But they think it should go allright. I had learned what to expect from the AC, now will have to learn the T!
And Sylvia, I got my copy of "B is for Breast Cancer", I read it when I can. You are right, she has a very humorous way of looking at a serious situation! I was interested to read that she was in the hospital for a week after her mastectomy, until her drains came out. Is that really the norm? I was only in the hospital 1 night, I had to take care of my drain myself. A friend of mine went straight home after surgery, but she had a lumpectomy.
Marymargaret, I'll be thinking of you on the 13th as you start your treatment.
Best wishes, Mary
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Hello Maryna8,
I do hope you will be alright as you go through the next part of your chemo treatment. Just go there relaxed and do not think about side effects. Deal with them if they happen. You can do this.
I was glad to know you are reading B is for Breast Cancer.
I think with this disease it is good to have some humour. During treatment I think it is a good idea to read things or watch things that make you laugh.
Thinking of you and wishing you all the very best.
Sylvia xxxx
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Hello everyone,
I was wondering what has happened to our dedicated group of posters. I hope all is well with you and that you will post to support maryna8 as she goes through chemo with Taxotere on June 11th. I also hope you will support marymargarethope, a fellow Brit, as she starts chemo on June 13th having had her baby delivered on May 28th.
Carolben, I was wondering how you are getting on with your Xeloda treatment for mets. I know someone going through treatment for mets that is in the spine, the liver and now in the brain. What would you think is the best treatment for this? This person is triple positive. Have you any ideas?
Has anybody heard from Jackpot (Gill) since she came back from holiday?
InspiredbyDolce (Debra) seems to have disappeared.
Hoping to hear from all you faithful posters. If you have decided to move on, please let me know.
Best wishes to you all.
Sylvia xxxx
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Dear all,
It seems that a lot of you are on, or have been on taxotere for chemo, yet I was told they will only prescribe it to me if the FEC does not show a significant decrease in the size by cycle 3. They want to shrink the tumour to 5 cms. Why not start me on the big daddy straight away? I will also ask the question on Thursday when I see the doctor but was wondering if any of you guys might have an opinion on it.
I am learning so much!
Thinking of you mary for Wednesday.
Marymargaret
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Hello Marymargarethope,
I was interested in what you said in your latest post. I think the answer about Taxotere is something you should get from your oncologist. You have to remember that although the standard orthodox treatment for breast cancer is chemotherapy, surgery and radiotherapy, each person is individual and their cancer is personal and the oncologist will work out exactly what they think will be best for you. Your oncologist will decide what combination of drugs and for how long.
If it were me, I would take it one treatment at a time and see what happens with the tumour and how much it has shrunk. From my own experience, I did the every-three week regime and on the day of my chemotherapy I first had to see the oncologist or her registrar, and the tumour was measured. I then went over to the actual chemotherapy ward and was told the bloods were OK and I could proceed with the treatment.
Your team has said that they want your tumour to shrink to 5cms on FEC, so wait and see whether this happens. If it does not you will get the Taxotere anyway. Chemotherapy is done before surgery to shrink the tumour to make the surgery easier than it would be with a large tumour.
You must feel free to ask any questions you feel you need to ask. You could ask whether they are trying to spare you too much chemotherapy because you have just had a baby. You need to ask if the cost of Taxotere comes into it, because I feel strongly that cost should not be a reason for not giving certain drugs.
I hope this helps. You need to go to your chemotherapy on June 13th with peace of mind and confidence that the very best is being done for you.
Remember, once you start chemo you must drink as much water as you can, you must rest as much as you can and you must keep looking forward to the time when you have finished this difficult treatment and can join all those women who have ben through it and returned to a normal lifestyle. Remember to take the medications that you will be given to take on the first few days after treatment.
Thinking of you.
Sylvia xxxx
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Hello Maryna8,
I hope you are resting well today in preparation for the second half of your chemo that begins tomorrow, with Taxotere. If you feel up to it please post and detail any side effects from which you might suffer. W know that the most common side effects are hair loss, tiredness, sickness and a low resistance to infection. You need to avoid crowded places as much as possible and keep away from people with colds, flu and anything contagious.
How is you husband doing?
I do hope you manage to sleep peacefully tonight.
Best wishes.
Sylvia
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Hi, Sylvia!
Just wanted to let you know it has been the opposite of restful today. I took my husband to have an ultrasound on his arm, they wanted to check where they did surgery to make an access for dialysis whenever it comes to that. He has been very short of breath this week so I had to run up to the 2nd floor, down a long corridor to the surgeon's office to get a wheelchair. Then push him to Imaging; then back upstairs to the surgeon where we had an hour-long wait. Then reverse process with the wheelchair including pushing it back up when finished. Then to the grocery/pharmacy to pick up prescription drugs and a few food items. I bet you are wondering why I didn't have someone come along to help me. I just didn't think of it,actually. When I am feeling well I don't think about needing help, and since it's the day before chemo I am feeling pretty well. But I am tired now and I will rest tonight and tomorrow after chemo......I have a friend to drive me and hopefully my husband will feel okay. He has another appt. Thursday but his son will take him.
I will make an effort to post about the chemo effects.
Marymargaret, I don't know the answer to your Taxotere question either. As Sylvia said, we are all different. A friend of mine who is going through chemo now is not getting the Adriamycin, and she doesn't know why. But I bet there is a reason; the doctor will tell you; or maybe the nurse will. I hope all goes well for you, we can do this!! I'll be thinking of you.
Talk to you all later, Mary
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Hi Sylvia
I am way behind on the posts. Alex and I have been viewing houses for him to buy. Hopefully today he will make an offer.
I have got the website up and running and I have loads of research news from the recent ASCO meetings. I will try and get them posted over the weekend.
Michael
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Hi Marymargaret,
Congrats on the birth of your beautiful baby daughter. I was lucky to have the anticipation of my grandsons birth to keep me going throughout my chemo.
I too was given FEC but had mine after surgery.
I spent yesterday afternoon with a young women who is Tn and she had her chemo first, then surgery. She finished treatment a couple of months ago and we were sorting out some pretty underwear for her to buy so that she could feel good about herself again. She is doing well and looking forward to 2 family weddings this summer.
I was not offered any chemo but FEC so I am not sure how they decide but from being on this forum I have learned to keep asking questions until I am satisfied with the answer.
One side effect that I did have was a very sore throat and so I would suggest sucking ice as the chemo is administered, pineapple is good or glacier fruits to keep your mouth moist. Also to pay attention to oral hygiene with mouth wash or whatever you use. I used Kin but there are other types or natural ways, even salt and water.
Wishing you luck today and thinking of you.
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Hi Sylvia,
I am just taking a break from holiday packing and making curries and granola for Damian to have whilst I am away.
I am rubbish at packing practically, I often think that there is a niche for a business venture where someone could show you how to pack especially with the weight restrictions. That is why I like going to France with the car.....I can throw everything in! My doctor said to be very careful of the sun and I have packed lots of sleeved floaty tops and trousers.
We have a busy few weeks and I have been trying to catch up with things since Oskar went home on Monday. Unfortunately I had a bout of gastroenteritis on Monday and I still feel not 100%. Disappointing because I was looking forward to tasting all the Turkish food.
I hope that your brother is doing well now as it is frustrating enough to be a patient yourself but when you are helping a relative to navigate the system it is doubly so.
My sister in England had the test for Ovarian cancer. She had some symptoms, bloating etc and mentioned my cancer. It came back Ok. I have tried for the test here but they wont do it because of cost. Ironic.
I see that the weather is to be sunny and all the gardens are looking so well and full of colour. My broad beans are coming out at last and potatoes growing well. I hope to have some ready to eat by the time that I come back.
Thinking of everyone going through treatment, rest and take whatever medication you are given.
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Hello Maryna8
You certainly had a very hectic time the day before your chemo was due. Do not be afraid to ask others for help. They will be only too glad to lend a hand. Remember also that you can also ask for help from cancer charities.
I do hope everything went well with your chemotherapy on June 11th and that you are not feeling too bad.
I do hope you will not suffer too many side effects and that you will not have any problems with white blood cells, red blood cells or platelets and that you will be able to sail through your treatment. Remember to rest as much as you possibly can and to get in touch with your hospital if you feel unwell.
Wishing you well.
Sylvia xxxx
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Hello Michael
It was nice to hear from you. I hope everything goes well with Alex in the purchase of his house. House buying is quite a stressful time.
I look forward to reading any new information that you may be able to give.
We are having some sunny warm weather at last and the seafront is very busy.
Keep well.
Best wishes.
Sylvia
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Hello linali (Lindsay)
I do hope you will finally get everything into that suitcase and that you will have a lovely time in Turkey. Let us know what you think of the food.
My brother seems to be fine now but Raymond has had a nasty bacterial infection. He still has a bad cough. I am making him suck Olbas pastilles. He has been on antibiotics.
I am very concerned about treatment being withheld on the grounds of cost. Prevention treatment is always less costly than full blown treatment after developing something. I think our NHS now has a lot of problems and all the frontline cuts have not helped. There are not enough doctor or nurses to cope with the growing numbers of patients and there is too much waste. Certainly, in England, we are overpopulated and it is destroying our quality of life.
Summer seems to have arrived here finally and the gardens are looking very colourful.
Have a good holiday and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
The research page is up to date now and can be found at
http://www.janettecollinsfoundation.org/page16.ht...
I am glad to hear that your brother is getting better. Have you anything nice planned for the summer?
Michael
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Hello Michael,
Thank you for posting the link with the latest research that you have found. I hope everyone will take the time to have a look.
We have not anything specific planned for the summer. We do not go away on holiday any more but we tend to have outings in Devon and perhaps day trips to Cornwall. We feel we have everything we need here. We did a lot of travelling in our younger days!!
Here in Exmouth, especially on the seafront, there is very much a holiday atmosphere when the weather is nice. Exmouth is also very busy at the moment as we have all the holidaymakers staying at Sandy Bay Holiday Camp. During the holiday season, May to October, there can be 18,000 people staying there. They are very recognisable in the shops. Whatever the weather hey are in full holiday gear!
Have you any plans? Are you keeping well? How is life in general?
Best wishes.
Sylvia
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I have found an interesting site, makes this triple negative diagnosis a bit more positive, especially when all you seem to read is 'poor prognosis.' Makes me feel sick whenever I read that. Reading this made me feel so much better.
http://nosurrenderbreastcancerhelp.org/breastcance...
However, starting that chemo on fri made me feel great too, just visualising that stuff working around my body, zapping the nasties! Hope you are not too ill mary 8. I want that taxotere!
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Hello Marymargarethope,
It was nice to hear from you and I am glad that you are feeling positive. That is the right attitude to have. I did look at your link and was pleased to see that it was reiterating everything that we have said on this thread over the nearly four years since I started it.
We have always said that there is much to be positive about being triple negative and we should ignore all the sites that have nothing but doom and gloom to say about it.
When I was diagnosed nearly nine years ago on Friday June 20th I tried to ignore all the poor prognosis business. I realised I was being told that it was a poor prognosis wholly on the grounds that my tumour was not oestrogen or progesterone fed and I could not be given hormonal treatments such as tamoxifen and Arimidex because they would be of no use. I was glad that I would not be spending years on these drugs with all their nasty side effects. As for being HER2- I was glad about that too, because it meant I would not have to be taking Herceptin with all its nasty side effects.
I too had read that chemotherapy was very effective against breast cancer with triple negative receptors. I certainly was afraid of chemotherapy but once I started the treatment I was fine, just concerned about what the drugs might be doing to my body. The worst thing was loosing my hair but I learned to live with it.
As for what they say about triple negative and how the risk of recurrence diminishes after four or more years, I am not sure where that comes from. They are probably keeping some kind of statistics. If this helps people to feel good, then there is no harm. I can only say that after nine years I still take nothing for granted. I try to look after myself in every way possible, especially with what I eat. Looking through a medical book yesterday I read that 35% of cancers are caused by diet, followed by 30% due to smoking. That is quite a chunk.
I do hope all goes well with your chemotherapy treatment which started on June 13th. I do hope you will get through this treatment without too may side effects. When is your next treatment due? I hope at each blood check up before chemo all your blood cells will be in order and that you will sail through each treatment. Keep up the goof work.
How is the new baby going?
Thinking of you.
Best wishes
Sylvia xxxx
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Hello Maryna8 (Mary),
I hope all went well with your docetaxel (Taxotere) on June 11th.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Baby is doing brilliantly, had some cards sent home from work from the children I teach and they pointed out that Evie means life, how apt! Hopefully she will be home soon, it will be lovely to have her here and so much easier too.
I have been looking at diet and exercise as a point forward for after treatment. Do you follow any sort of diet plan? Do you have any tips to keep the Larry at arms length?
Chemo was fine and not feeling sick at all but the tiredness is no joke! I can sleep through three children making loads if noise and telly!
Blessings,
Marymargaret
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Hello Marymargaret,
I was glad to know that your baby is doing well and I do hope it is not too long before Evie is home with you.
You asked if I had any special diet. I just try to eat very simply and food that is healthy. I base my everyday nutrition on fruit and vegetables, with special emphasis on blueberries and broccoli but I do believe in getting as much variety as possible and eating everything in moderation. I eat wholemeal bread, oily fish, some North Atlantic cold water prawns, all kinds of nuts, some seeds, I drink unsweetened fresh soy milk enriched with calcium, and I eat fresh plain soy yoghurt. I steer clear of meat and dairy products. I do not drink any alcohol and I steer clear of sugar. I had a pretty healthy diet before the breast cancer. I do not eat any junk food. I have been drinking four to five mugs of decaffeinated green tea for nine years, ever since I was diagnosed. I occasionally have the caffeine green tea and really love leaf green tea. I never drink it on an empty stomach.
We have had lots of discussions on this thread about nutrition and many of the women that used to post were very interested in all aspects of food.
I do not do any specific exercises but I do a lot of gardening and keep active during the day. I think the secret is not to be too sedentary.
I think that tiredness is probably the most common side effect of chemotherapy and while you are doing it you have to learn to rest as often as your body tells you to and not attempt to keep up the same level of activity as you would normally have. Rest is very important because your immune system is under stress during chemotherapy and rest enables it to strengthen.
I was glad to know that you are not feeling sick or nauseous. If you take the medication you are given for the first few days after chemo, you should be alright. I did not experience it but I know a lot of women do.
You might be interested in reading and keeping for reference the excellent book "Understanding breast cancer" by Professor Mike Dixon and published by Family Doctor Books in association with the British Medical Association (BMA). There is a very good chapter on chemotherapy. On one page it says the following under Side Effects of Chemotherapy: "Chemotherapy drugs are active against all dividing cells so tissues such as bone marrow, hair follicles, and the lining of the gut and bladder are all affected by chemotherapy and this explains why it causes unpleasant side effects. There are now treatments to combat most of the side effects."
It then lists them on pages 153 to 164. It seems a lot but remember you will not necessarily have these side effects.
I hope this helps. if I can help in any other way, please let me know.
I was interested to know that you are a teacher. What age group do you teach? We have had quite a few teachers going through this thread and that includes me.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
The thread is very quiet as regards posts, but still busy with views. I am wondering where all the regular posters are. I think you may be on holiday or just enjoying the warmer weather if you are in the UK. Please remember the two Marys who are going through chemotherapy and how you felt when you were going through it. I hope to hear from some of you.
Thinking of you all.
Sylvia
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Hello Michael,
I have just been looking on the Janette Collins Foundation, having clicked on the link that you provided. There is a lot of information there. I was wondering whether, having done all that research, you have any thoughts as a way of a summary. Do you think there has been any real headway as a result of all the research? From what I read on the threads the same chemotherapy drugs are still being used for treatment. Do we really know the causes of this particular cancer? I would be most interested to have some of your comments.
Wishing you all the best.
Sylvia
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Hello everyone,
I thought it might be a good idea if regular posters could let us know that they are fine, perhaps taking a break, on holiday or moving on.
Has anyone heard from Jackpot (Gill)? To Gill: if you have decided to move on let us know. I have just bought a copy of he Moaning of Life by Karl Pilkington. I like to read it out loud to Raymond. It s a good tonic as we are going though some stress at the present time. How is your niece getting on?
Hello to Normandee (Norma), linali (Lindsay), Carolben, Susaninicking and adagio.
I am wondering what has happened to InspiredbyDolce (Debra), as she was such a prolific poster. I am also wondering what has happened to peterandliz and sam52. I hope you are OK and enjoying the sunshine.
Best wishes to everyone.
Sylvia
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Hello Sylvia
I thought I would just write a quick post to you - I caught up with all the posts this morning and realise some of us have been lying dormant! I am pleased the two Mary's treatment is underway. Although Chemo is a frightening prospect initially the positive benefits it offers us TNBC girls must outweigh the less favourable side-effects. Good luck to the two Marys and everybody else going through treatments.
Have been so busy recently. However what I am thrilled about is my energy levels are increasing all the time since my treatment finished and I have performed all my 'duties' with a spring in my step! I am getting a real sense of life returning to normal after cancer. I do hope these words give those starting out some encouragement. It can feel very overwhelming in the early days but the passage of time can be a wonderful therapist.
My girlfriend with 'the arm' who you may remember me writing about has her last chemo (Taxotere) tomorrow and is booked in for surgery. Ultrasound has shown a 50% reduction to her tumour and what is left appears to be scar tissue. We have booked to go to Arras in France for a weekend in November when her radiation is over to celebrate!
I am sorry to have been quiet but what with end of term productions at school, my mum (who is getting increasingly demanding of my time), and my daughter's house move it has been hectic. Furthermore the garden, which is so beautiful presently with an abundance of roses, is a rather demanding mistress!
I wish everyone going through treatments well, and hope Sylvia your brother is now much better. I am sorry to learn you and Raymond are experiencing stresses presently and hope you find they resolve as soon as possible. You are always so supportive when others get stresses so I really hope yours are soon gone.
Love Norma
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Hello Norma
It was nice to hear from you.
I was glad to know that you are getting back to normal and have more energy. It is very important after finishing all the standard treatment to get back to some kind of normal routine and to try to put cancer in a dark corner somewhere as much as possible. We do need people to stay on the thread after treatment if they can to help others. Our thread is very quiet at the moment as far as posts are concerned, but many are still viewing.
It is good news that your friend is now doing well and it is a good idea to have a celebration booked up for when she ends her treatment. It is something to focus on and get her through to the end.
I understand that you are busy with other commitments and I know how demanding they can be and just how much time they take up. Always remember to look after yourself as well.
Thank you for your concern about the stress that Raymond and I are going through at the moment.
We are having a catch up day today and trying to make more time for ourselves beginning next week. We are going to try to get out walking more and generally to have a more relaxed lifestyle.
That is all for now. Thank you for your contribution to the thread.
Fond thoughts.
Sylvia xxxx
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Hello Norma
I forgot to say that it is nine years today since I was diagnosed with breast cancer. It does seem ages ago now, but I do remember very clearly all that happened at the various stages of my treatment.
I hope that my nine years survival since the day of diagnosis on June 20th 2005 will inspire and motivate others.
Thinking of you.
Sylvia xxxx
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Hello, Sylvia.
I am checking in from Day 10 of my Taxotere treatment. You said you were interested in side effects I experienced. I do find it different than my Cytoxan/Adriamycin treatment. With those drugs the main effect was extreme fatigue. I still have that but also have mouth issues, as in sore tongue, bad taste, dryness. I did have a lot of pain, bone pain and muscle pain that traveled around the body. I have tingling in my feet and hands and sore heels. I am eating and have not lost any weight, but food has no taste for the most part. I bought a watermelon yesterday and was so looking forward to it, it was disappointing when I actually ate it. My chronic sinus problems are worse, I have an almost constant headache and runny nose, but no elevated temperature. So that's about it, I will keep on keeping on.
I am sorry to hear that you and Raymond are having some unpleasant stresses, I hope that gets resolved soon. And I love hearing about your nine-year survival time!
Thinking of you in Exmouth!
Mary
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Sylvia - you reaching 9 years from diagnosis certainly motivates and inspires me. In terms of cancer I think I am doing well. I am finally getting relief from my shoulder and arm pain which was caused by my 2 bad falls earlier in the year - I went for 4 full months with very little sleep and I can now sleep which is heavenly. Yesterday I had surgery to remove a cataract from my (R) eye - I was practically blind in that eye. The surgery went well - now the surgeon wants to do the other eye even though there is only a slight cataract there - I will have to give that much thought. Life is moving along. I am busy planning 2 weddings just six weeks apart, so it is a busy time for me. I do read the threads most days. Glad that you and Raymond are deciding to embrace a more relaxed life-style - there's nothing like it. Look after yourself!
Maryna - I got the travelling pain while I was on a taxane - mine was taxol, but the side effects are somewhat similar. I felt like a human target for a sling shot - I just never knew where the pain was going to be next. Fortunately that is all gone away. I lost all taste as well, and I only ate because I knew I had to - taste does come back. I was fortunate that I didn't get the sore mouth, but I did rinse with baking soda every time I ate anything. The doctor also prescribed a magic mouth wash, but I never needed it. Hang in there - soon it will seem like a distant dream. In terms of the tingling, I iced my hands and my feet during the treatments - I think it helped a great deal.
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Hi, Adagio! It sounds like your life is full as it can be right now, it's always so good to hear from those who have moved on from the cancer and cancer treatment and have gone back to living. Gives the rest of us hope!
I have been given some pills for my sore mouth, they are supposed to fix that up. The traveling pains are gone for now, they will probably be back next treatment. I considered the icing of the hands and feet. I have Raynaud's Syndrome though, where my hands especially can't tolerate cold, so I wasn't sure that was a good idea. I may try to work something out for my feet next time though, and suck on ice while the Taxartane is going in. It can't hurt, I don't think. I talked to a doc and to an apothecary about my sore heels. The doc had no ideas, the apothecary said he could mix up a topical potion that would help. So that is my next move as far as the heels are concerned. Anything to get through this that will help. I have the magic mouthwash too, it numbs my whole mouth for a while, a good thing!
Thanks so much for the words of encouragement and for sharing your experiences. I can't believe you are planning 2 weddings at once, what fun! Are they completely different styles and settings?
Best wishes, Mary
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Mary Margaret, hello!
So glad your baby is doing so well, she may even be home by now? Happy days!
I had to smile when I read how much you wanted the Taxotere, I wanted to reach out and say "Here, take mine!" It has some unpleasant side effects, but I guess all the drugs do; just part of it. Have you talked to the doctors about whether or not you will be getting it at some point?
The article you linked to is good, gives us all a bit more positive outlook. I am reading a book now called "Anti-Cancer; A New Way of Living".(that's close anyway). It stresses the importance of diet in our lives and makes a lot of sense. It provides a lot of examples of people who have started eating properly and de-stressing their lives as much as possible. The way of eating he recommends is really the way Sylvia eats, I meant to tell her that. Very little meat and no dairy, heavy on fruits and vegetables, lots of green tea and no sugar. There is more than that but that's an example. I have started doing some of it, I haven't quite figured out yet how to get enough protein without meat. My body seems to demand a lot of protein, even in normal life; it's been crazy on chemo. So I am sticking with some meat. My husband is not supposed to eat a lot of meat either, no more than 5 oz. a day because of his kidneys.
Well, I didn't mean to go rambling on, it's a work in progress, this life of ours.]
Glad for your family and for your positive outlook on the chemo.
Mary
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