Calling all triple negative breast cancer patients in the UK
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Hello Michael,
Thank you for sending the link to Janette's foundation. I shall definitely have a look at it later.
Best wishes, Sylvia,
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Hello Jaqueline,
It was nice to hear from you and thank you for that interesting photograph. It certainly had me intrigued!
I was so glad to know that your second chemotherapy went well and I hope it will continue like that. You are doing everything right, especially that all important drinking of lots of fluids. Be sure to give us the date for your next session and let us know how you get on in the meantime.
It was very sensible of you to drink some chamomile or ginger tea, They do work wonders. Having a good sleep whenever you feel like it, is exactly the thing to do. Keep up the good work. Remember to keep looking forward and telling yourself that you are going to get through this.
I am sure we shall all look forward to hearing about your work on renovating the church in the photograph.Fond thoughts,
Sylvia.
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Hello linali(Lindsay},
I hope all goes well tomorrow when you have your mammogram.
Thinking of you and wishing you well.
It is very hot in Exmouth today. It is too hot for me!
Sylvia.
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Hello Gill,
I shall be thinking of you tomorrow and hoping all will go well.
Fond Thoughts,
Sylvia.
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Hello Maryna8 and marymargaret,
I just wanted to say that I am thinking of you and that I hope you are not feeling too bad at the moment as you go through chemotherapy.
Best Wishes,
Sylvia,
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Sylvia - my visit with the oncologist went well - she is very happy with me, so I am good to go for another 3 months - yeah!!! The bad news is that my daughter has to have surgery on her collar bone because the bone is displaced making the gap between the break very wide, so she needs to have a stainless steel plate and screws put into her collar bone - very bad timing indeed especially with a big wedding coming up - so she will have a huge scar and be in a sling on the day of her wedding. I feel for her and wish I could help, but there isn't much I can do except support her and drive her to all the places she needs to go. Fortunately she is well organized with her wedding plans, but there is always a lot of running around in the last few days.
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Hello Ladies, I wasn't sure how to post a new topic, so hope this is Ok tagging on to this. I have a question. I just had the 3rd FEC Treatment and start with docetaxel in 3 weeks time. I have suffered badly from mouth ulcers, so much so, that I had to go to hospital for four days every time. Will Docetaxel be as bad to cause mouth ulcers? Any experience?
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Clementine1, Docetaxel (or Taxatere) will hopefully be better for you, but it too can cause mouth sores, though hopefully not!! It naturally varies from person to person. Sorry for what you are going through! Taxotere
Also, if you need help posting a new topic, please just let us know.
Best,
The Mods
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hi clementine123
Sorry to hear you've had a bad time with mouth ulcers while on chemo it can be one of the worst side effects...I used salt and bicarbanate of soda mouthwash four times a day right through chemo ( fec-t ) and never had any problems with mouth ulcers, definitely the most effective way of dealing with a sore mouth,
Hope the rest of your treatment goes a little better, any other questions or advice just ask there will be someone on here who will be able to answer any questions
Take care
Gill x
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hi Sylvia
Had my apptointment with my surgeon today and there going to remove the lump, never been so happy to be getting surgery but I know I'll feel a lot better when it's out, think it's going to be done in about 4 weeks just got to wait for a letter now
Great news adagio always a relief when an onc visit goes well, pity about your daughter having her arm in a sling for the wedding that's really bad timing but I'm sure it'll still be a great day
Take care
Gill
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Hi Clementine and Gill,
I was a salt and baking soda user myself and had mouth sores only twice and they were not bad, just small ulcers. I can't remember how many times a day but I was pretty consistent. I had EC and Taxol so maybe there is some difference with the severity of mouth sores, but salt and baking soda is worth a try.
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Hi, Sylvia
Thanks for good-chemo wishes. I had my last treatment today, so glad that's over.
Not sure yet about radiation. My oncologist did not think I needed it, but he wants me to consult with the radiation oncologist in 3 weeks to be sure. And since my oncologist is retiring, I have a new doc. I will meet with her in 2 months.
May I ask what part of your body did they radiate when you had it? The armpit or your incision scar? That's what I don't understand. If they removed all the cancer, and I've had all this chemo as a precaution, what's left to radiate? But then you had your radiation before chemo, right? So I guess that makes a difference.
I hope it's not still too hot for you in Exmouth, it's been very hot here in Missouri too.
Talk to you soon, Mary
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Clementine,
I had the Taxotere and used the salt/baking soda and found it very successful. I actually forgot to use it the second time for a while and quickly I got a largish white patch on the side of my tongue, very sore. I did not forget it again. I hope it will work for you, too.
Mary
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Adagio,
Good news on your doctor appt. and sounds like your daughter will need your help. So sorry about that, but I bet you will all make the best of it.
I had my last chemo today and will see my new oncologist in 2 months. I guess it is nerve-wracking to get close to those appts.
My previous oncologist (he retired today after I saw him), said he did not see a need for a PET scan now, I was just curious if you or any of the other ladies have them at times.
Talk to you soon, Mary
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maryna8 - what a relief to have chemo behind you - that is certainly worth celebrating - I well remember the last treatment and I was so glad to be finished! I have never had a scan or any blood tests for tumour markers - my oncologist said there is no need for them, and I am very happy not to have them. It is a weird feeling at first not having to go to as many appointments, but after a short while it is much appreciated. I just try to prevent recurrence by exercising every single day, eating a healthy diet (most of the time) - except for every now And then I have a desire for a nice cup of coffee and something sweet to eat with it - I indulge because I feel that life is too short to feel deprived . LOL Enjoy the next 2 months and take great care of yourself. Did you find that your hemoglobin dropped during your treatments - mind did, and it took a while for it to come back up, and when it did, I noticed an increase in my energy levels.
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Hello adagio
I was so glad to know that everything went well when you went for your check up. Congratulations.
I was sorry to read about your daughter and I do hope everything will go well for her wedding. What date is it exactly?
I was so glad to see that the post on this thread is going very smoothly and that you are all popping in to take care of Clementine and to give her good information. It looks as though we have a consensus about the usefulness and effectiveness of salt and bicarbonate of soda (baking soda for our American friends). I used it throughout chemotherapy and managed to steer clear of mouth problems. I still use bicarbonate of soda warm water rinses and alternate with warm salt water rinses to keep my mouth fresh and clean. I also use Arm and Hammer toothpaste that has bicarbonate of soda in it.
Through chemotherapy I also had Biotene products for the mouth, but these are quite expensive.
How is your summer going over there in Canada?
Fond thoughts.
Sylvia xxxx
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Hello Clementine
I am posting to give you a warm welcome to our very friendly and informative thread. None of us would choose to be here, but we are here and we are a very close, kind and compassionate group. You will find a lot of support here.
I was sorry to read that you have been having such a hard time with mouth ulcers. I know they are painful and make you feel very miserable and low. It is strange that I used to suffer from mouth ulcers quite a bit years ago, but they suddenly vanished and I did not suffer from them during chemotherapy. I can only add to what the other women have told you. Put your trust in bicarbonate of soda and/or salt.
You might like to add some more details about your treatment in your profile that we all put under our posts. Have you had surgery or are you having chemotherapy before surgery? Did you suffer any more side effects while going through FEC?
I hope that you will make good progress during the next three weeks so that you will feel strong to begin paclitaxel (Taxotere). A lot of the women going through chemotherapy with taxanes either paclitaxel (Taxol) or docetaxel (Taxotere) have problems with their feet and toes. Some ask to have ice on these to try to prevent neuropathy. A lot of the women say this worked for them. I did not have ice nine years ago and it was not mentioned and neuropathy of the feet is the only long lasting effect I have from my treatment. I have been told there is no cure for neuropathy. I have read on other threads that women have been told the ice is used to stop toe nails falling out. This can happen on the taxanes but sometimes they just become a bit discoloured.
Keep posting and keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hello Gill
It was great news to hear that the powers that be are going to remove that lump. It will give you peace of mind and that is very important. Try to keep busy while you are waiting for this to happen. We all know how much we have to wait going through all this.
How are you keeping otherwise? How is your nephew progressing and how is your niece?
It is very hot here in Exmouth and much too hot for me. We urgently need a storm and some rain and lower temperatures. The beach here is full of people roasting themselves. I do feel concerned about the children.
Fond thoughts.
Sylvia xxxx
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Hello Susan
I was glad to see you posting and passing on good information.
How is everything with you?
Fond thoughts.
Sylvia xxxx
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Hello Mary
You must be overjoyed to have had your last chemotherapy treatment. Congratulations and well done. You now need to build up your strength through good nutrition, some exercise and still plenty of rest.
It is a strange feeling when chemotherapy treatment comes to an end. It is a long journey, with ups and downs, periods of anxiety and a very tiring time.
I know you have a busy time in general because of your husband not being well and now with not having to go to the hospital for chemotherapy you may have a bit more relaxation.
Are you going to do anything to celebrate the end of chemotherapy?
Let us know what happens about your radiotherapy when you see the radiologist. Remember, we are all different and although treatment is basically the same, there will be variations and your oncologist will decide what is thought to be best for you as an individual. Of course, you must discuss all this and make your own decision.
I had a large tumour, as you know, and so had six months of chemotherapy to shrink the tumour to make surgery easier. I then had a mastectomy of the right breast and seven nodes removed, of which only the first node, the sentinel node, was positive. When I had healed I had three weeks of radiotherapy, with boosters, for five days every week. I was told the radiotherapy was there to mop up any stray cells. Remember that chemotherapy is systemic an works throughout the body, but radiotherapy and surgery are local. My radiotherapy was focussed over the area where I had had surgery and under the arm.
Before radiotherapy treatment starts you have an appointment during which you are placed on a prototype of the machine and the area to be radiated is mapped out with pinpoint marks. You are also told what to do and what not to do during treatment. When you have the actual radiotherapy you are placed on a flat bed and the radiotherapy machine is above you. The team is meticulous about placing you properly and putting your arm in the exact position. Lights are then turned off in the room, the team go out and the machine is switched on and moves above you but quite close. Before you know it the machine is switched off and the treatment for that day is over. I used to close my eyes and count the seconds. There is nothing to fear. I hope this helps.
By the way, I had radiotherapy last of all in my treatment and I think that is the usual procedure.
The women that I know either had the same procedure or had the surgery first of all. Other women I know with small tumours had lumpectomies and radiotherapy but no chemotherapy, but those that I know had hormonal breast cancer.
The weather has really got to me here. There is no sea breeze and the heat has made me feel a bit sick!!!
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
The weather here is humid but we have a few showers today ,thank goodness.
I didn't specify in my post that the study that I took part in for long term fatigue focused on men and women 2 years + after treatment. I am hoping that something will come of it if only that the medical profession will acknowledge that it can and does exist and isn't all psychological.
I am just home from my yearly mammo and now the wait begins. I was very nervous because the lymphadema nurse said that I was quite lumpy and I have had some pain recently. The radiographer told me not to worry even if I was called back for a scan as it could be the lymphadema.
I called over to the centre to kill some time before my appointment .I must say it reminded me how lucky I was and still am to have a place like that to go to.We were sat around chatting and looking around the table I felt so proud to be part of that group of women. They are all different ages ,different cancers but so supportive of each other and may I say it BRAVE. Strangely quite a few of us have our check ups around now.
Mary has organised a weekend seminar for younger women, we have just finished Ageing with Dignity and there are to be a series of sessions over 5 weeks on all things cancer.All of this is done on fund raising alone and the goodwill and expertise of members, volunteers and consultants.
I also met a bio energy practitioner who will providing a service too.
I hope that you get some relief from the weather this weekend
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Hi Mary,
Glad to hear the chemo is over.
I had 33 sessions of radiotherapy and I also was told that it is to mop up stray cells. The last 5 were booster ones where they targeted the exact spot where the cancer was. That is why they are so careful on the accuracy of the markings. it always seemed that it took me longer to dress and undress than the actual rads itself.
I had a lumpectomy
Hope that helps..
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Hi Gill,
good news that you are getting the fatty lump removed,whilst I am sure that more surgery may not have been what you reckoned with, it will be a relief to get rid of it.
Wishing you well
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Hi Adagio,
Brilliant news that your appt went well.
It must be disappointing for your daughter but she seems to have everything organised and I'm sure that she will look beautiful.
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Hello linali (Lindsay)
Thank you for your post. I do understand what you are saying about how important it is for the medical establishment to recognise that long term fatigue after breast cancer treatment (and indeed of cancer in general) is a reality and not something that exists just in the mind of a patient.
On the other hand I think it is important for patients not to focus too much on long term side effects so that they take over their lives. It is important to focus on the fact that they have survived a disease that kills and that side effects are a small price to pay for life. If there is still quality of life then that is good.
I do hope that all will be well when you get the results of your mammogram. We all know how awful waiting is. I know all hospitals work differently but at the hospital that I attend the mammogram results are given straight after the mammogram at the appointment. Rest assured, we are all thinking of you.
I can understand how proud you must be of the centre that you attend. I must say it all sounds very friendly and helpful. I can understand the benefits you derive from it and give to it. It is so important to be able to talk about things.
Your friend Mary is doing such an important job. I was interested to read that you had had a course on cancer for younger women. What useful tips came up about Ageing With Dignity.
The weather here has been intolerably hot and humid. We have not had a drop of rain for some time now and the beautiful green grass is going yellow. I know we all long for a bit of sunshine but this has been too much. Exmouth seafront has been so busy and the beach has been packed. I do not know how people bake in the sun for hours on end or why they want a tan!! The ice cream vendors must be making a fortune as there have been queues all along the seafront.
Can you explain exactly what a bio energy practitioner is?
Have you heard all the news about the new radiotherapy practice that NICE in England is making eligible on the NHS? Apparently radiotherapy will be given at the same time as surgery and so will not have to penetrate the skin. I am not quite sure whether it is just for those women having lumpectomies or whether it will also be those having mastectomies. It will take about twenty minutes and then that will be it. It will save all those weeks of radiotherapy. I think we need more information about it. For example, how much radiation will go in to the body and how safe is it, because under the old system you are not subjected to radiation for very long at each daily session. I saw a woman being interviewed on the television about it. I think she must have taken part in a trial and she said she was fine.
I hope you are having a good weekend and please let us know the results of your mammogram.
How is all the family?
Fond thoughts.
Sylvia xxxx
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Hello everyone
I hope you are all having a good weekend and that the coming week will be good to you all.
Thinking of you all.
Sylvia xxxx
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Hello All,
Sorry i have been absent these last few weeks but it has been a mental here! I would like to post a pic of Evie but I don't know how to do it on a MAC.
I had FEC number three on Friday and that has left me so tired, FEC number two caused horrible irritation to my vein and this has been a source of pain, however, the huge lump is decreasing in size so thats good news. I am obsessed with getting a complete pathological response (when the lump goes completely with chemo) as i have read that this leads to a better long term prognosis, so thats why I am always asking about taxotere. Sylvia, how many cycles of chemo did you have? Did your huge lump go completely? Clementine, I was wondering why they are changing to tax on chemo number 4? Is it because there is not a significant reduction in size?
Found out yesterday that child number three has chicken pox! So spent quite a long time in the badger clinic yesterday while they were working out what to do with me! Anyway, big sister has taken him for the weekend for 'quarantine' and I will talk to my own onco tomorrow to discuss options. Nightmare! This also has implications for baby as she is theoretically only one week old. I could go and spend a week with my sister in London and take baby, but this week I just want my own bed.
Gill, I was so pleased to read that your lump wasn't a nasty lump.
Sylvia, I have been reading lots about apricot kernels and mine will be delivered tomorrow, I have also ordered a book, 'A world without cancer' that talks a lot about vitamin B17 and how that it has been virtually eliminated from the western diet, B17 is a vitamin that switches off cancer growth, so a preventative measure, but also shrinks tumour size. I will speak more about this when I learn more. I am telling you all now, because we will try ANYTHING and it is safe to take.
Jacqueline, your Church looks amazing and I look forward to seeing it develop. If anyone knows how to add a photo on here when using a MAC, please let me know.
Chilling on the sofa today, watching films, recovering from Friday! Happy Sunday everyone!
Marymargaret
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Gill, as you will be having this fat lump removed, it may be of interest to you to ask for tramadol to knock you out instead of morphine, I have read some studies that show that morphine can cause cancer cells to grow. It's something that I will be asking for when I have the surgery.
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Hello Marymargaret
Thank you for your post. I was sorry to read that you have been having such a difficult time and I do hope everything will improve.
I am sure we would all love to see a photograph of baby Evie, but I am afraid I cannot help you with how to post a photograph from a MAC computer. I do hope someone will post in with instructions. I am very much a novice with computers and just know the basics, but my husband, Raymond, is knowledgeable and he has told me that if you can put the photograph onto your MAC computer, then the procedure to post here is the same procedure as from Windows. You simple go to the icon for posting pictures which is the eighth icon from the left of the posting box, and you then click on it and follow the instructions. I hope this helps.
I do hope things will improve with the chemotherapy treatment. Do not worry yourself about whether the lump disappears completely. The reason for having chemotherapy before surgery when you have a large tumour is to shrink it a bit so that it makes surgery easier. My large tumour shrank about a third after my six months of treatment. I do remember that the tumour was measured with a ruler each time that I went to see the oncologist just before going over to the chemotherapy ward. Nobody ever mentioned complete pathological response until I had had the chemotherapy and the mastectomy and in fact what the oncologist and breast cancer surgeon said, with a big smile, that all was fine and that there was no visible evidence of disease. I have seen this commonly abbreviated to NED. It was in June, probably mid June, in 2005, that I started the radiotherapy which went on five days a week for three weeks and I was told this was to mop up any stray cells. I was told the radiotherapy would be with booster doses and that these would be added on at the regular sessions and not as a separate thing.
I am living proof that you can have a good prognosis without the tumour completely disappearing if you have chemo before surgery (neo-adjuvant chemotherapy). We all react differently to chemotherapy treatment but I was told that the side effects, especially fatigue, tend to build up as the treatment goes on. I was also told that trouble with finding veins if you are having just an ordinary cannula as I had. I did not have too much trouble but the district nurse coming in to take blood prior to chemo did have a bit of trouble before my last chemotherapy session.
You need to ask your oncologist about docetaxel (Taxotere). The combination that is used is chosen by the oncologist depending on what she thinks is best for each individual patient.
Thinking of you.
Sylvia xxxx
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Hello Marymargaret again
I decided to start a new post just in case I lost the other one.
You asked about my chemotherapy treatment. I had six months of chemotherapy, every three weeks. I started in mid November of 2005 and ended at the end of April in 2006. I had four sessions of EC (epirubicin and cyclophosphamide) and then four sessions of docetaxel (Taxotere). I asked my oncologist why I was having Taxotere instead of the other taxane, paclitaxel (Taxol) and she said because it was not so harsh on the heart.
If you think you could benefit more by having the Taxotere added now, there is no harm in asking your oncologist if she thinks this would be beneficial.
In the book that I keep as useful reference, Understanding Breast Cancer by Prof. Mike Dixon, published in association with the British Medical Association (BMA), on page 152 under the chapter Drug Treatment (Systemic Therapy), there is a list of all the commonly used regimens for chemotherapy. One of them is TAC. This stands for a taxane drug (it could be Taxotere or Taxol) with doxorubicin (Adriamycin) and cyclophosphamide. Doxorubicin belongs to the same group of chemotherapy drugs as epirubicin.
It gets a bit confusing because with the abbreviations they sometimes use the initial of the brand name and sometimes the initial of the generic name. I think this is probably done depending on how easy it makes the abbreviation easier to pronounce and thus remember.
Let me know how you get on if you think want to change your regimen and go straight to Taxotere.
How unfortunate that your child number three has contracted chicken pox. How old is that child? You definitely do not want to be near anyone with an infection as your immune system is depressed from the chemotherapy treatment and you are very susceptible to picking it up. Your sister has done the right thing to take care of that child. Did you have chicken pox as a child? In fact, did your sister have chicken pox as a child? My understanding is that chicken pox can be nasty in an adult. It is something I did not have as a child.
When I started my breast cancer treatment I was told to get a flu injection and the once in a lifetime pneumonia injection because of the susceptibility to picking things up. I was also told to stay away from crowded places such as supermarkets and public transport. I avoided going to my surgery for my pre-chemo blood tests, to avoid germs and infection and had the district nurse come to my home.
With you, it is quite difficult with four children, especially such a young baby, whose immune system will not be strong. Do you have four young children? How are you coping? Do you have any help?
Try to rest as much as you can and sort out a situation that will help you and baby Evie without upsetting the other children. It must be difficult for them.
I was most interested to know that you are taking bitter apricot kernels. As you probably know from reading this thread, I have been taking them regularly since the summer of 2005 and I do not think I shall ever stop. Green tea and bitter apricot kernels have been my constant friend and companion for over nine years. In the morning I have Clipper pure green leaf tea and I love the strong bitter taste. Because there is some caffeine in green tea I have Clipper decaffeinated green teabags for the rest of the day and I often take some bitter apricot kernels with the tea.
I shall be most interested to know about any information that you get from the book A World Without Cancer. I know there has been a lot of controversy over the years about B17, laetrile, but I tend to make up my own mind about things and do not take much notice of scaremongering. I was amazed at all the products that have come on the market since bitter apricot kernels became available. If you Google bitter apricot kernels you will be surprised. I started taking them before I started my breast cancer treatment and took them all the way through it. They were on the list of nutritional benefits when diagnosed with breast cancer that I was given when I had a private consultation with a reputable nutritionist in Bristol. I have read that they kill cancer cells. Who knows if they do or not?
I can see from your posts that you are determined to be informed about everything and that is good. I do think the book Understanding Breast Cancer that I mentioned is very useful to have and you could consult the chapters as you go through each stage of your treatment. You will be very interested in Surgery for Breast Cancer, Radiotherapy Treatment for Breast Cancer, Drug Treatment, Systemic Therapy and this includes chemotherapy, New Developments and Clinical Trials, Reconstruction and many other headings. The other book that I use as reference is Beat Cancer - The 10 Step Plan to Help you Overcome and Prevent Cancer.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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