Calling all triple negative breast cancer patients in the UK
Comments
-
hi Sylvia and all, thank you for always remembering me, Sylvia, I appreciate it so much.
Apandy, I sat in my chair most of the time during rads. It's a 2 hour journey to my oncology centre, each way, so it was back & forth for 5 weeks. I read that rads alone cause fatigue, & don't forget this comes after chemo, so I think it's a combination. I started working half days after rads & managed fine. It will get better, but as Sylvia says, it can take a long time, so go easy on yourself, your body has taken a beating.
Am on my 6th cycle of Xeloda, will have a scan of abdomen, liver & chest at the end of the month. The side effects are there, mainly mouth sores, nausea, hand foot syndrome & our old friend, fatigue; but they are manageable & I continue with yoga and walks. The water is getting cold to swim, sadly.
In May it'll be 2 years since my dx, and am 13 months as stage IV, and all considered, I think I'm doing well. This is certainly not what I thought it would be. Although it seems, at times that I've been on & will be on chemo for ever, but I try not to stay there. My qol is not bad & I really feel blessed to be this well.
I also lost 3 friends in February - 2 to bc & one not cancer. I get so sad, for the families, sad for me, for wonderful women going so young, sad for my family; I have a huge well of sadness deep inside me. Most of the time I'm pretty upbeat, but I have to honor the sadness, anger, fear & all the emotions as they come up.
I have SAD, Sylvia, since a little girl. They say to keep your living areas light - I think they say that fluorescent lights are good. I just think I'm part bear - I just want to hibernate in winter.
It's so sad when young people commit suicide, I do think there's more stress generally now, and I'm pleased I grew up in simpler, safer times.
My son will be here from Israel on Saturday!!! I'm getting so excited to see him. He'll spend 2 weeks here in Plett with me, then we fly up to family in Jhb for a few days. So he will be with me for the scan & my appointment with my onc the next day, which is comforting.
We definitely want to go paragliding this time, am hoping the weather will cooperate.
I read this thread and am working through the links and all the info, even though I don't post often. Thank you all, especially you, Sylvia for keeping it so interesting!
0 -
hi Sylvia
Thanks for the good wishes for my ECG on Thursday, I'll have a weeks wait for results but you do get used to waiting for results don't you....hopefully it will be fine....
I was interested to read about the breath test for breast cancer I wonder how that works? Did it say whether this technique was going to be available in the uk soon?
It's funny you should mention "an idiot abroad" this is one of my all time favourite programmes and I have watched them all and have the box set as well....there aren't many programmes on TV that make me laugh out loud but this is one of them also "top gear" is another programme I love,
The imaging method to seek out dormant cancer cells would be a massive step forward in cancer treatment wouldn't it....did it say when this would be available and what could be done if any dormant cells were detected? Can they be treated whilst they are still dormant, if they can I imagine it could be mean a massive drop in cases of recurrence....
Oh meant to say I got my aliminium free bicarbonate of soda from amazon it was £6.95 for 500g
Speak soon
Gill
0 -
Hi, Sylvia!
I am amazed at the breadth of your knowledge, you seem to know a lot about all aspects of this disease.
I am an American newbie, just diagnosed on Feb. 3, 2014. I found a lump in late January, and was instantly alarmed because I had just had a physical exam in December, and the lump wasn't there. I am a 61 year-old Caucasian woman, no children, pretty good health other than this. I am thin, have low blood-pressure, and don't smoke. I eat a lot of fruit, I grow a vegetable garden and can some of the food I eat. I do have a sweet tooth, and like an occasional glass of wine. I do eat a lot of carbs, I have seen a theory saying cancer feeds on sugar?? Like you and all of us, I wonder and wonder what kicks this disease into gear. I have had a mastectomy of my right breast, had 3 lymph nodes removed, 2 of them had microscopic amounts of bad stuff. I will start chemo next Tuesday, March 18th. I am Stage II, Grade 3.
I have been overwhelmed when online by all the data saying "this is good for fighting cancer, stop taking this if you have cancer, eat this to battle cancer". I don't know how to figure out fact from fiction at this point, I feel like I should be doing more to fight this disease, but how do you begin to know what is good for you? I have heard that many docs don't want a patient to be taking a lot of supplements while on chemo. I am worried about losing too much weight, I am already thin and get nauseous pretty easily. They have told me they have excellent anti-nausea drugs now. I am going to try to find some good non-dairy diet supplement drinks; anything for calories at this point.
Anyway, need to close for now, wanted you to know there is another one out here who is reading your posts and learning a lot!
Thanks, Mary
0 -
Hello Carolben, Jackpot
(Gill) and maryna8 (Mary)Thank you for your most
interesting posts and I shall be posting later today.Fond thoughts.
Sylvia xxxx
0 -
Hi TNBC ladies! I've logged on quickly and have very intermittent WIFI on vacation.
Carolben I'm in Africa with you (well sort of) so I'm pointing myself in your direction and blasting away at your mets. And I pray every day for everyone.
The Seychelles vacation is a good way to cap off a bad year of BC treatment. The weather is not great but I love warm weather and everything is so lush and beautiful. Attaching a picture.
This vacation is a bit of a luxury I know, but I do recommend doing something to celebrate the milestones if even in a small way.
We have 2 more islands to go and hoping for a bit more sunshine. I do still have that pallor from a year of cancer......
0 -
Hello Carolben
It was so nice to hear
from you and to know that things are not too bad with you. I agree
with the good advice that you have given apandy (Anne). We all have
to realise the huge toll that cancer treatment takes on our body and
we are not going to be back to normal straight after the treatment
finishes. Chemotherapy for six months really takes it out of us and I
think it can take years to recover from it and during which time our
energy can just disappear and waves of fatigue flow over us. Some of
the side effects never go away, such as peripheral neuropathy in the
feet and/or hands.Although radiotherapy
does not seem as harsh as chemotherapy it is just as toxic and adds
to all the harm we have suffered from chemotherapy. We must not
forget surgery, which is also debilitating and a trauma to our body,
not forgetting the side effects of anaesthetics. A cancer journey is
a long one and recovery is even longer. We have to learn to pace
ourselves.Thank you for updating
us about your Xeloda treatment.I do hope you will have
good news when you have a scan of the abdomen, liver and chest at the
end of the month. I am sure we all recognise those side effects and
how wearing they can be. Are you doing anything different this time
to deal with the side effects?The time has gone
quickly since your diagnosis two years ago in May, but it probably
does not seem like that to you. I certainly agree with you that you
are doing well, all things considered and these past thirteen months
at stage 4 must have been really difficult. I am so glad for you that
you consider your quality of life not too bad.I am sure we can all
understand the different emotions that you go through, but I am glad
to know that most of the time you are pretty upbeat. I do understand
those other emotions of sadness, anger and fear.I was interested to
know that you have SAD. I know people here who are affected by this
and I do not know how they cope in this sunless country of ours. I
know a few people who have bought a special lamp that they switch on
during the day or night and they say it lifts their spirits. I have
certainly been fed up with the weather here for the past six months.
I am trying to push March out of the way and get into April and am
hoping for six better months.It is a very difficult
world that we live in and a very stressful one. I do not like the
England of today as much as the one of the fifties. There is such a
lack of courtesy and consideration for others.I hope you have a good
time with your son and that you will have a good family get together.
It will be nice for you to have your son with you when you go for
your scans and appointment.Thank you for your kind
words about the thread.Take care and remember
we are all thinking of you and sending you our support.Fond thoughts.
Sylvia xxxx
0 -
Hello Jackpot (Gill)
I do hope you will get
good results from your ECG in a weeks time. You are indeed right
about waiting. That is the name of the game with the cancer journey.I do not think the
availability in the UK was mentioned. Unfortunately we are always
behind with these things. NICE is always going on about
cost-effectiveness but often I think they are short sighted and
cost-cutting turns out to be more expensive in the long run. It would
be such progress if unneeded mammograms could be avoided, because
none of us really knows what radiation from these mammograms is doing
to us.I have no idea how this
breath test works, but I would think it must be something to do with
smell coming from the breath. After all, there is theory dogs appear
to be able to sniff out cancer.I agree that the
imaging method to seek out dormant cancer cells would be a massive
step forward in cancer treatment, but of course it is not stated when
it will be available. I would think that if dormant cells could be
detected they could somehow zap them. It seems as though primary
breast cancer can be brought into remission but that any kind of
recurrence is more challenging. We just have to keep our fingers
crossed and try in our small way to push things along. I feel it is
always worth mentioning these things to our oncologists and ask what
is going on. We have to bring these things out into the open. It is
not that long ago that ice caps were offered. I mentioned it to my
oncologist in 2005 but she was dead against them. It is up to the
patients to bring up these matters.I was interested to
know that An Idiot Abroad is one of your favourite programmes. I am
so glad I have discovered this man, Karl Pilkington. I have marked
some off to watch in the coming days. I did not realise that Top Gear
was a funny programme.Thank you for the
information about aluminium free bicarbonate of soda.Fond thoughts.
Sylvia xxxx
0 -
Hello maryna8 (Mary)
Thank you for your
post. I was sorry to hear that you were diagnosed with breast cancer
very recently on February 3rd 2014. I know that a
diagnosis of breast cancer can come as a shock and you probably have
all sorts of thoughts going through your mind. Just remember that you
can get through this, like the rest of us, and that it is best to
take one thing at a time.You have not written
out any details beneath your post and it would be very helpful if you
could do this. What kind of breast cancer have you been diagnosed
with? The most common is invasive ductal carcinoma (IDC), but there
are other kinds. I am assuming that you have triple negative receptor
status, that is oestrogen negative, progesterone negative and HER2
negative. I have noted that you are stage 2 and grade 3. Most breast
cancer with triple negative receptors is grade 3.From what you have said
in your post, you have been leading a pretty healthy lifestyle and
doing all the right things, but with breast cancer there do not seem
to be any guarantees. Like you, I was very healthy, never been ill,
was tall and slim, and on a healthy diet, but nevertheless I got
breast cancer at a similar age to you. I do share with you one of the
supposed or quoted risk factors in that I have had no children.There is no one cause
of breast cancer. It is multi-causal and we are told there are multi
risk factors. However, having the risk factors does not necessarily
mean they caused your cancer. Recently there has been a lot of
publicity in general about sugar being very bad for us and there is
no doubt eating too much of it is causing weight problems and sugar
gives us empty calories. There is more and more research about cancer
cells taking up sugar in our bodies, but that does not mean that the
sugar has literally caused our cancer. However, I think keeping sugar
to a minimum in our bodies can only be good. As far as carbohydrates
go, we should eat them in moderation and only as part of a balanced
diet. These carbohydrates should be complex ones. Stay clear of white
bread, white rice, white pasta and anything that is processed.I would not worry
yourself with what caused your cancer. None of us may ever know the
answer to this. We have to get over the shock of diagnosis, inform
ourselves about our treatment and then go through that treatment,
coping with each stage as it comes.I see that you have
already had a mastectomy of the right breast, and again I share that
in common with you. I had just one lymph node, the sentinel node,
positive out of the seven that were removed to be checked.I hope you have
recovered well from the mastectomy and feel ready to start
chemotherapy on Tuesday March 18th. Can you tell us which
chemotherapy drugs you are going to have and put them under your
details. Chemotherapy drugs are often used in combinations as each
one attacks the cancer cells in a different way. In the States, from
what I can see on the threads, they often use doxorubicin
(Adriamycin), cyclophosphomide (Cytoxan) for so many cycles and then
a taxane drug, in the States often paclitaxel (Taxol).I am assuming that your
oncologist has already sorted out the combination thought best for
you. Do not be afraid to ask which drugs have been chosen and why and
possible side effects. Just work with your oncologist.Try not to worry too
much about side effects, as there are always things you can take to
help with these. You will be given anti-nausea and anti-sickness
drugs with your chemotherapy and some to take for a few days after
each treatment.I would stay off the
internet while you are going through treatment, so as not to be taken
in by companies making money by telling you what to take to fight
cancer. Just concentrate on the chemotherapy and drinking plenty of
water while going through it, get plenty of rest and keep looking
ahead. Try to eat small servings of food each day rather than big
meals, and get plenty of fruit and vegetables and some good quality
protein.We shall be thinking of
you on March 18th and sending our comfort your way. If
there is anything else you would like to know in the days leading up
to that date, please do not hesitate to post. Let us know how you get
on.Be strong, be positive.
You can do this.Fond thoughts.
Sylvia xxxx
0 -
Hello susaninicking
(Susan)I am just popping in to
say thank you for the beautiful photographs. That fruit looks
delicious!I am glad to know that
you are having such a good holiday after finishing your breast cancer
journey. Do not forget to pop in to see us and to help others.Fond thoughts.
Sylvia xxxx
0 -
Sylvia, I think I have my info underneath my message, we will see!
Thank you so much for your advice on getting through the treatment. I like it because it is very common sense. You have a very calm manner too that is quite soothing.
I am almost positive my treatment will consist of the 3 drugs you mentioned. The oncologist told me, but I didn't make note of it, and I was in somewhat of a fog at the time. Everything seemed to happen very fast concerning my cancer, which was good, as far as I'm concerned. My husband has serious chronic conditions and he has been very ill at the same time all my drama was going on, so it has been very chaotic and unpleasant. Anyway, on Friday of this week I am supposed to attend a Chemo Education class at the facility where I will be treated. I'm sure I will learn all pertinent information then. I had to have an echocardiogram to check my heart, and I understand that was because of the "A" drug. In case I did not get my info correct on my message, I do have IDC and I am triple negative. The only relative I had with breast cancer was one of 9 or 10 aunts on my father's side.
I will post again Friday after the class when I am sure of the drugs I will be getting.
Thank you!
Mary
0 -
Hi Maryna8, sorry you have become a member of the cub no one wants to belong to - but this is a good place to be and I've gotten so much information, inspiration and help here, I hope you do the same.
Sylvia has given you lots of good info - I just want to put my word in regarding the eating. I also felt bombarded by all the advice and opinions of what and how to eat. I'm also thin - I didn't loose that much from the time of my dx - about 6kg (just over 13lbs), but I was thin to start with. And my appetite is not great at the best of times. So for me, especially during the AC chemo, it was just about getting whatever I could into my stomach. Baked potato and a light chicken broth were 2 things I could face. Oh & dry crackers! Like you, I have a sweet tooth (which has almost gone since chemo) but have always eaten healthy food and not junk. I have cut out sugar in my drinks and have also heard that cancer likes sugar. I have changed to full cream milk and double cream yoghurt for the extra calories too.
Basically what I'm saying is that for me it was more important to just keep getting food into me (any kind of food) - even a bite at a time! I drink Ensure, a meal supplement, and add a protein powder to some things. But I'm not a health food fanatic, and if I want ice cream I'll eat it. And some days I just want juice and fruit. At rare times my body has shouted for red meat, then I have red meat.
It was so scary starting chemo for the first time - I went home after the infusion and kind of just waited to see what would happen, with great dread! The first one was the easiest, but it is cumulative. The anti nausea drugs are good - I took Emend, horribly expensive but very effective. I'm sure once you've spoken to your onc you'll have more info, they should tell you what to expect.
Be of stout heart, Maryna8, you can do this - you have a lot of support right here, we understand cos we've been there, and I'm hoping you'll cope well with the treatment and it'll do the job and get totally rid of the cancer! big hugs
0 -
Hello Mary
Thank you for your
post. I was glad that I could be of help. Yes, a lot of it is common
sense. I am glad to know that you found my manner calm and soothing.
I do think it is a good idea to go through cancer treatment in as
quiet and calm a manner as you can, because worrying is no good,
causes stress, which increases the stress hormone cortisol in your
body and you do not want this. Try to be as relaxed as you can and
seek out things to make you laugh.I can understand that
you have a lot going through your mind at the moment, but as soon as
you start your chemotherapy you will get into a routine for probably
six months. Concentrate on that. We shall all be very interested to
know how you get on at the chemotherapy education class on Friday. It
will be a good idea to attend. It is also a good idea to take someone
with you so that you have two pairs of ears listening, because it is
easy to miss things that are being said to you. I found it a good
idea to have pen and paper to jot things down as well, or have
someone to jot them down for you. This chemotherapy education class
sounds as though it will be like the pre-chemo appointment that I had
a few days before starting the actual chemotherapy. I remember being
asked questions about my general health, having my blood pressure
taken, but do not remember much information about chemotherapy drugs
and their side effects. This came out more once I had started the
chemotherapy. We have to bear in mind that we are in two different
countries and I think in general you get more information in the
States. Remember that you may not necessarily get the side effects.
You might want to ask about whether you will have injections after
each chemotherapy session to deal with low white blood cells that can
occur during chemotherapy. The brand names of the drugs are Neupogen
and Neulasta. Here in the UK I had to have a blood test the day
before each chemotherapy session to make sure everything was normal.
I had a district nurse come in to take the blood test, which was then
sent away to my hospital and the results were there when I arrived
for my appointment. I did not have any problems with low white blood
cells or red blood cells for that matter. I used to take iron
supplements to keep the red blood cells up to par, along with plenty
of iron-rich food, such as prunes and dried figs. You should check
with your oncologist about supplements, as many of them are against.You will probably be
told what kind of cycle you will have for your chemotherapy. I had
chemotherapy every three weeks, but since then some have had every
two weeks or even every week, and some say they found this easier
than every three weeks. You tend to feel the most fatigued in the
first week and then you begin to pick up and start to feel more
normal as the next session looms.By the way, the dose of
the chemotherapy drugs is based on your weight and height. I remember
being asked for these details before I started chemotherapy and was
told that was how the dose was measured.I was sorry to learn
that your husband has some serious chronic conditions and has been
very ill while all this was happening for you. I can certainly
understand why things have been very chaotic and unpleasant. I do
hope your husband is feeling better now. Remember that it is very
hard on him as well. He will be afraid and concerned for you, but
somehow he will find the strength to help you through this. I do hope
you have some good friends and family members to help you through
this. I am sure you must have some support systems in the States that
can help you. Here in the UK we can get help from lots of cancer
charities. I opted to have visits from the Hospiscare nurses during
my cancer journey and they were very helpful, supportive and good
company. My husband was my rock throughout my treatment and also as a
carer went to Hospiscare meetings to be with other carers and have
talks. Never hesitate to get all help that is available.Carolben has given you
a lot of good information and support.As far as food goes,
she is right. You have to eat whatever you fancy through treatment to
try to keep your strength up. Baked/jacket potatoes would be good, I
think. I know I used to enjoy a lot of mashed potatoes with soya
spread and fresh soy milk. I do not touch dairy products. I also ate
lots of fruit and veg. I also found hard boiled eggs very useful.You might be interested
in a list of foods that I found in the Health section of one of our
newspapers. They were listed as brain boosting foods to improve your
concentration, but a lot of them figure in healthy eating lists. They
are as follows. Oily fish, pumpkin seeds, tomatoes (especially cooked
ones), spinach, blueberries, green tea, walnuts, chickpeas, goji
berries and eggs.I shall post more
details about each food a bit later, but this article was by
Nutritionist Lovisa Nilsson. She is the in-house nutritionist at
Lifesum (lifesum.com).I do eat all of the
things listed in that article and have done for some time.I hope this helps. Let
us know how you get on on Friday.Whereabouts are you in
the States?Fond thoughts.
Sylvia xxxx
0 -
Hello Michael
I was just wondering how everything went yesterday on March 12th. I hope you managed to celebrate Janette's birthday as she would have wanted you all to think about her on her special day.
I was also trying to remember whether you are still going through treatment for your NHL or whether you have finished.
Please keep in touch and let us know how you are.
Best wishes.
Sylvia
0 -
Hi Sylvia
We had a nice evening on the 12th March although the layout of the table made conversation difficult at times.
I had people over from England last weekend and I was busy entertaining them and I have people coming on the 23rd, the dog loves it ☺
I saw a story somewhere this week that criticised hospitals for not giving patients who had finished treatment for breast cancer any advice about ongoing care.That was certainly true in Janette's case and I must say that it is not something that I had given a lot of thought, but I think it is really important.
I hope you are well, shall do some catch up reading on the group.
Michael
0 -
Hi, Sylvia And CarolBen
I attended my Chemo Ed class and you were right. I will be getting Cytoxan, Adriamycin, and Taxotere. I was there an hour and 45 minutes. Watched a video about all the possible side effects of chemo generally, and then the nurse talked to me the rest of the time. About my chemo meds in particular, all of the possible side effects (EEK!) and the meds I have to take in conjunction with chemo. I had lots of questions and most of them were answered. A few questions she said I should wait and ask the oncologist, I will see him Tuesday before my first session. Very informational, and I don't mind saying, scary. But you all have been there and done that. So I guess I can too, that's how I have to think.
Interesting note, she told me that breast cancer patients often gain weight, perhaps the steroids and hormones. But only 3 days of steroids per 3-week session and the hormone is for increasing RBC I believe. She also said as a rule, the docs prefer no vitamins or herbal mixtures during chemo. But I should ask my doctor. I will also get a shot of generic Neulasta the day after treatment. Learned about the possible side effects of that too. Meals will be a challenge for my husband and I; he is on low-sodium and renal, which means low-protein, low phosphorus foods. I am supposed to get a healthy amount of protein, he is limited to 5 ounces of protein a day. We should both eat fresh fruits and vegetables, but there are some he shouldn't have, and it sounds like acidic fruits won't be for the best for me either. I have a long list I have to look over before I choose something for him.
The nurse gave me the results of my echocardiogram; 71%. That doesn't sound very good to me, but she said it just had to be above 50% to get the adriamycin. All in all, it was very informational, even if rather overwhelming. A lot of the side effects were things I have seen people post here so there weren't too many that were a surprise. it was just a lot all at once.
Thank you so much for responding, it feels like hugs coming from all over the world!
I am in the middle of USA America, Missouri.
Talk to you soon, Mary
0 -
Hello Michael
I was glad to know that
you had a nice evening on March 12th even if the layout of
the table made the conversation difficult at times. At least you all
got together to remember Janette.I was glad to know that
you are having a social life and have been busy entertaining. I am
sure your dog is very excited with it all.I have also read about
the lack of care that hospitals give to patients who have finished
treatment. The thought seems to be that you have had the surgery,
chemotherapy and radiotherapy, all seems to be OK and now get on with
it. All you get after that is the three-monthly quick physical check
up which soon goes to six months and then a year. You have regular
mammograms. There is no psychological support or support for long
lasting physical side effects. I think that, unless you have been
through it yourself, a person has no idea the toll that cancer takes
on a patient. The thing about cancer is that it is really there to
worry you for the rest of your life, because you know that it can
come back at any time.Of course, there are
cancer charities and support groups but it is not the same as
receiving care and support from your medical team. I agree with you
that long term support is extremely important. I do not think in the
UK that we are on a par with other countries when it comes to breast
cancer treatment and cancer in general. We always seem to lag behind.As you catch up on the
posts, I would be very interested in your thoughts and opinions on a
couple of things that I have read recently. One of these is about
using a breath test to diagnose breast cancer. Apparently this is
already in use in some countries. A person has the test and only if
they test positive will they then have to have mammograms to confirm
it. If this works it would save a lot of patients from unnecessary
radiation. Have you heard about this?The other information
was about a means of testing for dormant cancer cells and allowing
them to be targeted before they become active. This would prevent
metastases.All is well here in
Exmouth. The sun is shining today, the sea front is packed and the
Sandy Bay holiday camp has opened for the season. I have never known
it open so early.Keep well.
Best wishes.
Sylvia.
0 -
Hello Mary
I was very interested
in what you had to say about your Chemo Ed class, especially that you
were getting the taxane Taxotere rather than Taxol, which seems to be
more usual in the US. My oncologist told me that Taxotere is less
harmful on the heart than Taxol, so that is probably why they decided
on that for you.You certainly had a
good long appointment with the nurse. How long did the video last?
Were you shown how the drugs are administered intravenously through a
drip or pump as you sit in a comfortable armchair? Here in the UK it
is done in a large ward with the armchairs etc. set up throughout the
ward. I found this a bit of a shock when I first started because I
felt I had crossed over from the world of the healthy to world of the
ill. I soon got used to it all.Try not to worry too
much about the side effects, as I think being told about them and
worrying about them can psychologically bring them on! I had no
nausea, no sickness, just the inevitable hair loss after the first
treatment and then fatigue. By the way, because I had a large tumour,
I had the chemotherapy first to shrink it and then had surgery.Do not worry too much
about the medication you have to take in conjunction with
chemotherapy. At the actual session for the chemotherapy drug you
also have a saline drip and the anti-nausea medication and a few
tablets to take home for the first few days. Try not to be too
afraid. Once you start your chemotherapy you will be fine.Make sure you ask your
oncologist any outstanding questions you have about your treatment
when you see him on Tuesday. We have all been through this treatment
and you will get through it.I picked up in your
post about the nurse having told you that breast cancer patients
often gain weight. I know that steroids can make you put on weight
but I would have thought that only long term use of them would do
this. I have a female cousin who has COPD and has been taking
steroids long term and decided to come off them. She has told me she
has never felt better since doing this. My weight did not budge at
all during chemotherapy. It stayed the same as the day I started
treatment and it is still the same. I was puzzled by what you said
about hormones. What did she mean by this? What hormone is it that
you will be given to increase red blood cells and for how long will
you have it? I did not have a problem with either low red blood cells
or low white blood cells but I know that some women do.Neulasta and Neupogen
now seem to be standard treatment the day after chemotherapy to keep
the white blood cells up. I have heard some women say they had no
problem with them but others had pain.I understand how meals
will be a challenge for you and your husband, but I am sure you will
manage. The secret while going chemotherapy is to eat very small
meals often to keep your strength up and because you will not have a
huge appetite. I found that I liked to eat poached fish with mashed
potatoes during chemotherapy and ate lots of fruit and vegetables.
Pineapple, especially canned in its own juice, is very refreshing and
was recommended to me by the Hospiscare nurse because you can get a
very dry, sore mouth. You will probably not want acidic fruits like
oranges, but grapes will probably be nice. Hard boiled eggs were a
good standby for me as well. I also had plenty of fresh soy milk and
fresh soy yoghurt.Let us know how you get
on with your nutrition.I am sure that you will
have good care, but never be afraid to speak up and speak your mind
if you are not satisfied and never be afraid to ask questions.It does all seem
overwhelming at first, but once you have had that first appointment
you will get into a routine. Chemotherapy is the longest part of the
treatment and the most challenging but you will get through it.Sending fond thoughts
you way and hoping that all will be fine on March 18th.Sylvia xxxx
0 -
Hello everyone,
I am just popping in to say that I hope you all had a good weekend and that you will have a good week. I am assuming that Anne and Sandra have now finished radiotherapy and that you are feeling relieved. Please post and let us know your feelings about having finished your cancer treatment.
Remember that maryna8 starts chemotherapy on March 18th and needs your support.
Thinking of you all,
Sylvia.
0 -
Hi Everyone,
Have not been on here for 3 weeks and have not read the last 3 weeks messages and cannot bring myself to read them or any other sites I am on to do with cancer.
Liz has had a cough for the last 6 weeks but was checked by a doctor on Friday and does not have a chest infection.
She also has pains in her ribs, achy joints and gets breathless and tired.
She is having a ultrasound in the next couple of weeks as she may have gaul stones.
We are also going to have x rays today at the Norwich hospital at the walk in x ray centre.
I know what's coming next as I have read it so many times and feel like my life and more importantly my sons life has come to an end.
Liz is still in denial that it is cancer.
Once we know what we are dealing with I will post more but want to get her the best treatment possible so any advice would be appreciated.
Liz only had FEC and radiotherapy first time around.
Peter
0 -
Hello Peter
I have just opened up
the computer this morning and found your post. It was strange that I
should find it this morning because last night I was thinking about
you and Liz and wondering how you were and how your friends were. I
can understand that you have not been reading anything on cancer
threads for three weeks. I think the threads probably get too much
for everyone and they need breaks. I fully understand all those who
move on and try to have a normal life once they have finished
treatment.I was sorry to read
that Liz has had a cough for the last six weeks and having been
checked by a doctor he has said that she does not have a chest
infection.I can understand your
concern but try to be optimistic about everything while you are
waiting to find out what is wrong.Let us know how you get
on at the walk in x-ray centre at the Norwich hospital today. The
ultrasound should confirm whether she has gallstones or not. Take
things one step at a time and do not automatically think that it is
cancer. If it turns out to be just remember that there will be
treatment and do not assume the worst.Please keep us informed
about what happens and know that we are here for you.I did notice that Liz
did not have a taxane drug first time around (docetaxel (Taxotere) or
paclitaxel (Taxol)) so that could be a possible treatment.Take care and know we
are thinking of you.Sylvia
0 -
Peter - so sorry to hear about Liz not feeling well, but like Sylvia said - try not to jump to conclusions too soon. Having said that I am very aware at how the mind works because I also have painful ribs and my mind goes to very dark places - however, I did have a nasty fall and landed on my rib cage, so I am hoping that is what the cause of my pain is - nevertheless, the mind is a wicked thing which makes us think the worst. So glad that you are going to get x-rays done and an ultrasound, then it will become clearer what the course of action should be. Thinking of you all!
0 -
Maryna8 - thinking of you tomorrow while you are having your first chemo - I still remember mine vividly - the first one is the hardest since it is all so new, but you will find the chemo nurses are very nice and will help put you at ease. Take the meds you are given and you should be just fine - will be in your pocket! Let us know how you get on.
0 -
Hi, Sylvia.
Interesting about the Taxotere being easier on the heart, they told me the Adriamycin is hard on the heart, but not that. It was a long visit for the chemo class, the nurse took me into the big room with lots of windows and reclining chairs. The video was about a half-hour, she won me over because she brought me a warm toasty blanket. Love those. Then she sat and went over all the drugs I will be getting, the possible side effects again, I could ask questions. Although some she said the doc would have to answer.
Sorry I wasn't very precise about the hormone; not exactly a hormone. I was referring to a man-made drug which mimics the action of the human erythropoietin,w.hich stimulates the bone marrow to make red blood cells. The nurse used the word hormone and I assumed she meant this drug, because my husband takes it for anemia. And I have heard it called a hormone before. I shouldn't assume that she was talking about the same thing.
I would like to interject here that Exmouth sounds like a lovely place, you said it had a beach so it must be nice! Hope it's a warm beach, at least some of the time.
I very much appreciate all your advice; I think too once the first treatment is met head-on it will not be so bad. The unknown is the worst! As adagio said above, the mind will dash to the worst scenario if you let it.
I will think about Exmouth tomorrow!
Best to you, Mary
0 -
Thanks for well-wishes, adagio!
I will be sure to wear something with pockets! And buttons. My friend called earlier and said be sure to wear something with buttons, not pullover. I will take any med they give me, maybe they will slip in something good.
I hope you are doing well, it looks like you are all finished with treatments; I hope you are having a good life now and it is behind you.
I was in your city many years ago, and BC. I remember how beautiful it was, the mountains and wilderness. It was a friendly city too.
Best wishes! Mary
0 -
Hi Sylvia
The idea of using a breath test to detect cancer is very appealing. Perhaps it could replace the need for women to carry out their breast checks at home. As far as detecting dormant cancer cells, maybe we would be treating (with all of its risks) cells that may never become active.
I was reading in the paper today about a 19 year old who has died of cervical cancer. She was denied a cervical smear test because she was too young. An "expert" said it was very rare for anyone under 25 to get cervical cancer, there has only been 25 in the last decade. To me, given the age group we are talking about, 25 seems not so rare.
Alex (my stepson) is 24 today so I am off to Belfast to meet him.
Michael
0 -
PeterandLiz:
Hi - I haven't posted to this forum in a long time, but was reading to see what newest helpful information you, Sylvia and the others have posted.
I wanted to say to not consider this a recurrence with your wife yet. She has been having coughing ... and that can make the ribs hurt. The coughing can also be due to severe allergies, and you wouldn't think so, but even in February those can crop up. I know it's hard to comfort you, as you feel like the other shoe is about to drop, but please remember that there can still be many other things for these symptoms. As Adagio mentioned, the mind will make us think the worst - and that's natural. But try to remember all the other things that could be going on. With a cough, if she is not getting enough oxygen that could make her out of breath, but the root cause may not have anything to do with a recurrence.
Please stay hopeful, and know you are both (and your family) in my thoughts.
0 -
Hi Sylvia - Hi Everyone!
I haven't logged on here in a while, but I've been logging into the Post Your Daily Exercise forum. Those girls sure keep me active! I'm still doing 8 hours a week, 60 miles but recently have taken up mountain hiking. So on the days when I don't want to be in a gym, I will go on a 4-mile mountain hike (the mountain is right up the street from us). The first time I did it, it took 97 minutes, and now I can run it in 57 minutes! When I do the mountain, I will only get in 50 miles for the week, but the mountain is a great alternative to the gym.
So, I wanted to repost Sylvia's post from September. I came across this excellent post of Sylvia's, and pasted the links in our TNS forum, and wanted to bump it up here in case any newbies have not seen it - or as a refresher of information for everyone else here. Sylvia, you are always so helpful and looking out for us. You really radiate, how helpful you are.
Cheers - and I will be back for more updates and to read more about everyone. I haven't figured out breakfast yet and it's 11AM. Guess that means I should figure out lunch. LOL
Special thank you to SylviaExMouthUk for these links:
1. It is you and your body that beat cancer
http://www.canceractive.com/cancer-active-page-link.aspx?n=3473
http://www.canceractive.com/cancer-active-page-link.aspx?n=146&Title=Cancer%20survivors
2. You have the potential to increase your own survival ...
http://www.canceractive.com/cancer-active-page-link.aspx?n=2599
www.canceractive.com/cancer-ac...%E2%80%98Bioactive%E2%80%99%20foods%20tackle%20cancer%20stem%20cells
http://www.canceractive.com/cancer-active-page-link.aspx?n=1571
3. Ignore your friendly gut bacteria at your peril
http://www.canceractive.com/cancer-active-page-link.aspx?n=3431
4. To survive cancer longer, cut your glucose and carb consumption
http://www.canceractive.com/cancer-active-page-link.aspx?n=3451
http://www.canceractive.com/cancer-active-page-link.aspx?n=3132
http://www.canceractive.com/cancer-active-page-link.aspx?n=3117
5. Stop the spread of cancer
http://www.canceractive.com/cancer-active-page-link.aspx?n=1906
http://www.canceractive.com/cancer-active-page-link.aspx?n=3185
http://www.canceractive.com/cancer-active-page-link.aspx?n=509
6. Stress management helps you survive 'significantly' longer
http://www.canceractive.com/cancer-active-page-link.aspx?n=981
- TNBC Nutrition, Health, Info and Miscellaneous Articles
0 -
Peterand Liz,
I have been reading your post and I feel so sorry that you are experiencing such anguish. I have not corresponded with you before, I am comparatively new, but wanted to add my support to the previous posts that encourage you not to fear the worst and consider other things that may give the symptoms Liz is enduring.
I do hope that you will have news soon so that you know what you are both dealing with and I hope and pray that your fears are not realised.
Norma0 -
inspired - you truly do inspire me with the amount of exercise you do. That is so wonderful. I manage about 45 minutes of brisk walking daily and occasionally do this twice a day, but generally just once. So that would give me just over 5 hours of outdoor activity. Ideally, I would like it to be more. It is managing to fit it in around other things that need doing - but I do realize that it is very important.
0 -
Dolce, I think too it's inspiring and amazing all the exercise you are getting in. I was curious if you did much exercise while undergoing chemo? I had my first treatment yesterday and am in unfamiliar waters so far, I am usually very active and am hopeful I can continue that somewhat. Right now I feel pretty blah!
I read a couple of your links so far, sounds like exercise, yoga is the way to go for continued recovery.
Best wishes to you, Mary
0
