Marije, Carole Baggerly wanted to promote adequate levels of vitamin D after she had breast cancer and discovered that adequate levels lessened the risk (of all cancers apparently) and that if you did get it you recovered quicker and were less likely to have complications/secondaries.
She wanted to know why it was not common knowledge amongst the general public and why only scientists knew this. Why wasn't it being shouted from the rooftops? How come it was not in the news? In the papers? She set about publicising it all and I saw her on a talk show and joined D Action in 2008. My vitamin D 3 levels have been measured twice a year since then and my lowest was 65 ng/mL any my highest 104 ng/mL.
It is very important that you get your levels tested because your results will depend upon your skin colour, your habits (if you spend time outside on sunny days or cover up because you are afraid of skin cancer), where you live, if you use sun screen in fact too many variables to mention.
You can explore the site for hours so here it is again:
As I say I am irritated/miffed because I should never have got it so now I think that I may just as well enjoy a glass or wine, eat a bit of chocolate, weigh a few more pounds without trying to get it off etc.
I thought the evidence on eating "well" was fairly weak? Sorry I am not well read up on this.
Did they supply any information i.e. a paper that proves the best diet? Just being lazy, sorry, as had intended to have a look around myself.
Yesterday was the monthly primary breast cancer live chat and it was on diet and exercise. I took part and asked about the various conflicting and overwhelming amounts of info that was available on diet and whether there was any research based findings or any studies being conducted. Basically, all studies that have been conducted show that a well balanced healthy diet, maintaining a healthy BMI and keeping fit & active are all more important than excluding certain things from our diet. I had been looking at excluding dairy and limiting sugar but I know me and know that will lead me to do exactly what you describe so I'm going to concentrate on being healthy. All things in moderation. I wasn't the most active of people before this but I've always eaten well so I shall continue with that.
Hope that helps,
Now that we're coming to the end of chemo, I'm inevitably thinking about the future. I'm sure we're all keen to put this experience behind us and move on with our lives but to some extent it's always 'there', isn't it? I sincerely hope that Secondary breast cancer is not something that will ever be part of any of any of our lives but given the recent publicity from Breast Cancer Care and their Secondary, not Second Rate Campaign (http://www.telegraph.co.uk/wellbeing/health-advice/secondary-not-second-rate/), I know that it is something that 60% of us will receive no information from our hospitals on how to access hospital care should we experience any of the signs & symptoms of secondary breast cancer (https://www.breastcancercare.org.uk/sites/default/files/secondary-breast-cancer-report-2016.pdf). And yet early diagnosis can make a tremendous difference to treatment and quality of life.
So I guess it's down to us to make sure we are informed and know how to act, when to push for referrals and when to not give up. I've attached an infographic from abcdiagnosis re the signs & symptoms and there's also this link to BCC's quick guide: https://www.breastcancercare.org.uk/sites/default/files/files/pub-secondary_quick_guide.pdf
I'm not trying to be pesimistic, I'm just aware that now is the time to ask our teams what their policies and procedures are should we need to contact them again. And I'm a great believer in knowledge is power. I've had such fantastic care throughout my treatment for primary breast cancer I would like to think the same were available should I needed to return. Unfortunately, I rather think we might need to be a little more pro-active to achieve that.
That's interesting Blueash.
Same here, last person I thought would get cancer. Young, active, non smoker, non drinker, healthy diet and I was still breastfeeding my youngest! Frustrating isn't it.
So was your survey about whether vitamin D would help cancer patients. Prevent cancer, or give survivers a better chance?
I have decided to become a bit of a rebel with regard to food and exercise because nobody could have a healthier lifestyle than me and I still ended up with breast cancer!!
I am careful with my diet, exercise, have breastfed babies in short I was the last person that should have got it.
Did I mention that I was on the Grassroots survey? Look it up here:
I used to live in the USA and Carol Baggerly was on all the talk shows promoting Vitamin D.
Well done everyone getting their last chemo this week!
I have mine on Friday.. really exciting and really dreading it at the same time..
also, because we've been looking forward to this, but actually: it isnt over when its over, as I still have Herceptin and Tamoxifen.. but hey ho... the worst part will be over.
I've not really witheld from any foods, but really looking forward to having my taste buds back!
I generally have a good diet, but the more I tell myself NOT to eat chocolate, the more I do it! So frustrating.. so thats definitaly my weakness, and I constantly feel guilty and thinking that will make the cancer come back... cause cancer loves sugar, right?
Anybody else has things like that
Good Morning Ladies,
I'm so happy for all of you finishing chemo. It must be such a relief to be at the end and know that from now on you can concentrate on feeling better every day, growing a lucious head of hair and getting your life back. Enjoy the freedom!!
I've still got 9 weeks of chemo to go.....but I'll get there too.
That is interesting reading. Actually, I'm quite shocked that a bigger survery hasn't been done on the subject, you'd have thought it was quite important! Such as small survey makes it difficult to interpret the results, plus it's not exactly handy that they don't know whether the longer term drop in immune system markers actually makes a practical difference. Anyone who's a smoker and wants another incentive to give up might want to have a read though!
While I do completely agree that the majority of the millions donated to cancer research should go towards curing cancer, I do also think a little more could be done to investigate 'best practice' for during and after treatment to help eliviate side effects and other longer term effects.Surely the cost of doing a full scale survey on this and the practical effects of it wouldn't break the bank?
I'm afraid it isn't going to stop me on the soft cheese front though! I will definitely be a little more mindful if I do come down with something, plus I'll take your advice on the flu jab.
I don't know about the dietry issues but according to research from Leeds university, we remain vulnerable to infections for up to 9 months:
My oncologist was talking about this in relation to the importance of having the 'flu vaccine. He said to wait the full cycle (min 3 weeks) and then book in with gp which I'll be doing.
Can't see me waiting 9 months for soft cheese though!
In case anyone else finds this helpful, I asked my onc yesterday about when I could expect my immune system to be fully 'back to normal' after treatment, so I can start doing all the things which are currently on the naughty list (mainly involving eating soft cheeses!!). He recommended that I assume it isn't back to normal until the full end of the last cycle, ie after 3 weeks.
That's such good news! Congratulations!!! My last chemo is next Thurs. I really hope my bloods are high enough to just get it done (they were a bit low last time). Because then after that it is just rest and getting better!
I slept so badly last night - was awake for over four hours from 2 a.m. Feeling really groggy now. Just got to get packed lunch ready to take with us and then I'm off. I couldn't have the lymph nodes removed after the Mx as had a recon at same time and they wanted to get chemo started asap, so only five weeks after the op which I hadn't fully recovered from.
Glad to hear that weight loss might be easier. It must be something to do with getting more active as we feel better - hopefully. My clothes are all so tight now and I'm spending most of my time in 'comfy' clothes - not the best look when you're bald as well!
I also want to say a big thank you to everyone on this forum - your posts keep me going and I've learnt some valuable tips on the way. Drinking my miso soup now!
Love to all and hope everyone doing as well as possible.
Hi Terri and all
Tomorrow is also my last chemo. I have chocolates for the chemo department and a card and hopefully I won't ever have to go there again, although they have all been very kind.
I started the steroids this morning in preparation but the fatigue is so bad I've been able to have a sleep this afternoon and been dozing in front of the television this evening.
I'm worried that I've put on quite a bit of weight in this last cycle especially in this last week since I could taste properly again. Hopefully it won't affect the dosage tomorrow.
Next step for me is appointment with the surgeon next tuesday to sign the consent form for the axillary lymph node clearance surgery to be followed by radiotherapy, so with any luck this will all be over by the end of the year.
Good luck tomorrow Terri - I will be thinking of you while I'm sitting in my chemo chair!
Sweet dreams everyone xxxx
It's a tricky situation, isn't it? I'm also getting a bit of peripheral neuropathy and am going to have probably a similar conversation with my onc on Monday. It makes it so difficult that they can't tell for sure what is happening in our bodies, so we have to make decisions on 'best guesses'. It must also be really frustrating for them as doctors not to be able to give us the answers we need.
bagpus you have definitely helped me. I had/have HER2 positive with a tiny cancer 3mm or as big as a peppercorn. It was removed with clear margin and no lymph node involvement. The wanted me to have chemo and Hecerceptin to pick up any micro cells.
I am having a fair bit of pins and needles which they are afraid may be neuropathy and are talking about stopping my chemo I have had 3 rounds so far and continuing with the Herceptin and rads. When I asked if that would be adequate/sufficient seeing as they wanted my to have 6 cycles he said they did not know! What he had to judge was whether or not continuing would ruin my nervous system and not give me much more benefit with chemo because my best weapon is the Hercpeptin.
I have got to think about it and let him know before my next appointment.
You're very welcome. I wasn't best pleased when I found out that I'd never really know if I'm 100% clear or not, so I really sympathise, particularly if they'd given you the impression that you would have that certainty.
I can understand your frustration. Unfortunately no-one will be able to give you an absolute answer about whether the cancer has gone completely. There's no way for them to detect microscopic cancer cells (apart from in tissue that they've removed and analysed), so they won't ever be able to give any of us an absolute answer.
The best you'll get is a "no evidence of disease" response, which is the same as being in "remission", and it sounds like this might be what your oncologist told you? This means that as far as they can tell there is no cancer left. It's just that tests don't exist to give you a more definitive answer.
One way to look on it is that everyone in the world is really in the 'no evidence of disease' situation. Anyone could have cancer that's at an undetectable stage, we're just at a higher risk of it.
Perhaps you could go back to your oncologist and specifically ask him if he considers you to have 'no evidence of disease'/be in remission? He might not be able to say for sure until after all the treatment, but if he does say yes then this really is good news. It's the best that any of us will get.
If you struggle with the not-knowing then you could consider seeing a counsellor to talk it through with them, this might help you to come to terms with the situation. I went to see one when I was diagnosed and she told me that coming to terms with the situation post treatment is actually the thing many people find the most difficult. I'll definitely be booking an appointment with her regardless of my outcome because I know I'll need help processing everything that's happened and learning to live with the aftermath.
I hope this helps xxx
Definitely feeling a build up of the fatigue. I can be fine one day then the next I only just make it to lunchtime without having a nap!
about the neuropathy: I haven't had it really bad yet, so take all this with a grain of salt or many. I have heard that calcium and magnesium are effective at preventing it, but not recommended with all chemotherapies. See reference here: "Prevention and treatment of chemotherapy-induced peripheral neuropathy. " http://www.ncbi.nlm.nih.gov/pubmed/24352178
A friend who was told to stay away from magnesium supplements by her oncology team was informed that vitamin B12 might be good.This website mentions B12 along with a host of other options (and states that calcium & magnesium is useless: oh well!).
Lots of these options look like a lot of fuss, bother and expense, but I know I prefer to have options to work through, so I thought I'd link to it. I used a TENS machine for early labour and it was great, although when I first read about it I thought is was insane.
Hi Belle & Terri,
I had tearing in the morning since the very beginning (late June) and finally it became a full day conjunctivitis infection (with mostly still tears, eyes not very red) three weeks ago. The GP prescribed fusidic acid cream to drop in the eyes twice a day, and after that it cleared up: I don't have tearing in the morning at all anymore. So if you have tearing &/or itchy eyes, might be worth checking with the GP to get it treated. As far as I know it has nothing or little to do with losing eyelashes: I've lost half so far, but it started before I lost any and stopped now that I have very few.
No, I kept going right to the bitter end. It was 3 x FEC and 3 x T in the end. The numbness in my feet and hands is really bad now. They weren't monitoring my physical reaction to the T in that way very well.
I think you are right about Herceptin though. We do have that to fall back onto if we can't tolerate the usual chemo.
Hi Happyboobs2 - Thank you for the hug, here's one for you too. I had a session with my counsellor today and we were talking about the annoying things people say. When my family ask how I am now, I just say "I'm fine" as that's all they want to hear.
Flopsy - I don't know is she is still to have a mastectomy. I don't think she knows either yet.
Oh and my eyes water too, especially in the morning when I wake up for about half an hour.
My eyes water! I do have some lashes still but less than I started with. I was told to put a hot flannel on my eyelids several times a day. I read about it here:
I am doing that but if it works it does not work well - still it might be worse if i did not do it!!
Flopsy did they stop you after 2 T? The reason I asked is because I saw consultant today and mentioned my slight pins and needles and he said he wants me to have next chemo which is number 3 but he will reassess the situation after that. Meaning he might lower the dose, given me longer in between or stop altogether.
I know they stopped Hazel early and I wondered if they are more wlling to stop us because we are all on Herceptin and so long was we have had some chemo they can continue with that so they are not abandoning us. Perhaps if we did not have HER2 they would be persuading us to continue.
Any idea if she is still having a masectomy?
p.s. I'm another of the Chemo success stories as ultrasound could not find my tumour after 3 x FEC
and 2 x T. It was there on a Mammogram though. No idea what my lymph nodes are doing.
The plan was to use chemo to shrink the lump and then do a lumpectomy which should be sometime in the next week or so. If the lump didn't shrink, most likely a masectomy would have been needed due to size and placeement of lump.
just wanted to give you a hug....
It is very difficult for others to know what to say and I have been on the receiving end of some shockers!!!
However I would prefer it if people just didn't say anything, if they know you then just a normal chat is ok.
if they don't know you then leave well alone.
I had a complete stranger come up to me and say"onwards and upwards"...I am afraid to say that I was a bit miffed.
As I said ,just wanted to give you a hug.
That is actually exactly what I needed to hear. I had a (reconstructive) mastectomy before chemo, so it is purely a preventative measure. And I've been cursing at chemo ever since, really seeing it as the evil poison just making me feel bad.
But.... This just proves that there IS a reason (duh) and that it's not for nothing..
Oh, it is good to hear that chemo really does work. Sometimes when you're feeling bad you do start to wonder. I'm having chemo before surgery too and although my tumour is still there it is definitely smaller and softer. With 3 more months of chemo maybe it will disappear as well?! Fingers (and everything else) crossed.
Just wanted to share this with you.
I was at the Look Good Feel Better course today at my local Maggie's centre, which was fab by the way, loads of great stuff including lancome, chanel, YSL, to name but a few. Still need to practice putting the make up on being a non-girly type though.
Anyway, got chatting to the girl I had been sitting next to after the class and she is having chemo before mastecomy. She has had 3 FEC and 1 T and her tumour has gone! Not shrunk, disappeared! She, like me, is also on herceptin. So for all you ladies who are suffering bad side effects from chemo at the moment, hang on in there as horrible as it is, think of the good it is doing.
I seem to be losing more hair on my head, but leg hair is making an appearance! Grrr..
I had a weird dream about shaving my head (which I still havent done.. I got a bit of a monk cut at the moment...bald on top, still left on sides..), and also someone chopped off my arm, and told me I needed a new arm stitched on...