oncology visit ...and ad aspirin trial ....

[jackearls1000]

Good Morning everyone ...I hope you are all well and over the terrible weather we had last week ....well I'm half way through radiotherapy ...and I'm doing so well I was starting to feel a bit more " normal" and " positive" ...but yesterday I had an appointment with my oncologist ...the feeling of dread and fear came to me instantly over night.

don't be silly my husband said ..he is just going to check your well ....

so I went in the room ...he checked me and seemed quite happy ...nearly broke a smile which would have been all it took to ease my apprehension,

then he said ...well you've done all you can to stop this coming back but there is no guarantee in 7 ,,,to 8 years ,,you are a candidate for the ad aspirin trial ??? to give you added benefit ...he gave me some paper work about it ...told me to make my mind up before the end of radio treatment ....

I came away feeling stressed ....and broken ,,,,anyone else have any views on this trial?? I'm feeling doomed ...all over again ....xxx

[Lainey66]

Hi Jackearls1000

Firstly let me try to put you a little more at ease. You have done remarkably well. You have struggled to get to this level of positivity for a long time. Having the positive outlook that you have built up, under the amount of daily stress and strain of life in general with this cancer added to it takes courage, determination and a whole lot of fight. It is also half the battle. Our consultants seem to be caste from the same mould, cracking a smile appears to be hard work for them, and once they do they tend to look constipated! 😂 however, unfortunatrly, due to the nature of cancer, particularly breast cancer, there are no guarantees on outcome either long or short term. They cannot say that your ae totally cured and it wont come back because sadly it can do. For many it hasn't, but sadly for many it does. They therefore cannot commit themselves to giving us a 'cured' diagnosis. It is back to you to pick yourself up and say " Sod you cancer, I've got this far and I'm going to get a lot futher!," it is never easy and we will all be looking over our shoulder for the rest of our lives. Two things brought this home to me this last couple of weeks, firstly a medical form for my GP from my mortgage provider where the question was asked " how likely is this condition due to return?" The choices were:

Unlikely

Likely

Highly Likely

My GP ticked highly likely.

The second was the untimely death of Irish Author Emma Hannigan - who died this past week after her 10th diagnosis. I have to keep telling myself "I am here, I am alive and I am well!" I go to meditation that aids my positive outlook. Of course I have my odd 'wobble' from time to time, and then I have to kick myself up the butt and carrry on. We are here, we are alive and we will stay strong. As far as trial meds are concerned, in my book anything is worth a shot. I am TNBC so there are no meds for me, so my consultant suggested I try aromasin - usually given to women whose cancer is oestrogen fed. I do take it but give myself breaks from time to time as my feet and bones hurt like mad. All I can say really, is 'keep on keeping on' be strong for you and the people around you. Being positive really does work. Sending loads of love. Lainey66 xxxx once again writing a novel 🤣🤣🤣 🌻💐🌻

[Janny1306 in reply to Lainey66]

Well said Lainey 💐 We are here, we are alive and we will stay strong✊xxx

[Debs1962 in reply to Lainey66]

Hi, have you spoke to your consultant about alendronic acid? It is a treatment for osteoporosis, but research has found that is helps prevent bone cancer, and there has been a lot of stuff in the press about women with BC should be taking this drug as a preventative of spread to the bones.

Deb

[Lainey66 in reply to Debs1962]

Hi Debs, no I haven't. I havent heard of it myself - however I have GP on Monday and will disciss it then. Thank you for that info.

Xxxx

[Debs1962 in reply to Lainey66]

My hubby had read about it, and 3 years ago when I was diagnosed with BC was going to ask for it for me, but I didn’t need to ask, as I was diagnosed with osteoporosis so have it anyway.

[Hidden in reply to Lainey66]

Hi Lainey

My Oncologist put me on this new protocol when l’d finished my Chemo, l was already on Alendronic Acid but he stopped that & put me on the Zolendronic Infusion, twice a year for three years, 2 sessions to go. I’ve had no issues with it & it has in fact improved my bones following my last DEXA Scan.

The results of the trial showed that it only worked on Post Menopausal Women & as l was TBNC to l was happy to change from the AA to ZA which is much easier that the weekly tablet.

Trust you are doing well.

Mrs N xx

[Debs1962 in reply to Lainey66]

What did your GP say about alendronic acid?

[Lainey66 in reply to Debs1962]

Hi Debs,

I am back there at 11 today, for blood results then on for an xray of my spine. I wont lie I completely forgot about it on Monday so will ask today. Thanks for the reminder.

Lainey66 xxx

[Janny1306]

I know it's easy to say but a positive attitude really does make a difference! You don't say what type of cancer /treatment you've already had but its up to YOU now. Personally I would have any treatment,and take part in any trial they suggest as hopefully they know what they are doing.! I had a relatively easy time compared to some of the lovely ladies on here ,but right from the start I stayed positive✊We all have bad days but we have to carry on fighting and not let it beat us💪.We are all here to support you and I,m sure your family and friends will too. Wishing you all the good things . Xxx Jan

[Linkj]

Hi Jack earls, I know we say don’t google but google add aspirin trial, it is daily 70mg aspirin or a placebo, it is the same dose my husband takes for his heart attack risk. I made the decision just to take the aspirin as I didn’t want to risk being the placebo, I take an enteric coated one in case it upsets my tummy, as danger of stomach bleed and I haven’t told my oncologist or GP yet but seeing them both in the next few weeks and will confess, I will let you know what they say.

I am on the moving forward course and after slightly shaky start it is very good. Someone described what we live with is like someone knowing that a bus is coming straight at them, we all know we are going to die sometime, but in our case we can see the number on the bus. Luckily it stops in time!!

I think that explains it a bit, also try reading the Peter Harvey paper, After the treatment finishes, just google (again!) it, it is the thing that has helped me the most.

Stay strong lovely lady and as the Anglican morning prayers say “Thank you Lord for the gift of this new day”

Love Lin x

[Lorraineam]

I take ibandronic acid as they are not sure whether I have bone cancer in the skull (apparently it is in the wrong place) and don't get any side effects. It's worth discussing with your oncologist to help prevent bone cancer

[SuePS1958]

hi Jackearls - it is hard to keep positive especially around review appts when we recall what we heard before. I am 3.5 years on from radiotherapy now and that anxiety eases as the years go on. Its good to hear that the medical profession is looking at ways to reduce recurrence risk and understand the best ways of doing things.

Here is the link to the adaspirin trial: addaspirintrial.org/

I am on the Mammo50 trial looking at the positives/negatives of annual mammograms after treatment vs returning to 3 yearly more quickly.

My new 'norm' is different to before, and of course always would have been because life moves on and changes all the time. However, it is a better life, living life in a healthier way much more focussed on the things I want to do - like a couple of choirs, trying out new things. Like any life changing experience it takes time to get there but there are silver linings. Take care xx

[Haven44]

Hello. You've had some great answers and advice here but just to say I was asked if I'd go on the asprin trial but had read such good things about the potential benefits that I decided not to risk being the placebo and to take a low dose of 75mg per day anyway and neither my oncologist or breast surgeon had a problem with this. It is believed to help prevent metastases by inhibiting blood platelets that help protect the cancer cells - I'm being very simplistic but you can Google it, a lot of the research has been done in the US. The various bisphosphonates that have been referred to are now widely being used to help prevent spread to the bone and again there has been a lot of research done on these, particularly in Sheffield, that shows they can be used to reduce the chance of that happening with people who have had primary breast cancer (they have been used in helping to contain secondary breast cancer that has spread to the bone for some time.) It's not always easy to stay positive. I did pretty well through my treatment but people do tend to think that once you've gone through that you're back to normal, particularly if you have been positive throughout! I thankfully feel relatively well and am frequently told how very well I look but there have been set backs. Recently I had to have my Implant removed, which has been quite psychologically difficult and Herceptin has effected my heart functionality - although I am hoping this isn't a permanent thing. BUT, I am still here and although I have the odd rant against fate I do appreciate life so much more and the longer we all stay well the more likely they are going to find the next thing that improves our chances. My oncologist always says that they have chucked the kitchen sink at me and that every additional thing helps improve the odds so if you are able to tolerate it I'd go for the asprin, bisphosphonates etc, try and live as healthy a life as possible and most importantly try and enjoy life as much as possible. Best of luck with everything and the rest of your treatment.