Thanks both 😊 The main message I have heard from other ladies who have been on this treatment plan for longer than I have is to stick with it and it does get better. I’ve certainly found that to be the case. It is true it doesn’t suit everyone but if you can tolerate it and it works then it is worth it based on the clinical trial data. Some ladies are stable on it for years, some have a reduction in their active cancer and some have even achieved no evidence of active disease status. I am choosing to be hopeful that this treatment will work for me too and I hope the same for you as well. If you do have side effects then there is also the option of lowering the dose so plenty of options if appropriate. And yes Ruby2016 digestive problems can be an issue (at both ends of the spectrum!) but I’ve found as long as I have the right anti-sickness, constipation and pain control meds then I can manage myself at home and feel more in control of the situation. My team tell me the goal is for me to feel like I am not on active treatment and they have many ladies at clinic who feel like this and I can honestly say on my third cycle that is how I feel. Don’t get me wrong - I do have days when I’m tired but overall it hasn’t stopped me and I’m not going to let it either 😉 Much love and positive vibes to you both x
I just wanted to add my input too to encourage GiulianaB. Firstly, a big thank you to Pawsome from me I sincerely mean it as we are both on the same treatment plan and I am probably going to echo a lot of what you’ve already said...
I had my second cycle of treatment today and I have mets in my bones. I don’t know the extent as although I’ve now had a bone scan due to a bit of a mix up with appointments, I won’t get the results of that until early next month.
However, until last week when I was on the week of NOT taking the Palbociclib (21 days on), I had no aches and pains. It was really noticeable and it was great for 3 weeks whilst on it, not to feel stiff and achey.
I’m quite an upfront person with the nurses and told them on the phone today and in person that I’ve had dreadful and excessive wind (I do have Irritable Bowel Syndrome) ) which has been met with good humour and today, they’ve prescribed a different laxative for me than the one I had for IBS. For me, a lot of wind is not an issue really, just not great for my partner - he told one of the nurses today that our cat had noticed it too!
I admire Pawsome for working full-time and climbing up hills - low energy is a chronic issue for me and my energy levels have dipped but I am adjusting my plans around that.
Best wishes to all of you especially GiulianaB and thanks again to Pawsome xxxxx
Hi. I’m on Palbociclib (along with Denosumab, Letrozole and Zoladex). I have mets in my bones and lungs. I’ve just started my third cycle of palbociclib and whilst I had some side effects for the first two (nausea which was sorted out with tablets) I’m now feeling pretty normal. I’m back working full time and out at the weekends climbing hills. Palbociclib is a new treatment that has only
recently been made available on the NHS and only available as a first line treatment. If it works for you then some ladies have got great results on it. I have yet to have my first scan since starting treatment but I feel so much better for being on it - my pain has gone and I have more energy. This treatment plan is very doable. I think with secondaries the treatments tend to be less harsh as they want to maintain your quality of life as much as possible.
They say there is only palbociclib.
I still have not recovered from the shock of the diagnose especially because it is a huge tumour.
Tmr I m going to the secondary breast cancer meeting at the Haven in London and it might be helpful to speak to other women who are taking this medications and see how they are/look.
Friday I have to repeat the liver biopsy because the first one did not pick up enough cancerous cells.
At the moment I have no side effects from the tumour not sure why I want to have side effects from a treatment, considering how bad it was for me the first time and the fact that I never went back to my former self.
I’m so sorry of your diagnosis, my diagnosis quite similar to you as it’s in my liver too. I was diagnosed January 2017, I can say that in the last 3 years I’ve had my ups n downs but I’m generally well, I was put on oral chemo Capecitabine which yes has side effects but I think are much more doable than a intravenous chemo. What plan have you got in place?
Sorry to hear that you've joined our club, GiulianaB. I've had ME/CFS for 20 years, before I had primary bc and it's a pig of a condition to live with. However I was on top form before my 2ary dx came along in Jan of this year, 7 years after 1ary dx. It's hard to tell where fatigue comes from sometimes.
I have wondered why we don't get ultrasounds annually, after a 1ary dx, only a mammogram of the side which wasn't affected by cancer in the first place. I had other symptoms which 'should' have picked up by a GP based on my 1ary dx, but this didn't happen. I decided not to focus on what might have been or on the 'if only's' as that would rob me of energy which I need to stay as positive and as well as I can. I hope you can reach some acceptance over what has happened...shout, rant, cry and grieve if you need to...then put all your energy into coming to terms with your diagnosis and treatment plan.
Wishing you all the very best, x x
I hope I have helped, I am a worrier by nature and wasn’t sure if I’d got on about myself too much. My intention was to give background to my own situ and not to detract from your own very valid worries and concerns. (As well as fatigue, I lack confidence and worry too much)
If I have helped in any way, I am genuinely pleased but don’t ever minimise your own experience- everyone’s situation is different and we’re all just doing the best we can. You have a right to feel whatever you feel and fear, anger, despair, any feelings, they are yours.
I just felt affinity with your fatigue being overlooked - and also the shock of feeling tired to being told Cancer is back.
Lots of love to you xxxxxxx
Hi Ruby 2016.
My moods alternate from despair mainly when I alone or cannot sleep to being ok as at the moment I have no symptoms apart from the fatigue and I would normally be quite happy person.
Thanks for taking this time to put it in perspective for me.
Firstly, a warm welcome to the forum. I’m a ‘newbie’ to a diagnosis of Secondary Cancer. I completely relate to your situation with feeling fatigued.
Words seem a bit inadequate but I am truly sorry to hear that you have a tumour in your liver and have been flagging up for several years that you don’t feel right.
I felt very frightened when I was informed of my Secondary diagnosis only last month. I’ve had blood tests on and off all year and finally got referred to Haematology thanks to a very vigilant and perceptive GP, it was thought that chemo may have permanently affected my red blood count. I have had fatigue for over 14 years (yes unfortunately and of course in a workplace, no one recognises it, I am a hard worker and just constantly pushed myself, to my own detriment). After years of saying I was exhausted, it was a relief to be referred. I wasn’t expecting the cancer diagnosis though.. I have it in my bones, not clear of the spread as only had the bone scan 4 days’ ago.
Having read other women’s situations on this forum and reading of women who are living well several years into their diagnosis, please try and take your diagnosis one step at a time. I’ve been on hormone treatment for nearly 3 weeks now and whilst I don’t feel I can run a marathon, I am ok.
I can only imagine how angry you feel after many times of telling medics things weren’t right. However, focus on you and your family right now and lean on all of us here. Our only difference is that we are all at different stages.
Sending you a hug and my sincere best wishes xxxxxxxxxxx
I hope this does not happen to you but it can happen if fact it happened to me.
I had a diagnose of primary breast cancer in April 2015.
It was a grade 3, 27 mm intraductal carcinoma. Lynphnodes were negative.
I had chemotherapy Fec-T, operation and radiotherapy.
It was ghastly
Never felt well afterwards, Always reported extreme fatigue.
They called it chronic fatigue.
I had a CT scan in May 2015, a bone scan and a liver function blood tests in June 2018.
Of course for the chronic fatigue GP sent me to talking therapies because it is in your mind or because this is what is available and somebody has to use the service. After that there was another service that needed patients so I was sent to that some new privately run physio service. Blood tests and ultrasound must have been too expensive,
I had mammograms every year and a yearly visit with the oncologist as they say that you are 'considered' cured if it does not come back within 5 years.
The last visit with the oncologist I had in April I was advised for the 'fatigue' to visit the cancer support center.
After 4 1/2 year I eventually got the CT scan.
The tumor is cm 11 as big as small melon.
Of course the fatigue was in my mind.