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Out of options

27 REPLIES 27
Member

Re: Out of options

Dont lose hope! 

We are "lucky" that this is a very common type of cancer and hence, half of the wolrd is researching to find more drugs.

Keep fighting! New drugs are on their way!

 

Member

Re: Out of options

You are going through rough time aren't you shelly thinking of you may I ask it maybe long stretch but is that mrs humphrys from James Cook Middlesbrough as that who I'm under

Cazzy xx 

Member

Re: Out of options

Thats my worst fear.   What about clinical trials  x

Member

Re: Out of options

Strange was thinking about her on Monday,but no not heard.xx

Member

Re: Out of options

Just thinking about Shelly and wondered if anyone has heard from her? Thanks..Kate x

Member

Re: Out of options

Shelly just wanted to semd you a massive virtual hug I hope you are OK and think your onc has a poor bedside manner to say the least I just wanted to reach out and let you know that you are not alone on here  take care Shelly 🙏 

Member

Re: Out of options

Hi shelley

 

what an awful time you are having....and what a dreadful oncologist, just to give you a prognosis like that and then walk away.  I am still traumatised by my first meeting with my oncologist who said I had 3 months if I didn’t have chemo, and 9 if I did!  All in the space of a few minutes and then we went home......speechless!  It shouldn’t be like that.  

 

People talk about ‘support’; getting professional support; talking to your family and it does help (if ever you can get it), but none of it takes away the reality of the situation.  And I hate the sweet talking sympathetic, ‘understanding’ platitudes.  I constantly wonder how others cope and I suppose I’m learning that no one really ‘copes’ any better or worse than I do.  Basically it’s a matter of distraction and using whatever ‘medical’ things are available.

 

anyway, I’m wishing you all the best luck in the world....and hope you get some proper decent professional attention....

 

mexico

Member

Re: Out of options

Hi Shelley 

So sorry you are having awful time. To be honest I just don't know what say. 

I did have a second opinion quite a few years ago after I had my reconstruction. I was messed around with for about year then the surgeon said he would re do it. I said no asked for second opinion which he arranged at a different hospital which worked out well had it re done. 

Don't know whether you can or not but Christiies at Manchester which is a world leading Cancer Centre. You could give them a ring. 

Libda 

Member

Re: Out of options

hi..just checking how u r

Member

Re: Out of options

Hi Shelly, just wanted to say I’m thinking about you. I don’t know much about second opinions, or where you’re having your treatment, but if it’s not at a leading cancer centre I would ask for a second opinion from one of them, not another doctor in the same hospital. Kate xx

Member

Re: Out of options

Hi ladies, sorry haven't been on for ages, had my one session of paclitaxel, then got ascites back again, so my next chemo was cancelled. Gave me another appointment which was around the beginning of September, I was 5 mins into chemo and I blacked out and had a seizure. They sent for the crash team, when I come round I didn't know what was going on. That was me back in hospital again. I had an appointment with my onc while I was there so I was telling her I wanted more chemo but she just had a excuse for everything. So she basically told me I wasn't getting for definite. I then asked for a second opinion, when the docs come round on the morning she said to me, this second opinion you want, she said I'd be one of the oncs you'd speak to. So I said what do you think then, she said I agree with mrs Humphreys. So I said how long do you think I've got left, she said weeks to months. Just like that and got up and walked away. I felt like punching her. She could of said I'm sorry or anything similar, anyway, I just thought I would fill you all in with my info. Not good news, but  when is there any.xxxx

Member

Re: Out of options

Dawn, so sorry to hear what you have been going through. The girls met up again last week and we were sad to hear what you have had to endure. Sending you love and hugs Codiesue from November starters 2014 xxx

Member

Re: Out of options

Hi Shelley 

Sorry you are having such a rough time at the moment hope  things start to improve soon. 

Think you asked awhile go if I had breast cancer before. The answer is no. Got breast cancer and bone mets at same time  age 57. 

Linda 

Member

Re: Out of options

Hi riversidedawn 

Thank you for your reply regarding your journey living with this horrible disease.  

On the whole not doing to bad thank you for asking. 

Main side effect on Vinorelbine is joint pains and feeling tired for a couple days after treatment . With taking the tablets weekly I don't get chance to rally around before next dose. I am due to get a CT scan back end of September by that time I would have had 11 doses at 110mg each dose. 

Linda

Member

Re: Out of options

Thinking of you, you’re certainly having a tough time of it. Hope the treatment your Onc is proposing is successful and the side effects are kinder than you’re expecting. Kate xx

Member

Re: Out of options

You are clearly having a very difficult time. I feel for you and am thinking of you x

Community Champion

Re: Out of options

Sorry for taking so long to respond, thank you all for your replies.

 

Shelly, I hope that you are getting on well with taxol. I found it to be a kind drug and tolerated it very well for 12 (I think) weeks with primary 5 years ago, and had 2 cycles of 3 doses back in March/April. Unfortunately it didn't work for me, fingers crossed for you, I've read on here ladies who have been on it for 5 years plus!

 

Clinical trials - I've been turned down because of the amount of treatment I've already had over 5 years. It's a difficult one, but if a drug works for me how do they know that it's that drug on it's own or in the combination I've had? They need to test on people with a similar history unfortunately. 

 

I saw my oncologist on Thursday, the latest chemo is not working for me so we really are scrapping the barrel now. He reckons my liver has 6-8 weeks if it remains unchecked. I've had blood tests and see him next week and possibly go on to vinorelbine which has a lower % chance of working but with more intense side effects.... but we'll give it a go.

 

Linda, I've seen the same oncologist for 5 years and whenever I've seen someone in his place I've been disappointed. I saw a different (junior) onc a few weeks ago before the start of my last cycle, and was shocked and disappointed by her consultation, lack of empathy, failure to listen, and much more. Because of that I pushed to see my onc asap - he stopped chemo, brought my scan forward and hence I saw him this week, he also agreed with me that the letter (consultation  and clinic notes) from the other onc was not fit for purpose. She's basically wasted several weeks and subjected me to unnecessary chemo.

I've had 2/3 separate cycles of 3 drugs so far this year: paclitaxel 3 x weekly doses then a week off, eribulin 2 x weekly does then a week off, Carboplatin once every 3 weeks. I don't know what the frequency will be for vinorelbine.

 

For now I need to get nausea under control (liver and bowel mets).

 

Linda, I managed 3 years "clear" after my primary diagnosis in September 2014. Bone mets confirmed dec 2017, but who knows how long they were bubbling away for before being spotted? Then spread to abdominal cavity jan/feb this year.... rapid deterioration from there. How about you? 

 

Time to get some sleep xx

 

Member

Re: Out of options

Hi Hun, I think that is shocking you've been turned down for trials, isn't that the idea of them. You should ask for a second opinion, your entitled to one. Hope everything turns out for you. Take care. Lots of love Shelly.xxx

Member

Re: Out of options

Hi Lynda, thank you so much. Had treatment today and so far so good. It's just this ascites is driving me mad. Had it drained 2 weeks ago and they got 10 litres. It's come straight back, I can't hardly breath, I'm hoping when I finally get an appointment they put a drain in that can stay in. 

How are you? Hope everything ok.

lots of love Shelly.xxx

Member

Re: Out of options

Hi riversidedawn 

So sorry to read your last chemo does not appear to be working. 

You mention you have had 3 different chemos were they one after the other? Your oncologist does appear to be on top of things with scanning after 3. You would think though that he would have someone to stand in for him when he is on holiday. 

Can't remember how long you have been on this journey living with cancer. It is gone 10 years for me. I have had 3 IV now on a second chemo in tablet form.

Fingers crossed things are not as bad as you fear and another treatment can be tried. 

Linda 

Member

Re: Out of options

Hi Shelley 

Just want to say hope everything goes well tomorrow for your first round of taxol. 

Linda 

Agy
Member

Re: Out of options

I am so sorry Riversidedown and Shelly10. It must be scary. I hope the treatment will work for you for so long, until something new is introduced.

 

I am surprised trials are not available. I thought that in the first instance they are offered to those who have less options left.

 

Thank you for writing about it. Maybe it will be easier for the rest of us when we get to this point.

Community Champion

Re: Out of options

Sorry to hear this Shelly, but hopefully this will be the drug for you. I'm nearly at this point too. I've tried 3 chemos for 3 cycles followed by scan.

I saw my onc last week as I can feel lumps in my abdomen, he organised a CT scan but I cant see him for 2 weeks as he's on holiday. He also cancelled my 3rd cycle due next week as no point if it's not working - so from that he agrees with me that the lumps are more spread otherwise he'd push on with chemo.

We've tried the most effective IV chemos, so now it's working through some tablets and potentially hormones to see if anything can help.

I've been turned down for trials because I've had so much treatment already. 

Member

Re: Out of options

Thank you turtle.

so do I, hope some trials come up. I'll try anything.

thanks for posting, take care love Shelly.xx

Member

Re: Out of options

new drugs are being introduced all the time i hope that the chemo you are on lasts until one of the new drugs will be offered to you x

Member

Re: Out of options

Thank you Rachel, I'm hoping so too. Good luck and hugs to you.xxx

Member

Re: Out of options

Hopefully this option will be very successful for you. Sending love to you xx

Member

Out of options

Just got a date for 23rd august to start new chemo, told me there's no more options after this one. I'm gutted. My heads all over the place.