Chemo not working

Hi

I had radiotherapy 18months ago, the lungs are still stable, i do not know about others,

For me was so much easier than other treatment i have had, though everyone, is so different, that's for sure,

Please do not read about others, can be so scary, yes it may cross our minds, though to see it written down, it hits you in the face,'Have you given the mac site a ring speak to one of the nurses, i have done that before,

xxx

Hi Ellie,

I have to confess, I’ve looked at the experience of others and it is scary! I haven’t seen much about radiotherapy success though. My cancer is very aggressive so I think any respite will be temporary but I have to hope that I’m one of those people that immunotherapy works for.

I am going to talk to our local hospice nurses as I’m already hooked up with them, though I am not sure what I want to ask for apart from reassurance that it will all be fine…!!!!

thanks

Rachel

Hi

We all have to do what is right for us,

What immunotherapy are they offering you.?

I did immunotherapy, every three weeks for two years, again like chemo works for some though not others No we do not know if it will or will not, though we give it a go.

I found Radiotherapy quiet easy, or easy as can be,

I wish i could advise you the best way forward, i can only advise in such of what treatment i have had and how it effected me. I do think yes get in touch with the local hospice and have a talk with them.

I found them so much better than my hospital in every aspect.

They are offering me pembrolizulab every six weeks. The idea was to give it with the chemo as this has proven to be very effective but that’s obviously not worked out.

I just need to get my head around the chemo not working - I never thought that it would be cancelled! 

Right, well in one way i no how you are feeling,

My very first chemo which we all sign papers for, was to have six, first one on the Monday and gave me a heart attack on the Sunday, i pleaded with oncologist to give me the rest, she would not, after six weeks rest from the heart attack, she started me on another chemo milder one, and that did not work, and i was given Pembrolizumab alone, no chemo.

I finished December 2018. and stayed   stable then Radiotherapy,

Waiting for results of two scans and a chance i need more treatment, though at moment all up in the air.

Try and think why would it not work for you, i did and a few swear words helped along the way,

Talk to the Hospice, and i really hope that yes it does work for you, in one way the chemo has not, so you have to try the immunotherapy i would say

Keep us updated xxx.

Hi Rachel

I had a tumour in my C7 - that's how i found out i had cancer. 

The vertebra was crushed by the tumour and removed at the end of August. I had to wear a neck brace 24/7 for 4 months, which certainly was not comfortable, but it's now off and my neck feels fine. I'm still on some pain killers and anti-inflammatories, but at a much reduced rate. I have no pain now.

There is/was some cancer in the T1 and T2 and I had 5 sessions of radiotherapy.

I'm now on chemo and immunotherapy and having a scan next week - i had quite a few bone mets - apparently low volume, but in lots of places. Oh - my primary is in the lung, but that's small.

Maybe you can ask about a vertebrectomy?

Take care

Vivien 

Hi Vivian,

thanks for sharing your experience.  Surgery hasn't been mentioned - I asked about it right at the grinning and was told that there were too many things to take out,  so no,  but I will ask again.  Of all the tumours,  this is the one that scares me most as I assume that it will eventually lead to paralysis.  I think that,  like you,  I've got lots of small tumours,  though I can definitely feel something happening in my neck recently,  so something is getting bigger.

I just have to hope that immunotherapy works for me - I have been told that I'm a good candidate for it because my PDL-1 level is very high,  but I know that this is no guarantee.  Oh well,  off for an immunotherapy session today (my second),  so fingers crossed....

Rachel

Good luck Rachel. I didn't ask what would happen without surgery, but the neurosurgeon told me he wanted to wrap me in cotton wool and wanted me in hospital that day, so I suspected paralysis was on the cards.

I think my PDL is zero!

Hope the immuno does the trick!

Vivien

Hi Rachel,

I have aggressive endometrial cancer which is currently stable. I had surgery twice then chemo. I also had a 5 day course of radiotherapy to pelvic bone mets which has cleared it. There was no evidence of active cancer on post treatment CT in September. I wish you well with your treatment.

A x

It’s good to know that aggressive cancer can be stabilised - I know that everyone is different, but it’s nice to hear about people in similar circumstances.

I went for my immuno dose yesterday and one of the nurses suggested that I get a second opinion. The decision hinges on the appearance of the tumour on my spine, but I had been suffering back pain in my shoulder and down my arm which receded (and has now gone) after my second round of chemo, so I think that it was missed on the first scan (the scan that they used was also done 6 weeks before I started chemo, though I also had a PET scan about two weeks before).  It can’t do any harm to ask for another opinion.

Rachel