Chemo has been stopped due to coronavirus

Hi @Caggy Mac. These are definately anxious confusing times! Have you had surgery and results with lymph involvement to warrant the chemo? 

Having chemo unfortunately weakens your immune system which would put you at high risk in this current situation so your oncologist may have thought that the risks outweighed the benefits at this current time. A recent trial (the Scot Trial) showed that patients who fitted into certain criteria (think it was stage 2 & 3 with 1-3 lymph nodes affected) had no more benefit from 6 months chemo against 3 months and had less side effects. 

I think you’ll have to put your trust in your oncologists decision but remember to take extra special care of yourself as your immune system could still be weak.

Take care

Karen 

Hi

I too have had my chemotherapy stopped yesterday  , I was on six months of chemotherapy now I have been told they will see me in 3 months! I've found myself gone into a complete melt down and am now very depressed bit by bit all our support is being stripped from us , making it worse by living in a tiny flat and not being able to go out at all.  I can understand why they've had to make these decisions and I know we are all in the same boat but it doesn't make it any easier , the oncologist is getting my mcmillan nurse to call me today . I just can't understand why at the time it was so important to have 6 months and now it isn't so really scared for the future, and not sure I will be able to get myself fit stuck in like this. Also like you very confused

Stay safe

Lots of love Peacock62 xxx 

Hi Caggy Mac

I should be having my weekly dose of Fluralolicil chemotherapy today but my chemo was cancelled at the beginning of the week after a telephone consultation with the oncologist. I was 20 weeks in out of 30 doses the oncologist has decided that because there was no cancer in the lymph nodes just into the vascular veins. The decision was made to stop and have a CT scan at some point to decide if any further chemo is needed. I have been told to still stay shielded and await a scan my tumor was removed end of July last year.

Stay safe

Mark

Peacock62, Caggy MAC ,

I am so sorry your going through this . As this unravels I find my views shifting . Every bit of me wishes it was different but all we have to offer is our support and friendship to help us through this .

Hopefully this time period can be reduced as they gain the upper hand with lockdown. Well I hope so anyway . 
Take care ,

Court 

Hi karen

Yes I have had surgery. They removed a large tumour and a record 51 lymph nodes 11 of which were positive for cancer. They have described my chemo as an insurance policy. I was a little annoyed that my notes said my oncologist had discussed the change in my treatment with me but she had not. I have questions I need to ask and am waiting for a telephone call. 

Take care

Caroline x

Hi everybody just an update I've been getting increasing anxious day by day about my cancelled chemotherapy no matter what they say I can't get my head round the fact that at the start because I have a high risk of reacurrance  is was so important to have the six months but now it seems not the case!! After reading in the news last week that the health Secretary had said buisness as usual for cancer patients , I called my Mcmillan Navigator , I said that a lot of people were being changed from iv chemo to tablet form , I said as I was on tablet chemo it should be easy for them to give it . He said the tablet chemotherapy was just as strong as the iv but he emailed the oncologist and has got me a telephone appointment  for next week so fingers crossed. I could have understood if it had been postponed but to completely cancel it all it what I can't seem to handle

Well stay safe everybody

Love Peacock62 xxx 

Hi All, 

This is really awful for you all. I wonder how they decide whose chemo stops and indeed  whose starts.

 I am due to start on 13 May, I am having a picc line fitted on Thursday, my oncologist seemed certain mine would go ahead, I have had what was deemed successful surgery with a large tumour removed and a temporary ileostomy. I had 40 lymph nodes removed with no involvement, but cells in the blood vessels and the duodenum.

I wonder if it's to do with the area that people live in? But then I live in the West Midlands which has a high %age of cases, but maybe not within the hospital trust I fall under.

I hope you all get some answers.

Please take care and keep safe.

Hi Phoebeb21.

I live in the Midlands and come under the Wolverhampton trust with my local hospital being New Cross. My chemotherapy was stopped around 4/5 weeks ago with 10 weekly doses left to have. I am not sure if or when they will restart and like yourself I have an Ileostomy not sure if that's temporary or permanent yet. So alot of things are up in the air at the moment I just go day by day and don't worry as all of these things are out of my control.

Stay safe everyone

Mark

Hi Peacock

I'm Surry to hear that you are so worried.  When I had my chemo back in 2012 the standard was for six months' treatment.  I had iv plus tablets, and after a discussion with my oncologist I decided to stop the iv and continue on with just tablets.  There was a trial going on at that time to see if 3 months of treatment was as effective as 6 months treatment.  As chemo was in my lymph nodes I decided to have the full six months treatment.  

I had to stop treatment on two or three occasions, and this really worried me, but I was a assured that this was standard practice if it was felt necessary.  I did have my full course of treatment but it went on a little longer to make up for the sessions I had missed.

I understand that following the results of the study three months of chemo is now considered to be the standard treatment, although this may differ from person to person depending on diagnosis.

When I talked through the effectiveness of tablets with my oncologist, she went through all the percentage differences of having iv plus tablets against just tablets, or stoping treatment.  I was not going to stop treatment.  The percentage difference between iv and tablets or just tablets was a very very small percentage hardly any difference.  

There has also been a lot of research into side effects of fluropyramidine drugs (5-FU or Capecitabine) and  (pilot) DPYD gene testing is now being carried out at some hospitals, hopefully it will be available throughout England very soon.  Following this research it is hoped that when this test is fully available it will pick up patients who are likely to have side effects from these drugs.  I am very pleased about this as I am one of the people left with side effects - which I always thought was due to my chemo but nothing was known at the time I had my treatment.

I am quite sure that you clinical team are looking after you well and by having the telephone appointment with your oncologist you will be able to discuss the reasons for their decision and also discuss your worries about stopping treatment.

I hope the appointment goes well.

Take care, and stay safe,

VickiLynne

Hi Peacock62

Sounds a reasonable question to me given your concern . 

I hope you hear something soon . Hopefully plans are also coming together to help this situation.

take care,

 Court