To have the op or try alternative

Okay, where to start.

Tuesday evening, 13 November, got cramps in left foot which just would not resolve. With that also had an ache in left leg, off-centre of the shin halfway down towards outside edge. Uh oh. Potential DVT? Rang 111. Had to wait for a doctor to come back. Cramps eased off by time he rang but said to get to A+E. Sister took me and 3 hours later I discharged myself. Yes, I know. Wrong you think. But I had had enough of the waiting around. I was very hungry having not had anything to eat. At the time of the cramps I was trying to get my tea! He said in leaving to get some food I would be discharging myself! Nurse who had taken bloods before I saw the doctor hadn’t taken enough so Phlebotomy would not process. Doctor had to take more and did. This would have been another hour of waiting for them to come back after being there already for 3 hours! Then the doctor had the nerve to say that because I would be discharging myself the new bloods taken would be binned! And they probably have been. I tell you, that’s when I really exploded. First cannula was beginning to hurt which was in the back of the hand, the stress, anxiety, etc, just got to me. They took 10 minutes to send a nurse in to take out the cannula. I had calmed down by then and she was nice. She wasn’t any of the people at fault. I had to give my details 5 times – reception, triage nurse, A+E reception, nurse who took me in to A+E and finally the doctor who saw me. Unbelievable. The cannula was taken out - a lovely bruise now forming. Off home.

REMINDER TO LADIES ON CHEMO – SHOULD you EVER need to go to A+E, make sure you tell Reception YOUR ARE ON CHEMO. You are fast tracked and SHOULD be put into a cubicle with a door. This is to keep you away from ANY germs/bugs that people may bring into A+E. My local hospital also has an Urgent Care Centre all within the same area. I didn’t advise that, and is probably why I was there for so long. It still took around 40 minutes for the doctor to see me though!

Now to the Radiology/Oncology appointment on 14 November. Upshot is that I will be having radiotherapy on the boob. This will be whole breast treatment. I will have a CT scan with planning session on 23 November. That same day I am due to have my last EC chemo but this is an unknown factor at the moment whilst the radiology/oncology consultant talks with my oncologist to see if this will be necessary. If I do have the EC I will need the following 3 weeks to get over it before any radiotherapy can be given. Doc says she will need this time to do the computations. Expected start time for radiotherapy 14 December.

Radiotherapy will consist of going only once a week! Doctor said it will be 5 sessions in one! Has anyone heard of this scheduling?

As I told you I had started to get lesions going red/pink on or near the surface of my boob. I had wanted something done about them! Radiotherapy was the only thing they could offer. Refused at the time. But they have gotten worse and new nodules are appearing in the outer quadrant and below. My research has not turned up anything else. Mainly, refusal to be given answers from well-known hospitals. Disgraceful! Get a referral from GP, no reply to emails, etc, etc, are their stock replies.

So, once again, I am having to take a route I did not want. I just hope I get through it alive and in reasonable health!  See those attending on Saturday with big hugs.

Love to you all

Oh boy , you are having a time of it!!!!

Re the RT - there has been a trial going on where they do as you have been told, fewer but higher doses. I forget the name of it now.

Sounds like you need a hug.

xx

More big hugs xx

Hi toxophilite

Found a trial a while back called START.  Doesn't quite have the dosage that's in mind for me but I think this was the start of the change.  I thought you had to go every day for as long as they thought you needed it, 15, 25, 35 sessions!  But I did find something about how the radiotherapy works - RT induces direct cell death by causing single- and double-stranded DNA breaks.  RT also promotes immune-mediated cell death through the increased release of tumour antigens, the induction of inflammatory cytokines, and the transient overexpression of cell surface receptors. Together, these mechanisms facilitate effector T cell killing of irradiated tumour cells and priming of antigen-presenting cells to increase the adaptive immune response against tumour cells elsewhere in the body, in non-irradiated areas.

Interesting.

Hi A couple of things that might extend your understanding ...

I'm not saying this is the case for you but I had terrible cramps during chemo but before the period of great unwellness. Turned out to be low magnesium levels, which the docs only identified when I was so ill they were testing everything. Problem is that Mg testing isn't usually included in a full blood count. Might I suggest that the next time you have a scheduled blood test, you ask them to check your Mg levels too.

And on radiotherapy. It's not the number of sessions but the number of Grays you're given overall. Different places give RT in different fractions but the total is usually somewhere between 45 and 60 grays. There have been various trials testing different levels but I confess I haven't been following them. 

If you're already having skin problems, you'll need to pay even more attention than most to your skin during radio. I used R1 and R2 cream and they were wonderful but there are others. Make sure you avoid cream containing sodium lauryl sulfate. If you do get lesions, then I highly recommend mepilex dressings. They self stick and peel off easily but protect the skin really well. They're quite expensive so you might have to fight for them (I didn't but some people have had to) but it's worth it. 

It sounds like you're going through a rough patch right now so here's another big hug for you from me.

Have you got a Medical Alert card with your chemo info Chloecat? Just flash that at A&E and fast track. Saves having to do all the talking and repeating yourself.

Hi All

Well, I asked the question, didn’t I! Prognosis. They said I had 18 months left to live! Responded with, ‘Well, I have bucked the trend so far and intend to continue to do so’. I think they thought I was going to break down in tears. Didn’t. Unsure if this prognosis will be as a result of everything they will be doing in the meantime. Positive thinking will get me through all of this.

As a result of the lesions forming under the skin and on it, quite a few now, I am being fast tracked for radiotherapy. I have had my CT and planning session and first radiotherapy will be on 4 December – not sure yet of further dates planned. 5 x weekly sessions giving 6Gy per session. This will ‘irradiate’ me with a total of 30Gy. Normally it would be a daily dose for 5 days of 2Gy per day over the week (Mon-Fri) for 5 weeks giving a total of 50Gy although when I questioned Radiologist she quoted 40.2Gy as a standard. As I was having pain and the lesions finally being recognised as ‘growing’ they realised what I had been saying for weeks during the chemo. This is why you really need to have a consistent oncologist on your case, not just another member of the team, to see how the breast is doing physically by one person, not just through the scans. I have ordered the latest so should get them soon so I can have a gander. Was told that radiotherapy would give a ‘good result’. At last consult with oncologist, got them to quantify the ‘good result’, percentage-wise. They said 85% but can ‘range’ up to this %. So long as it reduces the surface lesions I will be happy. These were what were ‘bothering’ me the most.

Last cycle (4^th) of EC chemo was cancelled. That would have been on 23 November. If I had had it they would have had to wait another 3 weeks for me to recover from this before radiotherapy thereby delaying it further! They seem to think that chemo is resolving ‘scarring’! Or that the total area of cancer is ‘softening’. That’s why they kept me on the chemo so long. BUT clearly it was not addressing the surface lesions. Just don’t know which of the cancers I have that is doing the growing!

Liver lesion has not changed on the dedicated Breast MRI done on 19 November compared with the Liver MRI on 24 October, I think. Having said that they may have compared it to the Ultrasound on the liver on 9 November where measurements were taken. They said that they hope that chemo will deal with this which means, I suppose, that I will be going back onto another chemo (or the Paclitaxel which would have followed the EC) after the radiotherapy which may also deal with the rest of the tumour in the breast. Oncologist will think on this.

Surgery - this would be difficult due to tissue viability from incisions at the point where the lumps/nodules are forming just under the skin on the crease below the boob. Suppose we will have to wait and see what the radiotherapy does and any further chemo I may have to undertake. 

Have been a bit chesty lately which has seen me a bit down these last few days and mollycoddling myself until I read my Stars: “Trust your hunches and aim high, as anything is possible at the present time. If loved ones act as devil’s advocate, listen but don’t be put off. Believe in yourself and you’ll go far”.

So today is Day 1 to pick myself up, dust myself down and start believing in myself again. I can do a lot more to enhance my lifestyle. Diet has not been good and can be easily rectified. Must do more exercise. Could go and get ozone therapy and/or even Vit C IV injections – this latest one not had yet – may do some good. I WILL bounce back and defy the odds. Watch me.

Love and virtual hugs to everyone on this journey

I had one of the best conversations with the matron /BCN about the the choice to do nothing at all

i asked the question what are the alternatives, in a similar fashion to yourself

firstly she said she couldn't discuss other patients due to confidentiality, I'd asked how Rio Ferdinand's wife had tragically passed away so quickly when they'd been told the stock response of 2 to 5 years 

I said I didn't need specifics, I simply wanted a better understanding of the statistics which were affecting my decision to refuse chemo. 

Firstly she acknowledged all of us are different 

then she said that what kills us more quickly isn't cancer but sepsis so obviously I bang the drum on that topic

then i said if the statistics show me what happens if I follow your prescribed route do you have any statistics to tell me what might happen if I choose an alternative treatment regime or if I choose to do nothing 

she then says that they do have  a lady under their care who chose to do nothing, although I didn't push for what her version of 'nothing' was but she's still alive 13 years later and unprompted she said we'd consider that a success with all the treatments we offer

which I found to be a very sobering statement indeed 

Their expectations are actually pretty low

and they have no contact with those who fall off the end of the treatment conveyor so they don't have first hand experiences like we do on here 

what I can say is that one lady I met at the kadcyla gig was on oral chemo for liver mets for six years and last time I spoke to her she hadn't had to move on to kadcyla yet

i know of another lady who was given a year 4 years ago

i found myself plodding up 1237 steps to a Buddhist temple the other day, as you do, I wanted to give up and go back every 100 or so steps, mostly because they were so uneven but I kept going and I have to say it was an amazing experience standing on the platform with the gold Buddha 

we don't know what we're capable of until someone pushes us

Carolyn 

xxxxx

 No image ? And I can’t edit on a phone or tablet ??