Update well I'm in hospital with temp ?infection only they can't find where.
My important ct scan is due tmrw, this hospital say they will do it But I've no faith as I did have cubicle as high risk of infection, last night they moved me to a bay of 5!
Ive had antibiotics and fluid drips and temps down to 37.2. I just want to go home.
Drs saying my groin is large, puffy and discoloured. its still leaking lymphatic fluid.
UPDATE
I started cycle 4 last Friday. I had lymphodema in my left leg, same side a groin lymph nodes with cancer.
Monday I started to leak from what I think is the biopsy site (done before chemo started to confirm anal cancer spread) its clear fluid weeping constantly. I sent photo to oncologist who requested to see me.
Devastated news, he "thinks" it looks like an ulcer and this is the tumour coming to skin surface and breaking down.
the biopsy may of SEEDED! ANYBODY HAD THIS ?
I need to have scan for this to be confirmed. Booked for this week.
Strange though as my lymphodema has gone down and my leg is normal skinny chicken leg. The fluid is still coming out and I'm having it dressed daily and resting up.
Any body got experience of this ?
ORIGINAL POST BELOW
I posted my journey previously. Last Post was when I was awaiting APER surgery last Oct 23.
Major surgery was done with full hysterectomy and stoma (martha) fitted Oct 23.
Given all clear from history. But before the 4 months mri I could feel a lump in my groin. Emailed oncologist who requested early scans.
It's back again, now in lymph nodes in groinand incurable.
I'm receiving chemo for 6 cycles and I've completed 3 so far. To try and contain and shrink.
Considering I started out with less than stage 1 and 95% curable, had chemo radiotherapy then reoccurrence. APER then reoccurrence both within months.
Anybody else in same situation?
I'm thinking to get another opinion privately, anybody else done this ?
Hi
Wow I really have felt like I'm alone with this. Your the 1st person on all the groups I'm on with very similar story.
I don't think my oncologist has had patient with this either. He told me yesterday that due to the extension treatment already on my pelvis then it would be too dangerous to do further surgery.
I'm hoping my plaxo and carbo chemo is working, I will await scan end Aug. I too don't think they know what to say anymore.
I feel that in the beginning of my diagnosis they were sure they could cure it, I was not treated seriously enough. Now I'm getting all the support I should of been having from the start!
Have you had 2nd opinion and where are you being treated. If you don't mind me asking.
I'll be thinking of you and keeping my fingers crossed for you. Please update you journey on here.
Jinnie x
Hello Jinnie
I hope that you were discharged in time for your CT scan and that you didn't pick anything up from being put in a bay - I can only think they were very short of beds to take such risks with you. I will be keeping everything crossed that your scans show good results.
I saw your update and then it disappeared - if you amended your original post maybe it doesn't show up on newsfeed? It might be a good idea to do a new post each time, I know I am not the only one thinking about you and others will want to know too.
Big hug, Jinnie
Irene xxx
Hi Jinnie sorry to hear things aren't going well hope the scanshows some improvement it must be really hard as you were originally stage 1 but remember they vanstill treat you and hopefully this is a setback but after your scanresults they van continue treatment we are all routing for you and each other keep posting and sending love and hugs stay positive xx
Hi Jinnie you must be feeling really low but hopefully when you get your scan results they can still treat you as it is treatable I went from we can cure you to we can treat you
You have to remain positive ad there are others on this forum who are treatable Sending love and hugs and keep us posted as we are all routing for you xx
Hi Irene
The hospital actually did the scan before they discharged me. Which was a great help. They sent the results straight to my oncologist who rang me the following day.
Not good news, the cancer has been spreading and growing whilst I been on chemo. Chemo Stopped
Next plan. Option 1 to restart another chemo.
Option 2 go onto a clinical trial called Target. Where the take bloods and look at mutated genes in cancer. This gets done in Germany. Then they look for treatments in whole UK to match my cancer.
Lots more to it I know but I've started this Trial. As I think my cancer has not responded to any of " standard" treatments x 3 they given me so far. So let's go for it!
It's a waiting game again, but it's always is on this journey.
I wasn't aware about the post disappeared. I'll do new post each time I have update.
Thank you so much for your support x
Hi weekend walker
I'm struggling, it's been extremely hard couple weeks with the cancer breaking through the groin and bursting, I have a wound and terrific nerve pain all done my leg, with lymphodema. I can just about weight bear on it.
Now under St David's nurses who are managing new pain meds. These can only be increased slowly a week at time.
I'm still in the treatable stage, although after 3 "standard treatments" Ive opted now for a clinical trial. I've just posted about it on next thread.
Thank you for your support xx
Hi Jinnie,
So so Sorry ! I don’t think I’ve replied to your message . (Am out of my head).
I’m treated in Paris and I had several « second opinion » from the best cancer hospitals and institutes here…All the same. After radio-chemo failed -> APR, wich also failed so -> DCFm, failed, then -> carbo-Paclitaxol…I’ve just finished the 3rd cycle. PETscan planned in 10 days. I’m not very optimistic, I can FEEL the tumor, I recognize the pain now.
I am incredulous as you must be. I have spoken with a lot of people at more advanced initial stages who have been in remission since the first treatment (radio-chemo). When it doesn't want to, it doesn't want to! I think there is something in us (who were at an early stage but are insensitive to conventional treatments) that oncologists can't stand. It's crazy to be at this point for a fucking small isolated tumor "easily" cured at the early stage...
I read that your scan was not good️and that you had stopped carbo-paclitaxol and that you were entering a clinical study, "Target" you say?
I’ve been searching but I only found this:
« TARGET: A Study to Evaluate the Treatment of Patients With Acute Decompensated Heart Failure (ADHF) Using an Automated Fluid Management System »…
It’s not the trial you are entering I’m sure. How can I find it ?
Anyway, in our case, I now trust more in trials that in the conventional treatment our oncologists have, as it’s obvious that from a reason I (and they!) don’t know, something in our bodies is causing these treatments to fail.
You have gone through all these devastating treatments like me, and we are forced to continue this journey. Even if I don't answer very quickly, you are in my thoughts! And I can still be reached whenever you want (I don't know well this forum, maybe private messages are possible?).
I am devastated to read about your pain and I hope that in the coming days the nurses will arrive at a dosage that makes them bearable.
And I hope that finally this trial will allow to set up a treatment adapted to your tumor cells, or at least to know them better to better target them
I hug you tight.
I am here.
xoxo ️️
Hi Jinnie so sorry the chemo didn't work hope the trial goes ahead a.d is successful I really do as I'm waiting to see if my chemo has worked and am interested in further treatments fingers crossed they go ahead with your trial
Keep us all posted as we're with you a.d routing for you sending lots of positivity and love xx
Jinnie
I am glad that they have found a trial for you and I really do hope that this shows some better results for you. I am sorry you have had such a painful few weeks and if your pain meds are tweaked hopefully you will be more comfortable.
Thinking about you Jinnie, please let me know how things go.
Irene xx
Hi Jinnie,
do you feel any better ? Do you have painkillers ?
How’s the trial going ? (I didn’t find it on internet with the name « Target »…)
I just had my PET scan today after 3 cycles. Carbo Paxo chemo doesn’t work. Tumor didn’t shrank at all. Can’t tell you how exhausted I am, after 2 years of heavy treatments with such poor results but my life completely f..cked up.
I’ll see my oncologist tomorrow…
thinking of you
x️xx
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