Delayed chemo

Hi glad to see he is doing well we had a break  he had Carbaplatin premexted premb had a partial response then went onto maintenance cycle after 2nd scan found that the cancer was coming back so recommended a break before going onto to Doxcetacel and nintinimab he had during which time he developed back ache so had 3 months break finally had 1st chemo on 5th December but had an allergic reaction and had to be stopped he had a scan just before Xmas saw consultant in new year who said that it had progressed probably due to the break a small tumour on spine and one maybe on his liver had a another round of chemo but initially over 2 hours but had another reaction so then dosed him up with steroids and antihistamines over 4 hours which worked he had also a one-off radiotherapy on his spine but he has had such a withdrawal from the steroids he is wondering if it is worth continuing as consultant says it is only a one in five success rate as at the moment he is absolutely wiped out

Sorry to hear all that. My hubbys been fine all he was given was 4 rounds of carb/prem no reactions nothing. Weights normal no cough already had radiotherapy on hip/spine/brain all good ( or was on las scans in Nov) everything shrunk.

Then prem maintenance was due on bank hols so delayed by a few days all bloods perfect except this kidney thing, no probs with urine. Tried again today, kidney test dropped slightly but not enuf for chemo. So put on IV saline scan on bladder/kidneys & back next week to see if chemo can be started. If not they get a kidney doc & onco to plan what next.

So we'd booked to go away as hes normal, but obviously not & back to no idea what next. TBH absolutely fed up with it all as u cant plan life, cancer plans life. Just so shocked hes got this kidney thing wen nothing wrong, no pain aches coughs nothing. Just seems 1 step forward & 5 steps back, sick to death of seeing Marsden. I'm also in hos next week, but prob cant av what I need as no idea whats going on with him.

I think if treatment offered gonna make him sick, call it a day as its not living its walking on egg shells & hes been perfect for months, but again mentally hes up the wall with whats going on & my stress levels are, I've had enough. Its the constant waiting, one week, 2 weeks now 3 weeks. Then its scan time again, both just had enough of it all.

My husbands withdrawal from prednislone was ok. When had delayed immunotherapy reaction & got colitis he was on high dose pred & weaned off slowly, but no reactions. No reactions to chemo. Radiotherapy made him tired, but stopped pain.

Lung shrunk from 7cms to 5.4cm

Hip 28cms to 15 cms

Brain nothing showing

But that was Nov scans. Todays ultrasound on bladder & kidney I literally av no idea what they're looking for. But messaging now as I eant to know as doc said results back today, but again no one says anything.

I've said surely leaving treatments for so long increases chance of spread they seem to think not. Just sick of it all a year of hell..

Hi Tillyboo

Having chemo delayed due to results from blood tests etc is far more common than people imagine.  During my treatment (way back in 2011), two of my sessions (2nd & 3rd) were delayed because of low red and white blood cell counts. After my 3rd and 4th sessions I required blood transfusions,  Ahead of the 4th session and in discussion with the Consultant, the blood transfusion was pre-booked as we all knew it was going to be needed.

The delays did not have a detrimental impact on my outcomes.

So maybe something to think about is to discuss this with his cancer team to try to pre-empt this ahead of each cycle of treatment?

Kegsy x

I text the Marsden late last night & his scans on both bladder/kidney are normal which is good.

TBH its taken its toll on me as no respite from any of this & my body feels like its gonna give way on me. I'm waiting on my GP to ring as my BP as spiked & I had a nose bleed which lasted 4 hrs & lost quite a lot blood. But cannot get this head/neck pain to go, so guessing its linked.

I'm also due hospital major surgery & also another problem with my hands, which they thinks related to the brain as other tests are ok.

But I'm stuck as no back up for me, so T the minute my husbands looking & feeling better than me. But I dont have any support network to take the strain off me to allow myself to get better..

This all sounds very selfish on my part, as hes the one with cancer. But I'm just absolutely worn out with everything....apologies for the whinge!