Could I see the future?

Ok, an update.

i returned home yesterday from my third round of TIP chemo.  No lying here, 5 days in hospital on the drip constantly is horrible.  The side effects kick in while in hospital, it makes your whole body ache.  But just one more to complete now.

My blood tests show my tumour markers are within normal range, comfort my body is responding to the chemo.  this doesn’t really effect the 60% chance of this working. 

This sh1t is nasty enough that I can see how it could work.

2 weeks till round 4, then a scan I suspect early January to see the results.

everything crossed

Looking forward to January to celebrate with you the positive results of your chemo!

Boom, TIP completed.  I’ve been home 6 days now.  More nausea/sickness than I’ve experienced previously, and I required a blood transfusion due to low red blood count .

but it’s done.  Much fatigue being experienced, taste buds gone, but everyday from now on is a physical return to normality.  Anyone who has had the BEP/Vip/TIP or other regimes will know the joy of knowing you recovery won’t be set back by the next round.

my tumour markers are normal, I’ll now have a scan mid January, consultant appointment to follow. 

I’m now going look forward to the best Xmas we as a family can have.

dan

Well done Dan! 

Have a great Christmas after all you been through you really deserve it! 

Huni

Hi Dan,

I was just wondering how you doing? Did you have your scan this month? 

Hopefully it`s all clear for you! 

Regards,

    Huni

Update 16/01/19

since my last update I had to have another blood transfusion, mid December, as I was severely anemic.  The blood soon perked me up, only to be hit by a cold just before Xmas.  Cold and chemo recovery didn’t mix and found myself tired and sleeping in the day.  Early January and the cold cleared up, and I started to feel much better.....just in time for my CT scan.

fast forward 2 weeks, and yesterday we got the results....no sign of any tumours, all gone, “it’s absolutely clear”.  Bloods also normal.

The news is as good as it can be right now, but I am fully aware I’ve been at this stage before.

its half time and we’re a goal up, just need to keep a clean sheet in the second half.

on to monthly surveillance.  There’s a cold comfort when receiving treatment and awaiting results, which is that we can live in ignorance, with a set date when we will receive an update, so up to that date ignorance is better than bad news.  We now have at least another month until anyone can give us bad news!  Month to month.

Huni - your timing was perfect...only got the result yesterday.  Appreciate you remembering!

Sorry to hear that you needed to go trough anemia and cold but at the end i am extremely happy for your all clear! Really hope you will bring the second half down with a clean sheet! 

All the best! 

Huni

Update 19/03/19

Today we had our second surveillance meeting following on from the scan in January.

The first surveillance meeting was good news but not the best news.  My AFP marker had risen from 4 post chemo and at scan time to 6.  It's good news exclaimed the nurse, your bloods are normal.  Good news but not the best news.  I point out this happened before, your bloods are normal, take it and move on to next month I'm told.

My next appointment was to be 12th march, I can't do that date doctor its the first day of the Cheltenham festival,  you can move it back or forward 1 week I'm told.  

I opt to push it till after the festival, much to my wife's protestations.  I admit pushing it back a week appears counter intuitive, surely you want to know either way asap?  Wrong.  Cos when you know you know, when you don't know all outcomes are still possible.  

I enjoyed the festival, despite having my worst festival ever financially.  

Today was the next surveillance meeting.  My AFP has steadied at 6.  It's not trending upwards. 

I think I said previously that we were  up at half time and needed a cleans  sheet in the second half.  Last meeting felt like it had equalised.  Today feels like we took the lead again. We are a goal up again.

Sat at home drinking a Corona with the stones playing gimme shelter.  A little emotional.  I cried a little when the doctor said today "it's all good news".  Good times.

My thoughts to all out there who are on their journey through this.

Dan

Hi and Im sorry you have gone through ups and downs. My husband was diagnosed last year with pure seminona stage 1 and he did surveillance for one year and everything was clear until one week ago when a lymph node 2.4 cm showed it’s ugly face on his ct scan. That bumped him up to stage 2b. Now he needs BEPx3 or EPx4. He had his pulmonary function test done today, so we shall see. We worry about all this because it makes us wonder if we have a future ahead or if things will get better or just worse. Im glad you’re doing good. 

https://www.semanticscholar.org/paper/Variations-in-normal-serum-alpha-fetoprotein-(AFP)-Patel-Balise/cc9637a2fdb6ae35ddfcf24b71a527faf64713bc

The above is a link to a study that looked at post chemo AFP readings in 72 patients recovering from testicular cancer.

It gave me comfort that AFP readings can and do fluctuate in 93% of patients, and none of the patients in the study relapsed.

It might help others going through surveillance if their AFP starts moving around.