second round of chemo day 1

From wigs to water - a forum to discuss anything concerning chemotherapy treatments - tips, questions, advice, experiences, etc

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Re: second round of chemo day 1

Postby lottie13 » Mon Sep 06, 2010 9:04 am

I;ve kept this under this heading as i think is may be easier for folks to follow
chemo round 3
after round 2 husband was given a presrciption by the onco for a blood test thurs before next chemo, to be done by 'district nurse' at home.
She duly arrived, took one look at the prescription and said 'ooh la la' CGA blood tests can ONLY be done at a lab.Luckily she rang the lab and husband had to drive hilmself there as I was out ! ok only a small thing but when you are ill it becomes a big deal!

husband went for round 3 last week, he saw the onco who has still not replied to his questions in his email.
he did say that he was going to order an MRI scan to see what progress was being made.
had chemo and we arrived home to find the appointment for the MRI scan with iodine contrast had been made by the onco!
Is this significant, well yes, in 2009 hubby had an anyphylactic shock and nearly died during this procedure.He carries a card and in his notes and on all his correspondence it is highlighted in yellow. If I hadn't been here for any reason, hubby would have turned up and had the scan as he doesnt read french.

So, I went to his notes to find the letter explaining his allergy, thought that would be easiest way, to fax to mri dept.
Whilst looking for it I came across a copy of a previous scan aug 2007, which was done 1 year after hubbys first cancer surgery.
To explain this was recently given in a bundle of copies which we demanded as we had not seen them, somehow this one had been attached as page 2 to a laterscan.
It was addressed to our previous med traitant and says that there was a new small growth which could be a tumour and that my husband should have a colonoscopy!!!!
We have never been told this by anyone and the gp had said to us that all was well!!! he speaks fluent english. and so no colonoscopy ever took place.
I am shattered, I dont know who to turn to.
My husband said that whatever time he has left he doesnt want to waste it fighting doctors. But it can't be left like this, it is at best careless and at worst gross negligence and we have lost 3 years where treatment could have been more effective.

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Re: second round of chemo day 1

Postby pennycsf » Mon Sep 06, 2010 10:12 am

Hi Lottie
What an awful shock! Would it be possible to get an appointment urgently with your medecin traitant, she seems very conscientious and helpful, and take all this to her? Has she read all the previous notes? Maybe there is a reason why the colonoscopy was not done? Either way, you should be able to make progress through her.

I can see that your husband does not want to spend his time battling the system and making complaints, but he does need to get proper treatment. CSF would be able to help with making complaints when the time comes to do that.

Keep battling, Lottie, you have been doing so well. :)

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Re: second round of chemo day 1

Postby csfmoneybags » Tue Sep 07, 2010 7:44 am


I agree with Penny - a nasty shock for you both, but do follow this up with your médecin traitant. CSF is always here to help you.


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Re: second round of chemo day 1

Postby lottie13 » Tue Sep 07, 2010 11:27 pm

medecin traitant came round today and listened while i went through all the problems, she was horrified that the colonoscopy was not done and said that we have lost 3 years. She has advised me to keep all our copies safe and no t to part with any of them.
she rang the scanner dept and cancelled the iodine scan and made an appointment for a different one. she then tore up the oncologists scan request and wrote a new prescription for a complete and thorough scan and named each separate area she wants covered. she has asked for the results to be sent to her.
she has also added a whole range of blood tests on top of the usual ones pre chemo. she was clearly shaken and it was an emotional hour.
my husband is stunned, scared, tired from the chemo and cant really take it all in. he seems to be blaming me somehow, but i know it is just the pressure, there is enough to cope with without all this extra crap.
she said that we will have a meeting after the scan and blood tests and decide what to do next. we wait and see, the scan is on the 28th and it is going to be a difficult 3 weeks

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Re: second round of chemo day 1

Postby pennycsf » Wed Sep 08, 2010 5:45 pm

With such a horrendous story, thank goodness your doctor is on your side and has appreciated how serious the situation is. She sounds very positive and it must be a small relief to know that she is taking personal notice of what goes on.

Yes, it will be a hellish few weeks, but you will get through (as you have up to now) and we are all backing you in the awful battle that you and your husband are both fighting.

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Re: second round of chemo day 1

Postby lottie13 » Wed Sep 29, 2010 12:06 pm

i thought i would post this here, although it applies to chemo round 3
same old, onco didnt have time to talk much but said that he would arrange a scan so that we can see where we are.
He sent the appointment and it was for a scan with iodine!!! husband had an anaphylactic shock with and is never allowed and carries a card SURELY it must be in his dossier.
I had a look through our letters to find the one which said NEVER use ultravist, in casei was wrong, but no he cant have it.*
Whilst searching I found a copy of a letter with scan results 2007 some 10months after husb initial surgery, it had been sent only to med traitant and we were given a copy in abundle a few weeks ago.
It stated that he had a new growth in his coeliaque colon which could be tumoral and should have a colonoscopie, we were never told about this and in fact our med traitant never arranged the colonoscopie, also the scanner dept never chased it up
So we had our new gp round who was horrified! she said we have lost 3 years! she rang hospital and changed the scan, then added a list of things she wanted checking, also added to next blood test.
Husband spoke to oncologist after I had scanned him a copy of the above to him
His answer was that he would check his dossier and make sure scan was suitable, stable door and horse comes to mind.
he had the scan yesterday and was told no change, but that the onco will take detailed look, my husband is now feeling pretty low as he is taking it to mean that the two new large tumors have not shrunk which was the point of the whole exercise.
Again we will wait and see, our gp has called for copy of the results so hopefully we may have news soon.
In the meantime we are considering a second opinion but are unsure as to how to do this

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