Topic: What to expect?

Hi,
I'm new to the site - based in Dublin, Ireland. My dad was diagnosed with this terrible disease in May. We were immediately told that it was inoperable and given a horrific prognosis of 3 months without treatment and 11 months with treatment.

At the time of the diagnosis he had just started experiencing some side effects including weightloss, jaundice & itching. They started chemo almost immediately and is getting a combination of gemcitabine and cisplatin.  After two or three cycles they did a scan and both tumors had shrunken significantly - one by almost 50% and one by over 30%. The doctors were very pleased and ordered for the chemo to continue.

My dad is probably the most positive person in the entire world ...I accept I might be slightly biased... Since May he has never complained once - is doing everything he should be doing, has put back on the weight he lost and other than some fatigue has really had no side effects at all from the chemo, also has no effects from the CC since he started the chemo.

Neither my parents ask questions of the oncologist - he's not exactly the chatty type but he can keep his crappy bedside manner so long as his treatment plan continues to work. The thing is we have the next scan in late Oct and I'm not sure what to expect.  I have really had no experience of cancer before now - to me it would seem logical that the treatment continues so long as the tumors are continuing to shrink / not grow - is that correct?
Since his quality of life is so good I see no reason to stop at the end of October but is there a set number of cycles that is advisable or where do we go from here?

thanks for your help..
Alv

Re: What to expect?

Alv,

I'm 61 and was diagnosed July 09 with inoperable bile duct cancer.  I was given the "horrific prognosis" of 3 months -14 months with 12 as the average.  Well, I am now at almost 14 months and surprising my doctors with how well I feel - no pain, have gained back all the weight I lost during radiation and chemo last fall (plus more).  Needing more sleep is about all I require, but I do think I have chemo brain smile

I do have a stent which needs the normal maintenance and am presently taking chemo again.  It was a hard decision to make as I was feeling so well.  I decided to do chemo again to try to keep my original tumor from waking up and to keep other tumors from developing.  I'm not sure what they will suggest after this chemo is done.  Probably will depend on MRI results.

Just wanted to let you know the prognosis data those doctors give you is certainly not always true and I do think they are based on old data, since we are sort of a pioneer group with this.

Kathy

Re: What to expect?

Hello Alv:

My experience with chemotherapy is that the oncologist had to stop it after 3 1/2 months because my immune system was threatened by the chemicals, despite success at shrinking my tumor.  The red blood cells counts, white blood cell counts and platelet counts were low probably because the bone marrow where they are produced was incurring damage.  Meanwhile, they switched me to radiation, and tentatively plan to put me back on a more restricted chemotherapy regimen a little later, as my blood analysis improves.  Also they have to consider the likelihood of permanent side effects from the chemo versus the benefits of the chemo on shrinking the cancer.  Hope this helps.  God bless you and your dad.
-Tom

Re: What to expect?

Hi Alv
Welcome to this wonderful family of CC patients and care-givers.  You will find the members here so helpful at sharing information about their experience battling with CC.  I'm also from Dublin and I believe I'm the first "Paddy" to join - although I'm sorry for your dad, I'm pleased you found this site.

I wish to briefly share my experience with you as it may help. I'm 49 and last October I was diagnosed at St Vincents after having the same symtoms as your Dad.  Firstly, I had a stent inserted, then a whipples operation in December (which failed), chemo from Jan to April (gemzar/oxaliplatin), a second whipples in May, which was successful.  The tumour was removed, no sign of any mets and I got the all-clear in August.  I'm now cancer-free subject to regular check-ups.  Justin Geoghegan was my surgeon and David Fennelly my Oncologist - they were supported by a good medical team, headed by Oscar Treanor.  St Vincents specialise in this type of cancer.

Perhaps you would come back and tell us why surgery is not an option and where he is being treated.  A cancer diagnosis is quite frightening - but with this site you are among friends only too willing to help you.  You will also find my e-mail address under my profile if you need to contact me.

Your Dad is lucky to have you as his advocate.

Good luck

Gerry

Re: What to expect?

DEAR ALV, i WANT TO WISH YOU A HEARTY WELCOME TO OUR FABULOUS FAMILY.  It sounds like your dad is doing great but always remember you are entitled to other doctors opinions. Also try to read up as much as you can, even on our posts as knowledge is power and you are already a great advocate, knowledge will make you even stronger. Next remember that we are not born with expitation dates and always keep that in mind. Waiting for scans is the worst, it really is. No one ever knows what to expect so we send lots of prayers and good wishes for a good outcome. Your dad's attitude is half thebattle and I would say he is winning. Please keep us posted on his progress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What to expect?

Dear Alv,

Welcome to our CC family.  I have been visiting this forum since my Dad was diagnosed in April after he became Jaundiced in February.  He was also told 2-3 months with no treatment, guess what, he's still here and he hasn't received treatment yet!  Unfortunatley he keeps getting blocked stents which are making his bile level to high for Chemo, but apart from being jaundiced he feels well, has good appetite and his getting out and about like he did before his diagnosis.  The only time he loses weight is when he has to go in hospital and have stent changes.

Your Dad is doing well, try and focus on that and take one day at a time.  I know that can be hard as whilst I'm always positive in front of Mom and Dad, at times I'm a wreck at home.

My Dad is always positive, even when he's had setbacks, which have been quiet a few the last months, and I think this attitude helps so much in the fight.

Dad will be having Gem/Cis like your Dad and we were told it could be given for 6 months max before a break would have to be given.  In your Dads case it is already doing the job it is supposed to be and more.  We were told to hope it makes the tumor stay the same, a shrinkage would be a bonus!

Best wishes to you and your family

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".