One major battle ahead!!

Good Morning!

So sorry to hear that you are going through this.  How awful that you have to fight  not only the disease but the 'health care system' as well.  But, you ARE a fighter!!  We will be thinking of you and praying for you.  ~Sharon

Dear Dj,

You have been kicking **** and taking names for what, 10 plus years, I for one am very impressed! You are fighting mad, I would never bet against that spirit. You have spit in the eye of the beast more than most and lived to tell about it, this will be no different. Votrient has been a very good weapon and I pray it is all you will need, but there are other options and new ones in the works. KEEP THE FAITH!!! We're here for you, Godspeed.

Thoughts and prayers,

Gary

Sorry to hear about the new discovery, DJ! Were you not any any meds at all? Votrient can do alot to help take care of the mets.  What dose are you starting at?  Mom takes only 200 mgs and she takes it at night two hours after her dinner, and doesn't eat for an hour after she takes the med.  So no food for two hours before and wait at least an hour after you take the med.  I am praying it works and also that you find better doctors.  Do you make it a habit to get copies of each and every test done? Also, they can now put the entire scan on a cd so you can carry it with you to any doctor. That is what we do here in NY.  May God direct you in all you do!  Praying for you!  Let us know how you do on the Votrient. It has taken care of several mets in mom in both lungs, nodes and stomach.. So be positive!

So sorry to hear this.  Sending prayers, best wishes and lots of luck to find a doctor with more than half a brain to get you well again.

Cindy

Djinnie said:

Many Thanks!

Thank you all for your support, I needed it! I would love to come back to the US Fox but my green card is defunct. I like it here well enough just can't cope with the men in white coats.

Angec I do have copies of all my scans, we have to hire a truck to shift them. Unfortunately all the reports on my scans for last year showed no problems, when quite obviously there was a lot brewing. I am on 800mg of Votrient, which I believe is the maximum dose. I would definately have preferred to start lower then build up, so I hope my dosage is correct. My distrust is setting in there! I was also given a foot long tube of cream,for my hands and feet, there's enough to supply my whole village. It says to use for three weeks only, surely I am not going to need that much, I will be leaving paw prints everywhere!

I have been flirting with cancer for a long time, I have always been fortunate that it has never spread. It is making up for lost time now though. So for me this is the first time I have needed medication, hopefully this one is user friendly.

The doctors advised me that I am in this predicament because my last surgeon in Dallas, in 2003, did not deal with the cancer correctly. They tell me he should have removed the kidney and I would be fine now. Well that might have been credible if after the return of the cancer, the French surgeon had not also left the offending kidney in place. There's French logic for you!

Thanks again everyone:)

 

Djinnie x

 

DJinnie my thoughts and prayers are with you.  So sorry for all the trouble you are having with this tough disease, and the docs half way doing their jobs.  Hang in there and think positive, if you can.

CommuterMom said:

DJinnie,
I hope you pass this

DJinnie,

I hope you pass this hurdle soon and start feeling well and getting the treatment you need.

Sending thoughts and prayers for a positive outcome.

-Diana

Djinnie, I'm really sorry to hear about what you are going through right now.  I'm so impressed with your fight and determination.  Know that we all are thinking of you and wish the best for you.  My husband took Votrient and he started at the maximum dose like you are doing.  He had very few side effects.  Some nausea, which went away when he took the medication at night.  I think he slept through it.  At the time when he took the drug he still had the primary renal tumor and bone mets.  It worked wonderfully for the bone mets, but the primary renal tumor grew slightly.  Because of the slight growth of the renal tumor, he was switched to affinitior.  I continue to think it's quite strange that medicine can work for some tumor sites in a persons body, but perhaps not all sites, bit then again for some people it works on all the sites.  I will be praying for this drug to work well for you.  Many people have had great response.

Djinnie said:

Many Thanks!

Thank you all for your support, I needed it! I would love to come back to the US Fox but my green card is defunct. I like it here well enough just can't cope with the men in white coats.

Angec I do have copies of all my scans, we have to hire a truck to shift them. Unfortunately all the reports on my scans for last year showed no problems, when quite obviously there was a lot brewing. I am on 800mg of Votrient, which I believe is the maximum dose. I would definately have preferred to start lower then build up, so I hope my dosage is correct. My distrust is setting in there! I was also given a foot long tube of cream,for my hands and feet, there's enough to supply my whole village. It says to use for three weeks only, surely I am not going to need that much, I will be leaving paw prints everywhere!

I have been flirting with cancer for a long time, I have always been fortunate that it has never spread. It is making up for lost time now though. So for me this is the first time I have needed medication, hopefully this one is user friendly.

The doctors advised me that I am in this predicament because my last surgeon in Dallas, in 2003, did not deal with the cancer correctly. They tell me he should have removed the kidney and I would be fine now. Well that might have been credible if after the return of the cancer, the French surgeon had not also left the offending kidney in place. There's French logic for you!

Thanks again everyone:)

 

Djinnie x

 

Hi Djinnie,

This morning I thought I'd take a quick peak on here, knowing full well I didn't have time for it.   Immediately, I wished I hadn't.  Deadlines and long drawn out meetings prevented me from reaching out to you right away.  And, in fact, I found it nearly impossible to focus on the tasks at hand as, my mind kept wandering back to you.  I wanted to hunt you down and hug you.  I've been told I give THE best hugs.  And I do!

You have every right to be pissed, IMO.  I think most of us, as cancer patients/survivors are proactive in our healthcare doing all the scheduled scans at the scheduled time increments, with complete confidence that mets and/or new tumors will be caught early.  And if you weren't confident after the first scan you certainly would be by scans number 2,3,4,5 and six.  So yeah, I'd be pissed too.  How in the hell does this happen???  It is so disheartening and leaves me shaking my head in disbelief.

Regarding your meds, I think the highest dose of Votrient is what I would want given how fast the mets/tumors seemed to magically appear.  There are so many people with positive stories where Votrient has been a saving grace.  I imagine it will be the same for you.  There's no reason to think otherwise.  Having said that, I completely understand your mistrust of the dosing.  We get one life.  There are no do-overs.  Listen to your instincts and if you are in doubt, ask.   

I can't help but wonder, in all the times you've been in for scans, haven't you also periodically had bloodwork?  I would think there would be tell-tell signs in your lab.  I'm curious too about the hand and foot cream.  What's it for?  My mind's eye could just see you scuttling about your house, leaving paw prints behind.  You say the darndest things, always making me lol. 

I'll be thinking about you ALOT and will lift you (and those **** doctors) in prayer.  I think your new doctors will be on top of things and with their help, you will get thru this.  Your amazing spirit coupled with your impressive attitude and your ability to find humor in every situation, no matter how dire, assures me you're gonna be fine. 

xoxoxo

Sindy

Djinnie:  What everyone else has said goes for me as well.  Good thoughts and fervant prayers are all I can offer!

Djinnie said:

Side Effects!

Thanks Gordon and Sue! Sue I hope like you my side effects are minimal. I am just a few days in and already I am suffering pretty bad digestive issues. I am not blessed with the stongest digestive system at the best of time. I think bicarbonate of soda is going to become one of my closest companions.

I was reading all the cautions and side effects off the US web site yesterday. It states that there may be concerns over using this drug if you have suffered from stomach ulcers or fistulas. I mentioned to my Oncologist that early last year I had suffered from a fistula, his response was ' Not a problem '. I certainly hope not!

How are you doing now Sue?

 

Djinnie x

i am doing alright on Afinitor very few notiicable side effects. Initially had problems with low platelet count but now back to normal. Last blood test this week showed am slightly anaemic but not too much to be concerned about.

I have recently made an enquiry to the Christie in the UK about IL2 which is not available in Australia. Prof Hawkins responded within about an hour of my email to one of the secretaries which impressed me. Gave me a heads up on IL2 but did tell me it would mean up to 12 months in the UK which is not really an option at this point in time. I would need someone to be with me and with my daughter completing her final year of high school cannot rely on her and I think it would not be fair on a 17 year old. Couldn't rely on my mother either who is elderly and in the early stages of dementia.

anyway further scan on April 3 which I am hoping will not reveal any further nasties or growth in existing lesions.

Otherwise I have continued to feel and look really well that no one believes I am suffering from stage 4 cancer. I am convinced that the scans they show me are someone else's!!! (I wish).

take care

Sue