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One major battle ahead!!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi There, 

I have been having a pretty crappy time since my last post. I had been suffering incessant coughing so my GP sent me for an X-ray which showed a tumour in the left lung. I had been awaiting a full body scan at that time, so this was rushed forward. I then went back to see the Oncologist to discover that not only do I have the original three tumours outside the kidney, and cancer in the lymph, but a new tumour on the kidney and tumours in both lungs. The one in my left lung is almost 5 cm, I have had six scans in the past year and unless these tumours appeared magically, I can only assume they were wearing camouflage jackets. The larger tumour is pressing against my airway, no wonder I sound like I am smoking 60 a day. The cough is pretty constant and unbearable and I can't speak without choking.

I am now starting on Votrient, today in fact. My Oncologist had left me with the comforting words "that if this doesn't work, we can remove your left lung and your right kidney", Oh!so that's alright then!!!. What a huge change in less than a year. I started out with a small tumour, removed fully encapsulated with expectation of a pretty clear outlook for the future. I am extremely pissed off, just as well I can't speak or the air would be more than blue!  I can only say that should I need a lung and kidney removal in the near future I am calling in my plumber Jean-Marc, he couldn't possibly do a worse job!

According to a Bloomburg Study dated 2013, France, Ireland and Iceland are at the top of the list for Health Efficiency, France is supposed to have the best cancer survival rates in Europe! I wish someone had asked for my input on that one!

My husband has advised the local health authority that he is looking to take action for their incompetence. Unfortunately that caused Lorient to drop me like a hot potato. I have been shipped back to Vannes, but I refuse to go so my GP is trying to get me transferred to Rennes, so fingers crossed. They have a major cancer center there, with doctors who hopefully have 20/20 vision and more than one brain cell between them!

An unimpressed

Djinnie

 

cubsfan9
Posts: 43
Joined: Oct 2013

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

APny's picture
APny
Posts: 140
Joined: Mar 2014

Djinnie, I'm new here but I've followed your posts and I'm so sorry you have this to deal with. Wishing you all the best!

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

I have been thinking a lot about you, girl! What a crappy hand you have been dealt. And yet the great attitude and feistiness are still there! That will get you through this! I am sure the votrient will be effective. And I pray you will finally get the best medical care.We are cheering for you! Show RCC who is boss!

Big Hugs,

Jojo

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Dj,

You have been kicking ass 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

GSRon's picture
GSRon
Posts: 1155
Joined: Jan 2013

Oh my Dear DJ..!  I ad posted a "wanted" thread about you the other day... I was concerned, and my instincts were sadly correct.  But hope that Votrient does the trick for you... I do not see that you had taken any other drug so far..?  If so, then there is a bunch of drugs, in case the Votrient does not work.  We are all hoping for you... you KNOW that...!  Hang in there.. put on the boxing gloves.. holler at us if we can be of help...

Ron

angec's picture
angec
Posts: 621
Joined: Mar 2012

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! :)

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

for you to come back to the states DJ. I hope you have your citizenship...or maybe not. You may get better treatment here without insurance too. There is no doubt you are tough. Just need a good plan in place.  Karma.

cjhawk38's picture
cjhawk38
Posts: 30
Joined: Dec 2013

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's picture
Djinnie
Posts: 769
Joined: Apr 2013

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

 

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

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.

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

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 dumbass 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's picture
Djinnie
Posts: 769
Joined: Apr 2013

Oh! Twinnie I am certainly blessed to have you as my cheerleader, you excel at it. I know the results were a right shocker I can tell you! I have always had bloodwork with my scans, so it is more than weird, but then I have had the Keystone Cops on my case.

One of the side effects of this drug is swelling and soreness of hands and feet. Hopefully this cream works well if I should have that issue. The only problem I am having from the meds at them moment is digestive, so I will have to get on top of that. I also have anemia which has caused a huge loss of energy, but have just had blood levels for iron and vitamins checked so that should be addressed soon. I might have the energy to cough then. It's ironic in a way, I watched my Dad die from lung cancer. I used to smoke then, it scared me so much I promptly gave up the cigs. I thought if nothing else by taking care of my lungs there will be no chance of me going the same way. I didn't have a clue how sneaky this disease could be.

There is no doubt it's a bum deal, but I really can't do anything else but keep putting one foot in front of the other, and try to keep positive. 

Thanks for your prayers:)

 

Djinnie xx

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

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

a_oaklee
Posts: 148
Joined: Nov 2013

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's picture
Djinnie
Posts: 769
Joined: Apr 2013

a_oaklee, 

Thank you! I am grateful for your good wishes. I appreciate the heads up about the nausea. I have started taking the meds in the morning, I think I'll take a leaf out of your husband's book and change to a night dose. Fingers crossed for good results and minor side effects.

 

Djinnie x

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Thanks Diana, much appreciated! How is everything going with you, well I hope:)

 

Djinnie x

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

Hi Djinnie

I saw your post a few days ago and have taken my time in adding a comment. So sorry to hear your news but glad that you have commenced treatment. I hope Votrient helps you more than it did me. Although Votrient failed for me the side effects were minimal - no hand and foot syndrome, occassional diarhea, white hair, hypertension which was controlled.

just wanted to add my good wishes and hope your medical treatment and investigations are handled a lot better than in the past.

Sue xx

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

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

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

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

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

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

 

 

 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Sue, I am glad to hear you are doing well! It's funny you should mention Christie, I phoned them along with The Royal Marsdon to get second opinions, also to ask about the possibly of going back for treatment. I haven't quite ruled that out yet. They are both very good cancer treatment centres. Its a pity I no longer live in the UK you could have stayed with me.

I can imagine you have a lot to deal with in taking care of your Mother right now though. I looked after my Mum for 12years, she had dementia and then sadly cancer. It was very difficult, fortunately I lived in a tiny village where we all new each other. My Mum used to go walk about on a regular basis, I was always getting phone calls to come and get her. I am sure she only did it for the free cup of tea and biscuits. Everyone loved her though!

I hope your scan goes well next month, I will be thinking of you:)

 

Djinnie x

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

What's going on with these postings? Totally askew!

danbren2's picture
danbren2
Posts: 171
Joined: May 2013

Djinnie,

     I don't know what to say, but to remind you that you have always been a great inspiriation to me and always there to make things look brighter.  You are in for a fight, but I have no doubt you will be able to win this! I have lost a Kidney, lower portion of right lung, and plucked a piece out of my brain, if I can deal with that, I know you will be just fine, cause your words of wisdom and encouragement got me through all of those surgeries! We will always be here for you and I will put in extra prayers for you and the Doctors!

                                                            Love and lots of prayers for your good health!!

                                                             Brenda

Jan4you's picture
Jan4you
Posts: 182
Joined: Oct 2013

Oh dear, I too have wondered how you are doing!

 

 

{{{  HUGS  }}}

 

Yes, this sucks!! Geez louize! Now have you gotten a 2nd opinion from the surgery happy oncologist? There must be other things to do. But coughing must be so annoying. Can you eat and sleep ok? Oh how I FEEL for you!

I can provide you with my email address if you DM me. I have nothing but time and love to offer with an abundance of HOPE!!!!!

Thank you for coming here and letting us know. We're here for you and will walk along side you on this journey no matter what ok hon?

Warmly, Jan

 

 

 

donna_lee's picture
donna_lee
Posts: 390
Joined: Feb 2009

What can I say, but I'm so sorry to hear your crappy news.

Love your reference to one brain cell, and the revenge and poison pen letters about medical care. When it makes you feel better to vent, YOU GO GIRL!  We'll be here to listen.

I'm in your corner sending thoughts your direction.  Hope the Votrient has results, soon.

Love ya...

Donna

 

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

My thoughts are with you D.

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