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Yesterday was a bad day!

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

It is almost 5am here and it has been a sleepless night so far. I had started on Votrient a couple of weeks ago, 800mg. I developed severe pain in the liver and nausea to the point I could not eat. I stopped taking it a couple if days ago in the hope that my new Oncologist would agree to make some changes. The previous Oncologist had been insistant that I remain on the high dose regardless.

The update is that at  long last I was transferred to the Cancer Centre in Rennes, I am now under the care of a Kidney Cancer Oncologist. A few months back I was advised they didn't exist, which was why I was under a regular Oncologist. Anyway! she has gone through my scans with a fine tooth comb. I had my first appointment with her yesterday and she brought up my January scan, which supposedly showed that I had a tumour in each lung, and on and around the kidney. Well they say be careful what you ask for, which for me was someone with 20/20 vision, and she certainly fitted the bill. I have over 20 tumours, many of which are in my lungs, I have five in my right and nine in my left.

My initial diagnosis was stage 1b grade 3, I was advised it was not a very agresssive type. This Oncologist advises me that it was very agressive, hence the rapid spread. She was very surprised that after discovering the cancer had spread back in December, I has not had a brain and bone scan. I had repeatedly asked for them!  So that is the next thing on the agenda, I just hope to God they at least come up clean. So all in all things are not looking too good! I have at least had the Votrient reduced to 400mg, with a view to increasing it slowly. I am also going to have a two weekly blood check, which was not mentioned, along with so many other things, by the previous Oncologist.

So I don't know if this is too little too late, or if the Votrient can still stem the flow. I certainly hope so as some good news is long overdue;(

Djinnie

DSFrey's picture
DSFrey
Posts: 57
Joined: Jan 2014

Well it seems your new team is more competent so that's a good start! Good luck!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

DJ.. oh my... sorry for the bad news...  But yes Votrient can indeed slay the dragons inside you..!  I have like 20 lung Mets as well.  Plus I had a largish Met on my Adrenal Gland..  Votrient eliminated the Adrenal Met... it has been gone for about 8 months now...  All the lung Mets shrunk.  But Votrient can be hard on the Liver.. you should be getting blood tests about every month.  400 MG is still enough to do the deed... 600 would be better if you could tolerate it.   Also glad you finally got to a proper doctor...!!  This should make a big difference, especially now that you know the real story...  Hang in there.. holler at us, as needed...

Ron

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Ronnie, 

Thanks for the info about your experience that makes me hopeful! I would be so happy for it to reduce the larger tumour in the lung as quickly as possible. The constant coughing is driving us all nuts, it certainly keeps any conversations short and to the point. I am starting on the 400mg tonight with fingers crossed, I have to travel to Rennes every fortnight for bloodwork, it's a bit of a drive but so worth it.

The new Oncologists name translates to 'The War' in English, very fitting I think!

Djinnie x

Srashedb
Posts: 200
Joined: Dec 2013

Djinnie:

i am so sorry to hear your news but very glad you are now under the care of an expert.

from what I have read, the grades are 1-4 with the aggressiveness rising respectively. But, now you know and now you will get good treatment and as others have said, good treatment has produced great results.

you are in my thoughts and prayers as are your healers

Sarah

icemantoo's picture
icemantoo
Posts: 1595
Joined: Jan 2010

Djinnie,

 

Lets hope the rcc oncologist is talking about 20 nodes rather than 20 tumors. I suspect he was speaking in French which is greek to me. It is not uncommon that many of us have nodes in our lungs and many of them are not likely to be cancerous. Lets hope that we are not talking about 20 tumors and even if we were they are being shrunk by the votrient.  If I am wrong at leat I tried to send over good karma.

 

Icemantoo

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Ice, 

Thanks for the Karmic gift, I was fortunate in that she speaks English, so no language barrier. She didn't count the small nodules, the tumours range from just under 2 cm up to 5.5cm which is the one causing the constant coughing. Anyway! I couldn't listen after she reached 20 my mind shut down and I was away with the fairies, lucky my husband hadn't zoned out as well!

Djinnie x

I am alive
Posts: 224
Joined: Jul 2012

Djinnie. Thank goodness you've reeled in an actual kidney cancer oncologist. <they didnt make it easy to find her, did they? Though her initial take on things is sobering you at least can feel confident moving forward. And that's  worth a lot. I hope you catch a big break in the coming weeks.

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Thank you all for taking the trouble to post, I appreciate it:)

Djinnie x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yes, DJ, I have about 20 small "spots" in my lungs as well.  They mostly look at the larger ones, as they are easier to track.  My small Mets are in the 2MM or less size so it is difficult to track them being so small.  My largest was about 9 CM, and it is now below 7 CM. That is pretty good for being 90 days on Inlyta.  If Votrient works for you, I suspect you will be in a much better frame of mind, once you hear of the news.  It just MUST work for you..!! sigh...  

I like your new Doctor's name... hope that "WAR" person fights with you..!!! 

We finally got a little rain yesterday... we need the rain..!

Ron

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Yes, bad news sucks! 

Ficus on the good news:

1)you are actively treating the issue

2) you have a new and apparently competent doctor

3)you are a fighter 

4) You now know what to fight!

You no longer have to fight the unknown. And there is no need to wasteroid time wondering about what is making you feel bad. Focus in feeling better and picture breathing out the disease With every breath. That is what shrinking a tumors really comes down to....

An old boss of mine had a saying "you eat an elephant one bite at a time." Start taking bites and you will finish it off before you know.

Goid carma coming to you from NC!

 

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

So glad you found someone with the right knowledge. Great start. It is going to make a difference. Keep in mind that I also went from nothing to over 20 tumors. I know that feeling.Too scarey. Now you will be properly cared for. The right doc is so important. She will figure this out. I'm going to spin this and keep the positive aspect out front. You kind of fell in the mud but knowing you, you will get back up and not even look dirty. Your new doc will stabilize you then attack. You will handle it. You are as tough as they come.

I don't intend to make this sound like a pep talk. It is an observation of an amazing woman. You.

APny's picture
APny
Posts: 216
Joined: Mar 2014

I am so sorry you are going through this. I also think the name of your doctor is a very good sign. Sending you prayers and positive thoughts.

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Apny, 

Thanks for you kind thoughts, I appreciate it:)

Djinnie x

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Fox, 

Thanks so much for that Fox! It has taken me a little while but I feel I am in safer hands now. I have not felt very strong over the past couple of days, and admit to having a few teary nights. It is really scary but I know crying is not going to be effective. I have watched how you have come through the worst imaginable experiences, I know that the mind set is all important. I have to try and set mine on cruise control, no matter what, I am determined to get my life back on the right track.

Djinnie x

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Darron, 

Thanks for the sound advice, I like the elephant analogy. I know there is no point wistfully looking back I just have to keep my mind on the goal.

I will make it I am part of a good team!

 

Djinnie x

Jojo61's picture
Jojo61
Posts: 410
Joined: Oct 2013

Hi Djinnie - thanks for keeping us posted.

Those tumors are speedy, aren't they? But it sounds like FINALLY you got the right doctor. Now focus on getting better. I have a good feeling about all of this.

Dr. LaGuerre (is my guess close on the name?) will get you through this with flying colors!

Take care - you are in my thoughts and prayers

Hugs

Jojo

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hey Jojo, 

Spot on! Isn't that a great name for a doctor, and we are fighting on the same side! I hope you have a good sixth sense, lol! The tumours are growing quickly but the larger ones started to appear last September, she showed me where they had not been picked up before. I didn't get into the issues I had with my scans and the lack of care, bearing in mind Lorient shipped me back once we mentioned it. I don't want to risk my relationship with this doctor! She's not daft she must be acutely aware of it anyway. So I am am not wasting energy on past mishaps, I need it to move forward. I can only fight one battle at a time! So for me this has to be viewed as a new beginning!

 

Djinnie x

 

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi djinnie,

I will echo all the sentiments on this thread.  It's all been said before.  You know I am one of your biggest cheerleaders...and you have a LOT of us!  Tons of people pulling for you and praying for, not only you but your new Dr(s) as well.

I think you are smart to not dwell on past mishaps.  Moving forward is your only option and you must do so with all the gumption you can muster.  Having teary nights makes you normal.  It's OK to be scared.  But, the more energy you use worrying about what might happen, the less energy you will have to deal with what is happening. 

You've had a lot of negatives turn positive with the change of medical care.  I think we can only expect the very same of your health.  I'm not referring to the many tumors as a positive, of course, but just the fact that they have been identified and diagnosed and can now be treated...there enlies the postive in an otherwise negative situation. 

Stay strong, my friend.  I think about you daily.

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

Hang in there D. Sending good will your way.

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

Sending Prayers ...It sounds like you found a good doctor, which is really good.

cjhawk38's picture
cjhawk38
Posts: 42
Joined: Dec 2013

Hoping that now you found a doctor that knows what they are doing the bad days will be a thing of the past.  

 

Sending prayers!

 

Stupid, stupid cancer go away and stay away!

 

Cindy

danbren2's picture
danbren2
Posts: 193
Joined: May 2013

Dinnie,

     So sorry about your crying Djinnie, but just remember we are all there with you and supporting you with all of our might.  I am so happy that you have a good Kidney Cancer Oncologis that will do nothing but help you in this awful fight of this uncaring cancer!  I think you are one of the strongest women I have ever had the pleasure of meeting, and I do believe you will be getting much better!

     Wishing only good scans for you from hear on out!

                                                                            Love and always prayers of good health!

                                                                             Brenda

Jojo61's picture
Jojo61
Posts: 410
Joined: Oct 2013

Don't focus on the past errors. Move forward with Dr. LeGeurre and use your energy for good. Focusing on what could have/should have been is just a waste of your good energy. You are an amazing and strong woman. Your strength, along with your new doctor, your friend's and family's support and some good ol' votrient and you will be able to conquer this!

Keep that good energy, Djinnie - it's a great weapon against those nasty tumours!

Big hugs,

Jojo

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hey, thank you all so much for all of those supportive comments, very much appreciated. This all still seems very surreal, my mind hasn't quite caught up with the latest news. I am going up the hospital tomorrow to book my bone and brain scan, not really cherishing the idea! 

Djinnie x

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Djinnie,

 

Any conversation on a possible complete nephrectomy at  the site of the recurring kidney growth? Your post prompted me and John to think back to the time of his initial diagnosis. At that time, he was shown the ct scan that reflected his kidney tumor and numerous lung *tumors/mets/nodules/growths *. (*His doctors at the time used the terms interchangeably and loosely.) And one of John’s symptoms at diagnosis was a terrible cough, almost like a whooping cough.

 

But the first order of business according to his primary doctor; urological surgeon; and oncologist was to remove his kidney. They all agreed that removing the “root of the problem” was of utmost importance. And strange thing is--after his nephrectomy-- the cough disappeared. We had all but forgotten about that until you posted about your cough. We thought it might be worth a mention.

 

 

Sorry about the diagnosis, but don’t think it’s coincidence that your doctor’s name means WAR. Believe it means  the WAR has just begun and  we’re betting you’ll be on the winning side. So pleased you’ll now be working with a doctor you trust and respect. Know we’re pulling from you on this side of the Ocean!

 

Djinnie's picture
Djinnie
Posts: 814
Joined: Apr 2013

Hi Alice,

Thanks for the post! My cough is just like whooping cough, it is unrelenting. Talking is difficult because it is the main trigger to the spasm. The first Oncologist talked about a lung removal but no one has really said much about the reoccurrence on the kidney. What you say about removing the kidney makes a lot of sense, with it being the source of all ills. I really appreciate you passing on the information, I will call Dr War and arrange an appointment to discuss it. She is very experienced in kidney cancer, only without the attatched ego, and very open to input. I am pleased to have found her, with the last group treatment was like trying to pin the tail on the donkey.

Many thanks to you and John:)

 

Djinnie x

brea588
Posts: 116
Joined: Jul 2012

Djinnie im so sorry, for all that u r going through.  I just seen this post or I would have sent you a little message trying to encourage you and let you know I am praying for you and for healing of your tumors.  I pray the votrient works with great power to knock those nodules out and you breathe easier and stop the coughing.  Thinking of you and sending you  a big hug.    Sue

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