Yesterday was a bad day!

Djinnie
Djinnie Member Posts: 945
edited March 2014 in Kidney Cancer #1

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

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Comments

  • DSFrey
    DSFrey Member Posts: 69
    Best wishes

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

  • GSRon
    GSRon Member Posts: 1,303
    DSFrey said:

    Best wishes

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

    DJ.. oh my... sorry for the

    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

  • Srashedb
    Srashedb Member Posts: 482
    Sorry

    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
    icemantoo Member Posts: 3,360 Member
    Translation

    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

  • I am alive
    I am alive Member Posts: 315
    Hang in

    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
    Djinnie Member Posts: 945
    icemantoo said:

    Translation

    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

    Translation!

    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

  • Djinnie
    Djinnie Member Posts: 945
    GSRon said:

    DJ.. oh my... sorry for the

    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

    Hi Ronnie, 
    Thanks for the

    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

  • Djinnie
    Djinnie Member Posts: 945

    Hang in

    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.

    Thanks!

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

    Djinnie x

  • GSRon
    GSRon Member Posts: 1,303
    Djinnie said:

    Thanks!

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

    Djinnie x

    Yes, DJ, I have about 20

    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
    Darron Member Posts: 310
    Djinnie said:

    Thanks!

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

    Djinnie x

    Knowledge is power

    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
    foxhd Member Posts: 3,181
    Darron said:

    Knowledge is power

    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!

     

    Good news!

    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
    APny Member Posts: 1,995 Member
    foxhd said:

    Good news!

    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.

    I am so sorry you are going

    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.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Speedy

    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
    Djinnie Member Posts: 945
    Darron said:

    Knowledge is power

    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!

     

    Knowledge is Power!

    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

  • Djinnie
    Djinnie Member Posts: 945
    foxhd said:

    Good news!

    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.

    Good News!

    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
    Djinnie Member Posts: 945
    Jojo61 said:

    Speedy

    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

    Thanks Jojo!

    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

     

     

  • Djinnie
    Djinnie Member Posts: 945
    APny said:

    I am so sorry you are going

    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.

    Kind thoughts!

    Hi Apny, 

    Thanks for you kind thoughts, I appreciate it:)

    Djinnie x

  • cran1
    cran1 Member Posts: 139
    Hang in there D. Sending good

    Hang in there D. Sending good will your way.

  • CommuterMom
    CommuterMom Member Posts: 120
    Sending Prayers ...It shound

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

  • cjhawk38
    cjhawk38 Member Posts: 44
    Hoping you have more good days!

    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