Multiple Lung Spots- Please advise

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Multiple Lung Spots- Please advise

by BarryOz on Fri Dec 10, 2010 03:02 AM

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Hi there, so pleased I discovered this forum as I have just been told that the CT presents with extensive nodules in both lungs.All way under 1cm ..too small for PET or biopsy.My urologist states that a panel of radiologists agree this is ' suspicious' of RCC mets after removal of left kidney o 10cm tumor last Jan. The onc didnt have the scans but insisted that this is the case and I am to start on Sutent in the new year. She went on to say that I shouldnt hold out hope on this being effective beyond 7 cycles as the cancer will workout how to mutate and the Sutent will no longer be of benefit. From there I would progress to Afinitor ..but all up she states I cant be cured and these drugs will only hold off the inevitable! My wife and I left feeling devastated. All I wanted was some hope... and from what I read here, there is hope. I'm 53. very fit and healthy. Use plenty of supps and have a small barge load of natural cancer killers on the way to help the fight. However I feel angry with my prognosis, very frightened and want to get another opinion. Appreciate your thoughts here .

Barry in Oz

RE: Multiple Lung Spots- Please advise

by Walking_Jim on Fri Dec 10, 2010 04:43 AM

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Hi BarryOz

Sorry about your situation, but there is a lot of hope.  It is likely your have rcc mets to the lungs, but maybe not.  Five years ago I was diagnosed with rcc with mets to both lungs and to 4 bones.  At that time there were only 2 drugs (Sutent and Nexavar).  Like you I was a very healthy and active 59 year old.  I have had 3 surgeries, radiation to one bone, one year on Nexavar and have been on Sutent for the last 3 years and 8 months (far more then 7 cycles).  Today I was using a chain saw to make fire wood for next winter.

I stopped all supplements after my diagnosis as I did not want anything to interfer with the real drugs.  Also there are now at least 6 drugs approved for rcc.  Sutent is the first line treatment followed by votrient and the the second line treatments are torisel, affinitor, nexavar, and avastin.  The cure rate is very small, but the drugs extend life and maybe there will be a cure developed before it is too late.  You might want to contact another oncologist who specializes in rcc, but begin the Sutent asap.

Jim 

RE: Multiple Lung Spots- Please advise

by BarryOz on Fri Dec 10, 2010 05:57 AM

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Hi Jim,thankyou for your post... 5yrs is quite a success story, well done and just as I need to read right now. Convinced I need to source a specialist ...one you will take a personal interest. My Private Health cover takes over late Jan11 which may provide access to the right people. I have been doing many things suggested by my Naturopath since first dx and thought I had it covered. I am going to do a total detox first up with Zeolite and Amrit Kalash followed by Protocel or Entelev 23 which has many good references on various sites. Beyond that continuing with a veggie/fruit diet with plenty of alkalizing.Also I have almost stopped any alcohol consumption unless there is an occassion to do so. I feel I wish to hold off the Sutent and give my body a chance to detox and give the new products a try prior to Sutent which looks to have some nauseating side effects. Do you still get sick and did the Sutent lose its effectivemness after time?  Many thanks again - Barry                                                                   

RE: Multiple Lung Spots- Please advise

by tommyv91 on Fri Dec 10, 2010 09:56 AM

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Hi Barry,

First please “sack” the ONC an ONC with that attitude will not help you with the emotional support that is very important to your fight or for that matter medical decisions Please find an Onc that understands RCC she clearly dose not. I have been on Sutent for 26 cycles an surprise I am still here. I have visible “anomalies” in both lungs but they show no signs of growth. I also have 6 Hilar lymph nodes that have been biopsied and are consistent with RCC. They have shrunk over the last 3 months to the point that the thoracic surgeon believes that the can be safely removed using VATS which means no open chest sugary. That is a relief has I have already had 5 open chest procedures. Over the years I have had HD IL-2, Interferon, been part of a clinical study where they attempted to generate a vaccine from one of my tumors Sutent, Afinitor, Sutent. Good luck and keep on fighting and never believe the statistics. Any good bean counter or engineer can make the number come out they way the want them.

Bets of luck

Tom

RE: Multiple Lung Spots- Please advise

by markgiants on Fri Dec 10, 2010 09:19 PM

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Dear BarryOz, First of all you  MUST make sure that you are seeing a RCC Specialist. Most regular oncologists are not up on the latest drugs or treatments. I have 3 lung nodules , all of which are less than 1cm. I have seen 2 renowned kidney cancer specialists, one is at Sloan Kettering and he helped develop some of the current drugs available for RCC. He is NOT giving me any of the RCC drugs ( Sutent, Nexavar, Afinitor,etc.) available  because he says that they have NO effect  when the nodules are that small, thus it is a waste of time. Once my nodules grow to  1.5-2cm than I would be able to start the drugs. However, I am not waiting. The side effects of the drugs available are brutal. I don't want to go on  any of them if at all possible. I first spoke to  my thoracic surgeon and he mentioned that he could take out all of the nodules surgically, if I wanted. I than went to an Interventional radiologist and he mentioned that once the nodules grew to over 1cm he could either do Radiofrequency Ablation or Interventional Cryoablation both of which are non surgical. I am going to go for the latter. You are in and out of the hospital usually the same day, wheras with surgery you are in the hospital for approx. 5-7 days. I don't know how many nodules you have but if all posssible I would look into the above treatments.

Good luck.

Mark

RE: Multiple Lung Spots- Please advise

by BarryOz on Sat Dec 11, 2010 12:29 AM

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On Dec 10, 2010 9:19 PM markgiants wrote:

Dear BarryOz, First of all you  MUST make sure that you are seeing a RCC Specialist. Most regular oncologists are not up on the latest drugs or treatments. I have 3 lung nodules , all of which are less than 1cm. I have seen 2 renowned kidney cancer specialists, one is at Sloan Kettering and he helped develop some of the current drugs available for RCC. He is NOT giving me any of the RCC drugs ( Sutent, Nexavar, Afinitor,etc.) available  because he says that they have NO effect  when the nodules are that small, thus it is a waste of time. Once my nodules grow to  1.5-2cm than I would be able to start the drugs. However, I am not waiting. The side effects of the drugs available are brutal. I don't want to go on  any of them if at all possible. I first spoke to  my thoracic surgeon and he mentioned that he could take out all of the nodules surgically, if I wanted. I than went to an Interventional radiologist and he mentioned that once the nodules grew to over 1cm he could either do Radiofrequency Ablation or Interventional Cryoablation both of which are non surgical. I am going to go for the latter. You are in and out of the hospital usually the same day, wheras with surgery you are in the hospital for approx. 5-7 days. I don't know how many nodules you have but if all posssible I would look into the above treatments.

Good luck.

Mark

Thank you so much for your experiences. Now assured the Onc who laughed me out the door with the words ' dont worry too much it want kill you in a hurry' still echo in my head...is sacked. I guess I will pressure my Uro to finding a RCC Specialist. The radiogragphy report states that the nodules are tiny but extensive across both lungs. Where is the danger (a) the quantity of nodules or (b) the size they grow to?  thanks again Barry

RE: Multiple Lung Spots- Please advise

by BarryOz on Sat Dec 11, 2010 12:40 AM

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On Dec 10, 2010 9:56 AM tommyv91 wrote:

Hi Barry,

First please “sack” the ONC an ONC with that attitude will not help you with the emotional support that is very important to your fight or for that matter medical decisions Please find an Onc that understands RCC she clearly dose not. I have been on Sutent for 26 cycles an surprise I am still here. I have visible “anomalies” in both lungs but they show no signs of growth. I also have 6 Hilar lymph nodes that have been biopsied and are consistent with RCC. They have shrunk over the last 3 months to the point that the thoracic surgeon believes that the can be safely removed using VATS which means no open chest sugary. That is a relief has I have already had 5 open chest procedures. Over the years I have had HD IL-2, Interferon, been part of a clinical study where they attempted to generate a vaccine from one of my tumors Sutent, Afinitor, Sutent. Good luck and keep on fighting and never believe the statistics. Any good bean counter or engineer can make the number come out they way the want them.

Bets of luck

Tom

Thanks so much Tom for the valuable insights at this time. It feels as though I live on another planet and I look at all the well people about and envy the fact that they are carefree. As you say the 'onc' is sacked and will now try to source a RCC Specialist You have certainly endured much to master the beast. Comforting to read that your cycles have been sucessful.. I feel empowered by your words and know I will have to be strong physically and for my loved ones for whats ahead. Its strange- I just diid a 2km swim and felt fine after... yet my lungs have this disease. I will copy/paste your experiences and use them as a reference point.

Thanks again ...so much

 

RE: Multiple Lung Spots- Please advise

by itsmelissa on Sat Dec 11, 2010 01:05 AM

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I am sorry this is happening to you Barry.  Keep the faith, you can do this.  

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