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johns son
Posts: 12
Joined: Jan 2014

   Hello to everyone on here. My Dad was diagnosed on June 25, 2013 with stage 4 RCC, on July 9 we has a appointment for treatment options.  To make a long story short, we got a apology tour , tort reform and apology letter. We did not meet with Doctors but with administration. They told us that his scans they did 2 years ago had him diagnosed with stage 4 Rcc,  with a prognosis of eight months. Well at this point looking at the scans, we thought he had a very slow growing cancer. The tumor on the kidney and the mets in the lungs grew very little. My dad is 64 and very active, he is a building contractor about 5'9"  185 lbs. At this point he did a lot of research and he bought a juicer and started Gerson Therapy, he said he was going to do it for 3 months and get new scans. This is wear the horror story begins. At this point around July 15, he has all of the equipment, the enemas, the organic food and juicer. Of course he is losing quite a bit of weight, which we thought was normal from the juicing, but everthing was going down hill in a hurry. Some time in October he fell down and hit his head, i rushed him to the emergency room. He has 4 brain mets or tumors and his lungs  more have showed up.They did 10 Days in a row of fullbrain radiation. Days 1-5 no side effects dys 6- Today have been horrible. The hair, taste buds, and salivia glands are burnt up. He eats very little. He was 132 lbs  today. The fatigue is extreme. Seems a little disoriented and lethagic.  We left the VA and flew to the Clevland Clinic, they put him on Sutent 37.5   2 Weeks on  1 week off. They got us a appointment at Moffit in Tampa, which isonly 2 hours away. They drained the fluid on his lungs, this made a huge difference in his breathing. He is on day number 8 of his second cycle, i can tell a huge difference in his breathing and his caughing is almost gone. He does have thrush in his mouth and sores. He does not want to eat , he is getting 5 boost plus a day and a bite of food every couple of hours.He has a bed sore, we got it treated today. He is fighting, but the fatigue is beyond belief. Any feed back would be greatly appreciated.   

twinthings's picture
twinthings
Posts: 387
Joined: Jun 2013

Johns son, I'm afraid I won't be of much help in providing feedback in terms of the treatments your dad is undergoing, as I have no experience with them.  But, you have certainly come to the right place and it's just a matter of time before those with knowlege chime in with support and maybe even advice. 

I just wanted to extend my well wishes and tell you how sorry I am to have met you this way.  I know what you are going through because I went through it with my dad, albeit colon cancer.  It is torture watching a parent be so sick and feeling so helpless.  Kudos to you for reaching out to others in effort to be a better caretaker! 

Wishing you both physical and emotional healing.  I hope you'll keep us posted!

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

Hi Johns Son,

I am so sorry you all have to go through this. This is sounds like everyone's worst nightmare. I also don't have much to offer you other than my thoughts and prayers.

My situation has been pretty straight forward. However I am sure someone on this forum will be able to advise or guide you.

Take care, John's Son.

Hugs,

Jojo

johns son
Posts: 12
Joined: Jan 2014

2014-01-04

johns son
Posts: 12
Joined: Jan 2014

He has not had his kidney removed, having it removed right now, I believe would not be a great idea. If the sutent works and he gets a lot stronger, i think he might be able to tolerate the surgery. He has a full body scan set for late January. I will keep everyone posted on the results. I'm glad I have found this place, reading all of these stories are amazing. I wish the best to each and every one of you.

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

Hi John, I am sorry to hear about your Dad! I can't believe that the hospital did not fully inform you of their prognosis 2years ago. Your Dad proved it to be wrong anyway, he seems to be in better hands now, and I am glad he is showing signs of improvement. Both my parents had cancer, my Father had agressive treatment and his mouth and lips were left sore and bleeding. It is hard to eat when you have thrush, are they offering some treatment for it? 

 

Djinnie x

johns son
Posts: 12
Joined: Jan 2014

Not sure of the medicines name, but i think it is a antifungal.  It seems to be working, clearing up the cottage cheese looking stuff. A quick question, every time eats or drinks, automatically he will be spitting up mucos (PRESUMES TO BE MUCOS). I was wondering if that was normal. Today is a good day for him.He was up drinking OJ, saying he can taste it a little, very strong so i deluted it with water, he drank a couple sips.It was nice to see him walk around a bit.  Does anyone no if Sutent will help shrink the brain mets or small tumors? Thanks for all of your input.

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

The yeast is probably very active in the oesophagus and very likely into the gut. It ferments and creates a foamy phlegm. I am so glad to hear your Dad is making some progress!

 

Djinnie x

johns son
Posts: 12
Joined: Jan 2014

At first, we were angry, but looking at the scans, we were very hopeful as it looked like the cancer was very slow growing. He went to the VA for a routine checkup and they detected blood in his urine. He showed no physical side effects. In his mind he lived 2 quality years without knowing he had cancer. No doctors , hospitals, medicines, surgeries. He figured he could go 3 more months on Gerson therapy, get the scans and hope the tumors would shrink. What has happened now, I wish we would have has his kidney removed and start on the Sutent while he was strong. Anyway your continued feedback, knowledge, really gives us great insight. Thank you all

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

Yes, Sutent will shrink tumors. Sutent caused thrush and metallic taste for me. The meds for thrush will clear it up in a few days.

The Max dose for Sutent is 50 mg, I assume they have him at 37.5 until he gains some strength.

I can't help too much with the other issues, but when Sutent works, it works very well. They should be doing blood tests every week or so at first to make sure it isn't messing up creatinine, platelets, liver function and such.

Sutent haa not shown to be a durable cure, but can shrink and hold tumors to a manageable size. Once they brain tumors shrink and alleviate the pressure, they may have a "next step" in mind??

hope that little bit if info helps.

johns son
Posts: 12
Joined: Jan 2014

It does help, every bit of info, we can gain is vital. Thanks Again

johns son
Posts: 12
Joined: Jan 2014

Just wondering if anyone is extremely fatigued? I would say my dad rests bewtween 18-22 hours a day, he does take a 5mg oxycodone every once in a while. I'm guessing the radiation effects and sutent have really put it on him. He does not complain about being in pain. Sometimes his chest hurts from some caughing, he was on a steriod for the brain swelling. We are trying to up the boosts and ensure, but he gets a litlle mad at us for making him drink them, but right now that is about all he can tolerate. How long does the fatigue last after radiation? Thanks for the input!

todd121
Posts: 515
Joined: Dec 2012

I'm confused on this issue. I had thought I heard that Sutent does not cross the blood brain barrier and wasn't effective against brain mets. But you've said the opposite.

Could someone please clarify this for me? Is this known to be effective for brain mets, known to be ineffective, or possibly just not clear?

I love coming here for support, but this site is also one of the ways I learn about the various treatments, and I just want to get this straight in my mind.

Thanks.

Todd

johns son
Posts: 12
Joined: Jan 2014

About the brain mets, when we were at Moffit, I was trying to absorb asmuch info as possible. I think th Dr said that he understood why the VA did the full brain radiation. He also mentioned that in the trials of sutent, they took RCC patients that had only cancer in the kidney and lungs. He did mention about the blood brain barrier, but would not rule out it might help with the brain mets. Honestly, i believe the VA was there to just make his final days bearable, they said we should call hospice. Im not ready for hospice, my mother and I will give him full time care. He is extremley sick, but he wants to live, he wants to fight. I no he is hating life right now, but when his grandkids come over, his eyes light up and a smile comes out. Today is the first day off of the second cycle of  sutent. He goes in for blood work on the 14 th, one moe cycle and full body scan. Then back to Moffit on Febuary 3. Im hoping and praying we are on the way for positive results.

About Gerson thearpy, this was a long shot, sort of a hope. When he started it, he was feeling great . We just finished a stone fireplace, could not even tell he was sick. He figured I did no i had cancer for two years, whats 3 Months, if it does not work i will start the sutent.In hindsight it was a horrble decsion, we could of had the kidney removed, the sutent could of been working sooner. Maybe no radiation. He would of been so much stronger physically. Thank you to all of you wonderful people for your thoughts and input, I wish the best to all of you.

todd121
Posts: 515
Joined: Dec 2012

I felt really awful to hear your dad wasn't told what he had for such a long time. I'm glad he's getting good treatment now, and I wish him the best. Hopefully these treatments will set him back in good health.

Todd

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

OK, I will be the one to say it..  all those "Holistic" approaches are great for a healthy person.. but for Cancer patients..well.. not so much.  Sure I suggest a healthy diet, but forget the silly enemas, etc.  And a good steak every now and then is perfectly OK. ( I allow myself one steak a month).   Just reduce all the salt and sugar and all the processed stuff as much as possible.  

AND get his blood test results, see if he is deficient in any area, OR just as important if he is high in an area.  For instance, I am high in iron and potassium, so no spinach or bananas for me.  There is such a thing as too much of a good thing..  too much can be as bad as too little. 

I would of thought someone else would of chimed in by now...

Good Luck..

Ron

todd121
Posts: 515
Joined: Dec 2012

I didn't even understand that the treatments being mentioned where holistic type treatments! I didn't know what they were. Thanks for clarifying.

I mentioned such kinds of treatments to my uncle the oncologist and my oncologist, and they both agreed that there was no proof that these types of approaches helped, and their opinion in general was that some could be harmful and that I should check with them before trying anything to make sure it wasn't interfering with my health and making things worse.

Always good to check with your doctor/inform him/her what you're doing in addition to what they are asking you to do.

Todd

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

I guess I should of said "Alternative Treatments".  Some do nothing, some can be bad themself, and some can counteract the true Cancer treatments.  Plus there are folks that tell people not to do what doctors say just eat their diet and all the miracle cures.  People with Cancer can be easily influenced.. and the results are rarely good...

Ron

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Well I think you are being most diplomatic here, Ron.

But I am not. The Gerson "therapy" is sadly based on pseudo-science.  My wife doesn't like me to call this kind of stuff "quackery" so I will refrain...

As you know I take the issue of diet and nutrition quite seriously.  I have spent over a year researching the topic and will continue to do so until this nasty disease (or some other malady) takes me out.  But I confine my research to what the very latest science is revealing in the lab - much of which currently remains unknown in the clinic - or is considered not worth their time to many doctors who continue to dismiss the value of proper nutrition.

So I bristle everytime I hear about any therapy that claims that cancer can be "cured" just by following a special diet or taking certain supplements or getting detoxed by coffee enemas or by any other nonsense.  It is simply untrue and potentially dangerous.  Still, that does not mean that the baby should be thrown out with the bathwater.  Proper diet and other lifestyle changes - pursued in conjunction with "traditional" therapies (but NOT as an "alternative" to them) - can be extremely helpful and highly productive.  They can provide an additional "edge" that can make these treatments easier to tolerate and extremely effective fighting tumors.

 

 

 

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hi Neil.. and thanks..!  I waited 3 days and no one else touched the subject.. and I am still a "newbie" at times, watching my P's and Q's..

Ron

Billy's Wife's picture
Billy's Wife
Posts: 19
Joined: Jan 2014

Hi John's Son.  This is my first time posting on this site.  Your story inspired me to share.  I am reluctant because I do not want to add to your pain.  My husband sounds very much like your father.  He too worked in constuction and was about 5'8 though in good times he weighed closer to 195. When he was diagnosed he was 52 years old.  He too had an oversight in the beginning of his journey.  He had a CT scan because of a kidney stone and was not told that the other kidney, the one without the stone, had a quarter sized tumor in it.  He discovered that two years later after working with a jack hammer and having blood in his urine.  We thought the jack hammer jarred the tumor causing it to bleed.  The stone happened in 2002, his kidney was removed in 2004.  At the time there was no metastesis so no further treatment.  Then in 2008 a large tumor was found in his iliac crest.  For the next almost five years he fought it with all he had.  After the iliac crest was radiated it came back to be radiated two more times. In order to have it radiated the third time he under went a hip replacement first.  He had Interleukin 2 treatment for two weeks in the hospital.  He had his skull radiated once then later had the tumor removed from his skull surgically. He had radiation done to one lung.  Then he had a plural effusion and had to have fluid removed from his lungs like your Dad probably did. He took sutent for about four months.  He was extremely fatigued and had to have blood transfusions.  In July 2012 we traveled to India where he was the first patient to undergo a clinical trial done by doctors there under the name of Munogenics. If you google munogenics you can learn about it.  We found that the transfusions they gave him in India made him stronger but his disease was just too advanced.  After we returned  he had stereo tactic radiation to his brain for the brain mets discovered while in India.  He was put on Keppra to reduce brain swelling.He also had thrush but then he developed a tumor on the gums of his mouth also. If I believed what I read about his prognosis he should have only had two years after the metastasis.  He had almost five years.  We think it was sheer will that kept him with us that long.  My husband was still driving to the candy store to play his lottery tickets about six weeks prior to his passing.  He only spent 11 days in a Hospice because he truly believed he would win the battle and he fought like a winner does.  He made everyone who knew him proud especially our five kids and two grandkids.  We lost him on Dec. 16, 2012. he was 60 years old.  I will keep you and your family in my thoughts and prayers. We hope your road and your Dad's  is easier that his was.  I hope you feel less alone.  I hope my story hasn't upset you further.  Everyone's journey is different and I wish you all the best.   

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

The bravery and unending willingness to fight in stories like these make me proud to be a member of the human race.

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

I have said this before....I am humbled by the fighters who have told their stories on this site. I am moved by their journey that they have travelled, with courage and grace.

God bless.

Jojo

Billy's Wife's picture
Billy's Wife
Posts: 19
Joined: Jan 2014

Thank you Jojo and Frank for your kind words.  Since reviewing this sight I will be praying for all of you! 

Arleen -- Billy's wife

johns son
Posts: 12
Joined: Jan 2014

We just got home from the hospital, Dad had a fever and became quite lethargic  and extremley weak. The good news he is home resting and doing better. Not sure if it was from a thrush infection, or sutent side effects. They broke the fever and plenty of saline, he was dehydrated. We meet with onycologist Tuesday. lots of questions, after  doing tons or research on these sites, I feel like we are learning so much. They also gave him levaquin for infection. Our main goal now is one more cycle of sutent and the big full body scan. One day at a time. Iwant to personally thank each and every one of you. God bless you all, stay strong and hopeful.

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

Well we are all thinking of you and your family. Hoping for good news on Tuesday. As some of the members here can attest to the miracle of these drugs - we are hoping they have a wonderful effett for your father's health as well.

Hugs,

Jojo

a_oaklee
Posts: 156
Joined: Nov 2013

Johns son:  I have been thinking about you and your father and praying for his recovery.  I am so sorry that he has this terrible disease, and I just cannot fathom that he wasn't informed earlier about his condition.  I think your father's attitude is fantastic.  He is right that he had two years of a certain level of peace of mind because of what he didn't know. 

My husband was diagnosed February 2012 with Stage 4 Clear cell, mets to bones.  Because of the mets to multiple areas in his bones, they did not want to remove his kidney.  He was started on targeted therapy.  He was given Affinitor and the bone mets shrunk.  We went to a different medical center in order to get his kidney tumor removed.   He currently takes Inlyta and has no evidence of metabolic activity.  So, it's almost been 2 years since being diagnosed at Stage 4.  He did have some cyberknife radiation to his spine.  Twice in fact.  And he had his scapula and hip get radiation treatments.  He's doing pretty well.  Still likes to work parttime.  I would say life has changed drastically, because he was a very active physical guy, but life is still enjoyable to him.

Regarding your question about being tired.  Yes, fatigue is a major complaint.  I read an article that said 60% of cancer patients #1 complaint is fatigue.  I have asked the docs if it is from the medicine or the cancer.  They said both.  The radiation therapy also made him more tired for a couple of weeks afterwards.  However, there are members on this site that did not feel any side effects post radiation therapy.  Your dad has been through so much with the lung problem and the radiation and being in the hospital, that it is no wonder that he isn't just exhausted. 

We got referred to a oncology symptom specialist.  She prescribed Ritalin to help my husband be more alert.  It has worked wonders in helping him enjoy life more.  He also was given a drug called Megace that he takes to increase his appetite.  The Inlyta makes him so nauseated that he doesn't feel like eating.  The Megace has helped that problem too, and he has stopped losing weight.  We have learned from our son how to make really great tasting calorie ladden smoothies.  Perhaps you can experiment in the kitchen and create something that he will enjoy.

I'm hoping that the Sutent will work well for your father.  Some members here have had great success with it. 

Glad to hear that your father is home now.  It's better to be home to get the rest he needs to get well. 

The other thing I wanted to tell you is that some Stage 4 patients do not have their kidney tumors removed, or they have to wait a bit in order to have them removed.  In your dad's case it sounds like other things needed to happen first.  And he needs to be in pretty good health to have the kidney surgery.  In my husbands case he waited one year to get his kidney removed.  Their reasoning was that they wanted to find a targeted therapy that was working on the mets before they took time-out to remove the kidney tumor.  That was their thinking.  I do know they have to stop the medicine a couple weeks before surgery and then start again weeks after surgery. 

The things I've shared with you is just our personal experience.  I am in no way a medical professional.  I have learned an extraordinary amount from reading and participating on this site.  Great people here with a vast amount of knowledge and experience.

I hope your appointment goes well and that your father continues to feel better.  He is lucky to have you at his side.

johns son
Posts: 12
Joined: Jan 2014

a_oaklee, thank you for sharing. I am learning so much from  all of you. I joined smartpatients.com, another excellent source of vital information. My dad has some tremors with left arm, he was pescribed potasium and another supplement  and he is having his thyroid checked. He is back on his 3 Rd cycle of Sutent. He started having a drymouth, so he is drinking more. His fever broke and he is staying hydrated. He seems to be  quite a bit more alert, watching more Tv and having longer conversations. His blood pressure is very stable, his heart rate is a bit elavated  90-110 Bpm. His blood sugar has been quite low,  he is a Type 2 Diabetic. Thank you all for all of your input.  John

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