My story

 My story is kind of a long one but I'll try to keep it short.  I should probably warn you that I use voice recognition software to "type" with so there are occasionally misspellings or incorrect words.  I try to catch them all and correct them but sometimes I miss a few.

I'm 44 years old, married, and the father of a wonderful 12 year old whom I homeschool. 19 years ago I was diagnosed with rheumatoid arthritis which, at this point, affects every joint of my body.  I've also been diagnosed with 11 other connective tissue disorders/autoimmune diseases.  As a result, I have been unable to work for almost 13 years.  About three years ago, after taking prednisone for over 10 years, my bone density finally tanked and my vertebrae started spontaneously fracturing  At the time that I write this I have a total of 14 severe compression fractures in my neck and back.

Last spring I went to see my primary care physician because my abdomen was bloated and I thought I was retaining water as a side effect to one of the 22 medications I take each day.  He was just going to prescribe a diuretic but, being the thorough doc that he is, he decided to order an ultrasound of my abdomen first.  During the ultrasound the technician noticed something unusual near my right kidney.  Two weeks and a CT scan later I found out I had a stage three renal cell carcinoma on my right kidney.  The good news was that it was still encapsulated and had not spread though it was very close.  The bad news was that because of all of my other health problems none of the surgeons I spoke with believed I would survive a nephrectomy and all agreed that that was my only treatment option.  So I was basically told to go home and die.  Nice, eh?

I don't sleep much as it is because I can't lie down because of my back and because of the extreme, nonstop pain I am in... so I would sit in the living room all night with a video camera making video DVDs for my daughter to play.  One for each Christmas; one for her first date; one for her graduation; one for her wedding day... you get the idea.

After about a week of this I decided I wasn't going to just lie down and die and I started searching the Internet.  I found a doctor in the town right next to mine who had developed a new surgical procedure called heat ablation specifically for renal cell carcinoma patients who could not undergo either a partial or full nephrectomy due to other medical complications.  If that wasn't describing me I don't know what was.  The procedure involved inserting a probe into the tumor and heating it until it was destroyed.  It could all be done laparoscopically and while it was a relatively new procedure, so far it had a 97% success rate. The best part was my insurance - which usually sucked - actually covered it! So I wouldn't have to bankrupt my family to stay alive.

The next morning I called his office as soon as it opened and caught him just as he was leaving to attend a seminar in Europe.  He would be gone for two weeks but agreed to see me the day he returned.  This was in May and on June 26, 2008 my tumor was removed.  I was in the hospital less than 24 hours.

I've had two CT scans performed since the procedure and, so far, I am cancer free.  The reason I'm posting this message is because even though the procedure was minimally invasive and everything has healed just fine, it has been over seven months and I still don't feel fully recovered.  I only have about half the energy I had prior to the procedure.  I know I have a whole bunch of other health problems that could be contributing, if not the cause, but I just wondered if there was anyone else out there who had undergone this type of procedure and how long it took for them to recover.

I hope this doesn't make me sound ungrateful because I know how very blessed I am to even be alive at this point... I guess part of me is just worried that there's something else going on that could be the cause and I'm hoping someone out there will respond, "oh yeah, I felt like crap for a year afterwards" so I can stop worrying.

Thanks for listening.  Bob in Florida

 

 

 

On 2/9/2009 Bob in Florida wrote:

 My story is kind of a long one but I'll try to keep it short.  I should probably warn you that I use voice recognition software to "type" with so there are occasionally misspellings or incorrect words.  I try to catch them all and correct them but sometimes I miss a few.

I'm 44 years old, married, and the father of a wonderful 12 year old whom I homeschool. 19 years ago I was diagnosed with rheumatoid arthritis which, at this point, affects every joint of my body.  I've also been diagnosed with 11 other connective tissue disorders/autoimmune diseases.  As a result, I have been unable to work for almost 13 years.  About three years ago, after taking prednisone for over 10 years, my bone density finally tanked and my vertebrae started spontaneously fracturing  At the time that I write this I have a total of 14 severe compression fractures in my neck and back.

Last spring I went to see my primary care physician because my abdomen was bloated and I thought I was retaining water as a side effect to one of the 22 medications I take each day.  He was just going to prescribe a diuretic but, being the thorough doc that he is, he decided to order an ultrasound of my abdomen first.  During the ultrasound the technician noticed something unusual near my right kidney.  Two weeks and a CT scan later I found out I had a stage three renal cell carcinoma on my right kidney.  The good news was that it was still encapsulated and had not spread though it was very close.  The bad news was that because of all of my other health problems none of the surgeons I spoke with believed I would survive a nephrectomy and all agreed that that was my only treatment option.  So I was basically told to go home and die.  Nice, eh?

I don't sleep much as it is because I can't lie down because of my back and because of the extreme, nonstop pain I am in... so I would sit in the living room all night with a video camera making video DVDs for my daughter to play.  One for each Christmas; one for her first date; one for her graduation; one for her wedding day... you get the idea.

After about a week of this I decided I wasn't going to just lie down and die and I started searching the Internet.  I found a doctor in the town right next to mine who had developed a new surgical procedure called heat ablation specifically for renal cell carcinoma patients who could not undergo either a partial or full nephrectomy due to other medical complications.  If that wasn't describing me I don't know what was.  The procedure involved inserting a probe into the tumor and heating it until it was destroyed.  It could all be done laparoscopically and while it was a relatively new procedure, so far it had a 97% success rate. The best part was my insurance - which usually sucked - actually covered it! So I wouldn't have to bankrupt my family to stay alive.

The next morning I called his office as soon as it opened and caught him just as he was leaving to attend a seminar in Europe.  He would be gone for two weeks but agreed to see me the day he returned.  This was in May and on June 26, 2008 my tumor was removed.  I was in the hospital less than 24 hours.

I've had two CT scans performed since the procedure and, so far, I am cancer free.  The reason I'm posting this message is because even though the procedure was minimally invasive and everything has healed just fine, it has been over seven months and I still don't feel fully recovered.  I only have about half the energy I had prior to the procedure.  I know I have a whole bunch of other health problems that could be contributing, if not the cause, but I just wondered if there was anyone else out there who had undergone this type of procedure and how long it took for them to recover.

I hope this doesn't make me sound ungrateful because I know how very blessed I am to even be alive at this point... I guess part of me is just worried that there's something else going on that could be the cause and I'm hoping someone out there will respond, "oh yeah, I felt like crap for a year afterwards" so I can stop worrying.

Thanks for listening.  Bob in Florida

 

 

 

Dear Bob, yours is quite a story; I'd read about heat ablation and had no idea it was available in the States.... you might want to get a copy of Dr. Atkins' vita-nutrient solution (used on Amazon, 1 cent plus shipping) your liver may be having a hard time getting rid of the anesthesia you were given... or, google " German New Medicine" and try to figure why your body "Needs" to be sick. The idea is so far out I wouldn't suggest it, but the doctor's cure rate is so good he can't be ignored. All Best to you, Merry Miracle

Wow, that is some story! You're clearly an amazing person. I'm so glad to hear the heat ablation therapy worked.

Hope you get feedback here, but would anyway recommend you check out another mailing list on RCC called kidney-onc which has possibly the highest 'density' of RCC patients and expertise in any one place (lots of us here are there too).

You can join on http://cancerguide.org/kofaq/

All the very best - and your daughter has a dad to be incredibly proud of.

Julie.

it just struck me - how come the people who do the heat ablation don't put patients in touch with each other? After all, they are the ones who know who've had it done!

Is there any kind of patient group, I wonder? (I assume not, or you'd know - on the other hand, if there isn't, maybe you could start one) (docs do seem to forget sometimes that patients like to talke to each otehr!!!!)

 

Julie.

 

On 2/11/2009 JulieUK wrote:

Wow, that is some story! You're clearly an amazing person. I'm so glad to hear the heat ablation therapy worked.

Hope you get feedback here, but would anyway recommend you check out another mailing list on RCC called kidney-onc which has possibly the highest 'density' of RCC patients and expertise in any one place (lots of us here are there too).

You can join on http://cancerguide.org/kofaq/

All the very best - and your daughter has a dad to be incredibly proud of.

Julie.

Julie-

Thank you for your kind comments...but I don't feel particularly "amazing." LOL  God knew what he was doing...the day after I was informed I could no longer work, I found out my wife was pregnant (after 12 years of trying unsuccessfully).  If I didn't have my daughter to look after, I doubt very much I would still be around.

Thanks for the referral.  I signed up for a mailing list - it may have been the one you recommended - and was overwhelmed with dozens of emails every day.  After about a week I unsubscribed.  I just don't have time to read through them all.

God bless and thanks again for the reply.

Bob in Fla.

 

 

On 2/11/2009 Bob in Florida wrote:

 

On 2/11/2009 JulieUK wrote:

Wow, that is some story! You're clearly an amazing person. I'm so glad to hear the heat ablation therapy worked.

Hope you get feedback here, but would anyway recommend you check out another mailing list on RCC called kidney-onc which has possibly the highest 'density' of RCC patients and expertise in any one place (lots of us here are there too).

You can join on http://cancerguide.org/kofaq/

All the very best - and your daughter has a dad to be incredibly proud of.

Julie.

Julie-

Thank you for your kind comments...but I don't feel particularly "amazing." LOL  God knew what he was doing...the day after I was informed I could no longer work, I found out my wife was pregnant (after 12 years of trying unsuccessfully).  If I didn't have my daughter to look after, I doubt very much I would still be around.

Thanks for the referral.  I signed up for a mailing list - it may have been the one you recommended - and was overwhelmed with dozens of emails every day.  After about a week I unsubscribed.  I just don't have time to read through them all.

God bless and thanks again for the reply.

Bob in Fla.

Hi Bob,

I know that the ACOR list can be overwhelming but if you are interested in trying again, there is a "digest" version which gives you all the day's e-mails in one e-mail. You can then skip through those if you are looking for some specific advice. ACOR also has an archive search which is also not easy to use but can be very helpful in looking for a topic such as fatigue or post nephrectomy pain, etc. Best of helath. I am also in Florida and go to Moffitt but will soon be swtching to Dana-Faber for treatment.

Carl

 

Bob - yes, it can be a lot of mails! I actually created a new email address just for kidney-onc, which means they don't clutter up my 'real' mailing address. As Carl says, you can get a digest version.

But it would be great if you would post your own ablation experiences up there, as I am sure other members would find it really useful, and you might find others who have had it too.

Best, Julie.

hi bob,

I really feel for you....sure is rough ..... was glad to hear that you had that type of cancer surgury...and that it was better for you ...I was diagnosed with stage 3 b renal cancer  and suffer from chronic pain and have numerous medical problems on top of it.....the thing is that my doctor said that since I was on so many meds ....was having the side effects that go with them....so he took me off of the anti-inflammatories, and some of the other meds....and he put me on morphine....cause my doctor said that the morphine was around alot longer than ...alot of those other meds....they were really messing up my body big time.....was having stomach bleeding,ulcers,,etc...then my liver enzymes were up,etc...so in the long term...doctor told me i could have liver,kidney failure later down the line..oh yah throw in the problems with the lungs and heart......was  going through so many tylenols 3s for the bone pain......was able to reduce the steroids... and got cataracts because of them.....that is another story....but was put on morphine everyday for the pain...then if I have a fall or get injured or whatever....I have a breakthrough pain med to take .....so I take a low release morphine...and a fast acting one when i experience added pain on top.to take care of the short term problem....then goback to the regular dose of my morphine.....the thing is morphine is less toxic to the body organs...than alot of the other meds.....take tylenol....it is really toxic to the liver for example....and the anti-inflammatories...were causing stomach bleeding ,ulcers,esophagitis,gastritis,nausea, vomiting,etc...liver enzymes were up....just to name a few problems...couldnt breath with the asthma,chronic bronchitis,etc...a simple cold would literally cause me to be admitted to hospital. The steroids would blow me  up with swelling and weight gain, the cataracts....got to the point ...where the hospital staff could not get an IV line into me and the central lines in my chest and left groin were gone.Had a difficult time with my cancer surgury

.... the anesthesiologist had such a hard time getting a IV line into me....they tried time after time trying to stick those needles into me...that I eventually lost count ...they were going to cancel my cancer surgury when I was right in the middle of the operating room.....felt so scared and alone...trying to keep a brave face  with the stress of the cancer .... from all  the pain that I had to endure...cause they just did not stick the needle in yah...they turn it around  and move it in your flesh.....at the last minute just before they were to cancel my surgury ...they found one spot but was very  tenuous(the IV could  go at any time)so woke up after surg with a central IV line in my neck.then I didnot get My proper pain therapy.and I was in so much pain.....my husband had to bring my morphine prescription bottles into the hospital to prove that I was that dose ...even though the hospital had all the information from  on  pre admission forms filled out by my doctor,saw pre-admission doctors/nurses,the anesthesiologist that I seen ....Like I followed all the protocal...because i was considered a high risk patient....had to see even more pre admission doctors... discussed everything about the surg and that I was a chronuc pain patient on morphine..so they knew....and they even had  the info from previous  admissions to hospital.....they put me through H!!!!!!!!I  felt so traumatized by the whole procedure......the pain after surgury was so horrible...it was like getting no pain meds at all...and you just went through major surgury...duh....it was so bad I just wanted to die.... eventually I did get the pain meds ...but by then I was so long gone..it hardly touched the pain....past scream zone....and because of all that  I went through...it took me longer to  recover  and experienced more post operative problems....so that is why ...ALWAYS...always have someone with you when you are in hospital.......