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Scan Results

mrou50
Posts: 389
Joined: Mar 2013

I got the test results back today the IL2 did not work as suspected and the cancer has spread into more areas. Doctors are recommending a new drug therapy to slow the roll of the cancer but at this point there is no longer a cure the IL2 was the only drug that could possibly, although improbable, stop or slow growth. The cancer as I stated earlier is in my bones in multiple places and has spread to some of the adrenal glands, and it is suspected that it may be in my one remaining kidney.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I'm so sorry.  I wish I had some words to comfort you.

All I can do is pray for you, and hope that your suffering is minimal so you can enjoy the things in life that mean so much to you.

Donna~

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Hi, Mark.

Man, I'm sorry about this news.  I was rooting for you from my side of the screen.  I'm glad the doctor wants to try a new therapy to "slow the roll" of the cancer.  He/she is not giving up.  I've read on smart patients people that have tried a number of trials and different therapy with no sucess come across one that actually works.  I'm praying this happens for you.  There has got to be something that will slow and maybe stabilize the progression.  Keep your head up, Mark--you're one tough cookie!

Stub

Kangaroorex
Posts: 45
Joined: Jul 2016

Sorry, that's hard news to take but there are many types and methods of care and some times it take 4 or 5 methods before people find one that works.  Don't give up on yourself and take care of yourself.  We are here for you and rooting for you too. 

Keep up the fight!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Oh Mark, I am so sorry to hear this news. I am sure the doctors will re-examine your options for any success possible.

You are in my thoughts and prayers - as always.

Big hugs

Jojo

Srashedb
Posts: 482
Joined: Dec 2013

Mark:

so very sorry to read this post; this cancer can be this viscious and aggressive. Have you checked out Smart Patients?

Sending you good thoughts

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Oh Mark, this suks! So sorry you are going through all this suffering and news.

Just remember, WE ARE HERE for you, always!

Sending you hugs,

Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

The only drug that could stop growth. I tried it too, it worked better for me than you, but only retarded the growth for a while. There are so many other drugs and techniques coming online (none of which are as tough as IL2).

You must be gutted after this latest setback, but nil desperandum, there are newer (and less debilitating) treatments out there

Good Luck

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

I'm at a loss for words. I feel for you. I'm sorry to hear the news.

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

So sorry to hear... Why IL2 is the only drug to stop the growth? Are other therapies not effective? I was under impression that there are many of them now, you just have to find what works for you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

June 2013. This disease is incurable. The one treatment which may provide a cure is IL2 which also has a high risk of mortality. I was told that it was worth taking the risk because I was young (53) and in pretty good shape. Because of its risk IL2 has to be administered in the ICU.

mrou50
Posts: 389
Joined: Mar 2013

Il 2 is the only drug that has been known to put RCC into remission according to my oncology team there is only a a 2 percent chance of that happening, and a 17 percent chance that it will work at all.  Given this information I took the chance anyway knowing what the other outcome is.  

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I think you know that I have gone through what you are going through. It gets difficult. So far the cabo isn't that bad for me so you still have options to choose from.

mrou50
Posts: 389
Joined: Mar 2013

My oncology team is looking at options and we are meeting Wednesday to deterine the next drug, but they told me these drugs, including Cabo if they work on me will only stretch things. I am meeting with an Orthopedic/Oncologist to on Wednesday as well ot determine what they are going to do about the cancer in my bones, the basic consensus is probably radiation for the effected areas.  I do know, and I have spoken with my family members about this that if they confirm that my remaining Kidney has cancer and they can't stop it or do a partial nephrectomy I will take treatment until my kidney starts to fail and then I will discontinue all treatments my family has agreed with me on this as I don't want dialysis and cancer at the same time.  I hope this does not sound as if I am a quitter or weak but there is only so much I can put up with.  The last two drugs (six months worth) have not worked but I am still holding out that one will work even if it is temporary.

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Mark, please let me address this quote from you: "I hope this does not sound as if I am a quitter or weak but there is only so much I can put up with".  I don't think this would even enter any one of our minds.  As I said in an earlier post--you are one tough cookie.  If any person would question your strength and drive to beat this disease, they only have to read your personal story.  I wish you luck and pray for peace in the decisions that you face. 

Stub

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

See Mark there could be something else to try. And if you don't never, ever would I think you are weak or giving up.

MY philosophy is that we are on this planet to develop and grow; to learn the lessons given. Often in our trials there are hidden blessings or nice surprises.  AND I am a firm believer that you don't always have to be strong! In fact, you can "feel" whatever you want as there is no right or wrong when it comes to our emotions.

Again, I believe, we were born needy, so we can need one another..and never feel we're are going it alone!

Warmly, Jan

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Mark

I'm so very sory, I don't know what to say to comfort you, I pray for you,tthere must be something out there to do some good job. I also thought there are some options and doctors need to find what is best. I'm shocked

You are in my thoughts

damn this disease.

 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I too am so sorry to hear such crappy news. But ITA that there are options to be considered and it seems your docs are on it and looking for best possible way to address this. Hang in there! Hugs.

Kangaroorex
Posts: 45
Joined: Jul 2016

Although there are no other absolute cures out there, stretching things out may be an answer that works for you.  This nasty disease is particularly tenatious.  But there are a lot of therapies that can hold the line and prevent further growth and they do take a lot less out of you than IL2.  there is always the potential of a new drug coming out that will keep the cancer at bay for perhaps a normal lifetime.  Ask about trials and never give up!  I know it sounds strange, but i think a positive attitude and outlook really helps keep your body going and helps the fight.

Hang in there, and remember we are all in this together

 

 

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I feel sick at your luck Mark, but I agree dont give up yet. IL2, I think we can all agree, is a pretty tough experience and I would have been gutted to have gone through that with no benefit at the end of it. There are so many more drugs left to try, with such interesting side effects! None of which ar e even in the same league as IL2 in that aspect, but many of which are approaching IL2 in their efficacy.

My heart goes out to you and I wish you luck. Ive been reading your posts and we all know that you aint no quitter, whatever happens you will have my respect and support

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Mark,

You have been through a lot, are preparing to go through a lot, and "quitter" isn't a label that any of us would slap on you.  Glad to hear your medical team has ideas for support, and your family team is with you, too. 

All the best with this --

Jerzy

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Not a quitter, no way! Just a man wanting to exit decently. But too early to think about exiting, as other Stage 4 guys have confirmed above.

What did your docs suggested re bones mets?

mrou50
Posts: 389
Joined: Mar 2013

They have suggested a medication for reboning but it comes with some issues that could effect the jaw bone I told them I did not want anymore meds at this point.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Those meds for "reboning" as you call it are really bad news.  You can read the horror stories of these meds if you search the warnings and side effects.  Part of my career I worked as a Hyperbaric Tech and some of the patients we treated suffered from the very effect you mention. Horrible and very sad.  I actually refer to those meds as "deboning".  Why these pharmaceuticals exist is beyond me.

Donna~

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

mark, me too. I say no more! I'll figure out my nausea, poor appetite, etc, myself. I tell them that if I can learn the new me from all the physiological changes in me that I prefer that. At least I want to try. If they suggested zometa, it is a 15 minute infusion once a month. It is nothing. Can be done before or after other infusions. So you really don't notice anything.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

It saddens me to hear what you have and are going thru. We all so very much would love to just hear that everyone is doing fine!  I have trouble finding words to say... But I so much wanted just to say I feel for you and have you in my thoughts.

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