member participation

angec said:

Sue, sorry to hear that.

Sue, sorry to hear that.  Yes, it does suck, big time! What have you tried so far? Is it time to dig deeper and see if you need a different type of drug? For instant there are the tki's and the mtors.  Neil, help me out please.. lol.  Maybe they need to combine?  I forgot what you did recently.  Did you already update on SP?  Hoping and praying something can go your way soon. Hugs, don't give up.... something will work.  Was il-2 an option?

Not sure how much help I can offer without knowing Sue's medical history (what has been tried, etc.).

However, it is not possible to combine TKI's with m-TOR's.  The combo is far too toxic.

The "outisde the box" drugs of choice right now are Cabozantinib (Cometriq) which is a TKI that combines several VEGF's and, most importantly, a c-MET inhibitor.

By far the most exciting is Pembrolizumab (Keytruda) which is an anti-PD1 made by Merck and is fully available off-label.  I would try to go for that.

Suekub said:

Thanks

So far I have tried Votrient, Afinitor (as part of Meteor clinical trial) and most recently a phase 1 trial of a drug called ASLAN002. Being in Australia we don't have as many options for trials nor do we offer IL2. I think the next drug I will be trying is Sutent which I am hoping I will be able to get at minimal cost under our PBS scheme. Our health system here is for the most part good but has many idiosyncrasies which unfortunately stop us from receiving continued help even if you are fully insured.

Neil, I have clear cell which has spread to multiple organs, including pancreas, spleen, liver, lungs,  thyroid, breast, spine and several other soft tissue areas. 

I am not yet giving up but am so sick of receiving bad news. Would love to catch a break.

Sue

I was sunning in Aruba during most of this post. Now that I am back I am trying to help (ice down) the newbies as best I can. One limiting factor is that many come on this board with too few facts on their posts and the bios. on their CSN space not filled out. The last thing I want to do is give an inappropriate answer because I do not know where the poster is on their journey.

Sorry some in the past have been offended by the humor of others  and myself, but those of us who have had a neph. and/or have gone thru the scare and worry of a Kidney Cancer diagnosis should have the right to laugh about it on the other side.

Icemantoo

APny said:

Sue, I hope you catch a

Sue, I hope you catch a break! And I really hope Sutent does the job. I’m just curious, how is it that your healthcare system stops you from getting continued help if you’re insured?

I probably didn't word my post very well. In our private health insurance system, drugs are generally not covered. Many drugs are covered by our government Parmaceutical Benefits Scheme which means that if it is listed with the scheme the mxaimum you generally pay is a little under $40 for each script. Unfortunately many drugs are not covered under this scheme. The private insurance side of things covers hospital costs and costs to doctors and ancillary providers etc. Even if you hold private medical insurance, which I do, there are many gaps. So far I have been lucky in that I have had very few out of pocket expenses but I fear this is about to change. I am hoping that my onc can swing Sutent at the reduced cost due to the fact that I didn't really get to maximum dosage level of Votrient. Basically, we have a choice of 1 of a few of the available  RCC drugs initially at the reduced cost. If one doesn't  work you can have another but at full cost! Stupid but true....

a_oaklee said:

A little bit of this and that

I joined here january 2012.  The date is not reflected with my screen name, because the account got recreated.  

I remember well the discussions going back and forth between you (nano) and our beloved Texas wedge.  I thought of it like mentally sparring.  I was amazed at the level of intelligence and the classy way you would both go about expressing yourselves, often disagreeing, and it seemed to me you were both enjoying yourselves!  I miss those conversations.  Texas wedge was a unique character that I miss so much.  Do you remember when he would constantly instruct people that they shouldn't start a new thread?  It still brings a smile to my face.  

Todd. Those are really good insights into reasons for not posting.  I responded mostly with my opinion that people shouldn't feel obligated, but then I started thinking about my own reasons for not posting very much.  Here we go...

I read a post and I think I have no more to offer than what has already been said.  It would be repetitive, redundant.  Some people here are phenomenol at offering ssupport, they express themselves well with the written word.   I don't think that is one of my gifts.  in the beginning of my joining here it took me a long time to feel caregivers were welcome.  I have gotten over that mostly.  The biggest reason I don't post is that I am so worn out and exhausted as a caregiver to my husband and my elderly mother.  Some days I have nothing left to give.  I spend every waking moment taking care of others.  Three days ago while at the hospital, I fell. Broke my leg, a couple ribs, had ulcerative colitis flare.  While I spent the day in ER, my mom passed away in another place in the hospital.  My husband is struggling to help me and he can't.  We both cried.  This is what I mean when I say I think people just do the best that they can do at any given moment.

srashed.  I want to clarify to you that I didn't make those statements, nor did the same individual make them.  It's not how I think and no contradictions.  

In the most loving and kindhearted way, Ron pm'ed me and said csn is the fun site, and smart patients is generally more serious patients and discussions.  Ron loved this site.  He called it "the fun place".  I'm glad I knew him here.  He clearly valued everyone here.  I will miss him, and it won't be the same.  

 

 

A-oaklee... so, so sorry to hear that your mom passed and you fell and hurt yourself so bad! I totally get what you mean when you say that you are overloaded.  Sometimes it just never ends!  I am sorry for all that you are going through. i hope this place continues to be encouraging and helpful.  It seems like you need a big, huge hug.  Here it is HUG!  Praying that things get better for you. Colitis is no joke.  I hope you heal fast and get some relief. XXOO  

angec said:

Sorry, Sue that the others

Sorry, Sue that the others didn't work for you. Neil is correct, Cabo or Keytruda Pd-1 would be a good choice. Is there anyway at all that you can try to get on one of these?  How long are they leaving you on the drugs you tried before they scan again?  Has it been the usual three months? Suppose they try to scan at two months or less now?  Is this an option?  I pray that you can get a drug that will work for you all the way!   I am pretty sure i read that Keytruda Pd-l is great with Clear cell.  Try to find out about that one. Keep up the fight, and hope Sutent works great for you.

Not sure about cabo and it's use here but I know Keytruda has not been approved for use here. As far as I kniw there are no trials using either or any other PD1 drugs. Hopefully will have a little more to report after my 9 Dec appointment. I have scans every 2-3 months. In the meantime tomorrow morining I am heading off to a resort for 3 days of relaxation, good food and hopefully nice weather!

Suekub said:

Clarification

I probably didn't word my post very well. In our private health insurance system, drugs are generally not covered. Many drugs are covered by our government Parmaceutical Benefits Scheme which means that if it is listed with the scheme the mxaimum you generally pay is a little under $40 for each script. Unfortunately many drugs are not covered under this scheme. The private insurance side of things covers hospital costs and costs to doctors and ancillary providers etc. Even if you hold private medical insurance, which I do, there are many gaps. So far I have been lucky in that I have had very few out of pocket expenses but I fear this is about to change. I am hoping that my onc can swing Sutent at the reduced cost due to the fact that I didn't really get to maximum dosage level of Votrient. Basically, we have a choice of 1 of a few of the available  RCC drugs initially at the reduced cost. If one doesn't  work you can have another but at full cost! Stupid but true....

Okay, got it. I really hope you can get the Sutent at reduced cost. It's a shame that you can't just switch from one that doesn't work to one that does without having to pay full.

AprilandChuck said:

Warning

I may not be on much.. instead of checking out without explanation again.. I will give you all one.. My Moms... Small Cell Lung Cancer is active again less than 3 month after going inactive.. Chemo at least the same will not work its to soon... My father passed away Monday and I am going to have to be dealing with some heavy emotional stuff and some legal issues from that its going to be a mess.. Chucks scans are Tuesday I am praying for a good one.. more bad news will prob send me to the Hospital.. There is no way at this point I can be a cheerful participant on this board.. I am exhausted and my optimism is low.. I am still hopeful but now I am also terrifed... 3 of the most important people in my life 1 died, 2 have cancer and hard to control ones... So taking a break dealing with legal stuff and heavy emotional things.. So as always I am sending positve energy and warm thoughts to you all.. Chin up and hugggssss

April,

I am so sorry for your loss. You have some major struggles ahead of you. You will be in my thoughts and prayers.

Hugs,

Jojo

AprilandChuck said:

Warning

I may not be on much.. instead of checking out without explanation again.. I will give you all one.. My Moms... Small Cell Lung Cancer is active again less than 3 month after going inactive.. Chemo at least the same will not work its to soon... My father passed away Monday and I am going to have to be dealing with some heavy emotional stuff and some legal issues from that its going to be a mess.. Chucks scans are Tuesday I am praying for a good one.. more bad news will prob send me to the Hospital.. There is no way at this point I can be a cheerful participant on this board.. I am exhausted and my optimism is low.. I am still hopeful but now I am also terrifed... 3 of the most important people in my life 1 died, 2 have cancer and hard to control ones... So taking a break dealing with legal stuff and heavy emotional things.. So as always I am sending positve energy and warm thoughts to you all.. Chin up and hugggssss

So Sorry for the loss of your father.  My prayers are with you and family as you are care giver to two other thats very dear to you also.  Will remember you in my prayers daily.