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So glad I found this site

tlr2e
Posts: 10
Joined: Feb 2013

I was just diagnosed with RCC, clear cell in December.  Had a total nephrectomy via open approach on 1/25/13. I found the site yesterday and it was so comforting reading the stories of others.  I found out this week that I do not need to do IL-2 yet, but will re-scan in 8 weeks.  What a relief for me and my family.  I am a nurse and did not count on being on this side of the cancer equation so it is nice to read the stories of others.  I still have a lot to learn about this disease.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

tlr,

Even though you did not volunteer, welcome to our little club. Be**** a nurse I am sure you can help us with the inside stories on recoveries from nepherectomies. Do our stories overstate or understate the recovery and pain if any after surgery?

Best of luck on your scans,

Icemantoo

tlr2e
Posts: 10
Joined: Feb 2013

Hi Ice, thanks for the welcome.  I have spent 20 years taking care of patients after open heart surgery so I must say this whole oncology/ nephrectomy stuff is out of my expertise. The only thing I can go on is my personal experience which is an open incision does take longer to heal from.  i have another 4 weeks or so of FMLA and am trying to get stronger so I can go back to work.  In addition I developed a small Pulmonary Embolism (PE) so take blood thinner shots.  My friends say I look great and they are amazed at my progress.  I am working on putting some weight back on as I lost just over 50 pounds by the time I went to surgery.  

It is so great seeing stories of others, especially those who were diagnosed and had surgery 10+ years ago.  

 

Terri

todd121
Posts: 640
Joined: Dec 2012

Could you please share more about your pathology/diagnosis? I'd be interested in your stage/grade, if you don't mind. Why would you go straight to IL-2? That sounds odd. Or were you basing that on out-of-date information? My RCC oncologist refuses to even use IL-2 at this point from what I understand under any circumstances (I'm supposing because of the new drugs available).

Also, I'm curious about re-scanning in 8 weeks. That seems very soon. I was stage 3a, grade 3 and was told by multiple oncologists that standard of care is re-scan in 4-6 months. My oncologist wanted to wait 4 months to give my other kidney a chance to perhaps get strong enough to allow a re-scan with contrast (my creatinine was too high just after the nephrectomy).

Sorry you have joined us, but glad you've posted and are here. I think if you have RCC, it's better to be here than not.

Todd

tlr2e
Posts: 10
Joined: Feb 2013

Hi Todd, my tumor was 9 cm and was in the kidney along with a cyst on the outer aspect of the kidney.  I had symptoms of fatigue and weight loss for a couple of months but chalked it up to a new job, grad school, family etc.  It was in the process of working up my anemia that the diagnosis was made. My kidney was very abnormal shaped from the tumor which turned out to be 9 cm, it laid close to the spleen and that is why I had the open approach instead of laparoscopy.  In addition I had 2 lymph nodes with metastatic disease(were removed) and I have 2 small nodules on the lung.  My pathology is that this was a clear cell renal carcinoma Grade 3-4.  My RCC oncologist mentioned that IL-2 would be his first line of choice for shrinkage.  However, after the CT showed no change since the December scan (second done in mid-Feb) we are going to wait.  He mentioned several other options if IL-2 does not work but for now we are on surveillance.  My remaining kidney is functioning great, creatinine 0.9 and my february scan was done without oral contrast.

After the next scan I anticipate scans every 3 months.  

Thanks for the welcome to the club.  Not somewhere I anticipated being but hope to be able to make something good come from it.  I have 2 kids 11 and 14 and have plans to be around for a long time yet!

Terri

todd121
Posts: 640
Joined: Dec 2012

Hi Terri,

Thanks for the background. I understand better now.

I'm a bit surprised that IL-2 would be the first approach. That sounds like something that was done maybe 5-10 years ago or more. Perhaps I'm off base (I'm certainly no doctor), but you might want to get a second opinion perhaps from another RCC specialist if possible? It just sounds odd that IL-2 would be the first thing to go to with so many new drugs that are much safer out there. I'll let others here chime in on this. I'm pretty new to this myself, having just been diagnosed in late November myself. However, I've been working very closely with my uncle, a retired oncologist and my doctor is a young kidney cancer specialist and he mentioned to me that they will not even use IL-2 at City of Hope where I'm being treated because of the toxicity and the many other options available. It used to be the only game in town, but is definitely not.

In any case, another opinion never hurts. I've heard that good doctors will never mind you getting second opinions.

Best wishes,

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Actually Todd, you are way off base.  For those who know all the relevant facts, HD IL2 would still be the first choice, if they can take it, if they can find it and if the prospective administrator doesn't exclude them on the basis of giving it only to those with a certain histology (in effect, for clear cell only). 

There's good reason to hope that it will soon see a resurgence and will become the first choice for many, many more patients.  The reason for that hope is that it's the ONLY treatment, apart from successful surgery, that can effect a complete and durable cure of RCC.  That is why those in the know beat a path to the door of the facilities who offer it, in the hope that they may be in the minority of RCC patients for whom it delivers that sought-after total cure.  It's magic for some, although not for the majority who undergo it.  However, there is some, and increasing evidence that even when HD IL2 treatment has 'failed' there can be a residual benefit in the boost it gives their immune system so that they do better on the next treatment than they would have done without the HD IL2.

My reason for anticipating a resurgence is that there are now trials underway in which IL2 is combined with an already known and approved drug that substantially reduces the brutal side-effects of the treatment.  This is likely to have at least three major benefits.  First is that the greater tolerability will enable patients to take more of it and derive correspondingly better results.  Secondly, the easier ride will mean more people will be able to take it without risk of dire 'adverse events'.  Thirdly, if more people can take it it will become cheaper and more widespread and the extra competition among facilities should drive costs down even further.  Moreover, the less acute side-effects accomplished by use of the new drug combo will mean that hospitals will be able to give the treatment in wards, as some of the leading ones already do, instead of in the horrendously expensive intensive care setting.  So the cost of the treatment could drop like a stone.

So, the cytokine era is far from over!  (Incidentally, there are also attempts to save the use of interferon, once the great hope for a cancer cure, by administering it together with sunitinib for the putative greater efficacy hoped for from synergistic effects.)

Most hospitals don't have the resources to offer IL2 and there are a lot of sour grapes, with those who can't offer it running it down because they're not in the game.  However, it's true that there is now a lot more choice with newer drugs and other treatment modalities, so inaccessability of IL2 shouldn't upset anyone too greatly in the meantime, before the possible new age of IL2 dawns.

It is certainly the case that the treatment is brutal which is why careful assessment of the patient's performance and general health is required to determine whether they should be subjected to it.  However, it's striking that everyone who has had it, even without success, says they would do the same again in a heartbeat, for the chance of a full cure.  There is another reason for this - it's a lot less toxic than the newer treatments in important ways - it's a very short treatment in time-scale, so the suffering of the side-effects is very short and usually forgotten almost immediately.  More important is that the side-effects cease after the treatment stops.  This is a huge advantage over the old chemo agents like doxorubicin which is so cardio-toxic that there is a cap on the total number of doses that may be given.  The newer targeted therapies are also toxic - for many  people Sutent presents them with much more suffering than IL2 since the adverse events go on and on, often getting steadily worse, and the effects are not reversible in the way those of IL2 are.

I hope this gives you a better perspective on why IL2 is so strongly recommended for those who can get it and who can take it..

todd121
Posts: 640
Joined: Dec 2012

Appreciate the explanation.

Next time I see my doctor, I'm going to ask him to go into more detail on this. He seemed to act as if they had made a conscious decision not to offer it because of the toxicity. (He said something that has me remembering him implying that the number of deaths due to IL2 was not small in comparison with the cure rate.) This is a large, well-respected cancer treatment center (City of Hope in Los Angeles).

I did understand this is the only thing that has proven any cure rate, so I can see why it would be sought out.

Todd

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