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feeling overwhelmed

elsnively
elsnively Member Posts: 4

Hello...I'm thankful I found this discussion board.  It's a reminder that I'm not going through this journey alone.  I was diagnosed with RCC in April 2014.  I had a partial nephractemy with no treatment.  My RCC has recently returned to a lymph node in my chest.  My oncologist is suggesting that I do high dose IL-2.  He's been administering it in Chicago for over 20 years.  I'm 45 and active with no other health issues.  I know the treatment will be worse than rough but I'm up for the challenge and the chance to eliminate this. 

However, the process of determining the right course of action is overwhelming.   I'm starting to second guess if this is the right treatment for me.  Am I missing newer and more effective treatments?  I feel like I could spend the next couple of weeks traveling the country (MSK, MD Anderson, etc) seeking out opinion after opinion...which would create more confusion and push back the start date of the HD IL2 treatment.

Doing the HD IL2 seems like obvious choice if I feel my body and mind can take the beating.  If I not mistaken, it's the only treatment that can completely eliminate RCC.  For those of you that have gone through this process, please fill-in the blanks with what I'm missing here. 

Many thanks,
Eric

Comments

  • Kat23502
    Kat23502 Member Posts: 179
    Hi Eric. Just so we have some

    Hi Eric. Just so we have some background, can you tell us a bit about the initial size and grade of your mass? Ultimately, you will get 1000 opinions but you have to do what will get you the best outcome AND that you are comfortable with. I'm sure you will get some great advice here.

  • elsnively
    elsnively Member Posts: 4
    Thanks for the quick response

    Thanks for the quick response.  The initial size of the tumor was 5cm and grade 4.

  • marosa
    marosa Member Posts: 333
    Hello Elsnively,

    I don't have the knowledge to answer or give you information but just wanted to say hi and to wish you great results in your choice of treatment.  Im sure some of our members with more knowlegde will show up and be able to answer and comment on your concerns.

  • Hd67xlch
    Hd67xlch Member Posts: 151
    Maybe im missing something............

    but why not just get it surgically removed or have it cryoablated, if thats the only place the cancer has returned to? Did they do a needle biopsy to confirm its metastatic rcc?  I read IL-2 only has like a 15-20% success rate for metastatic rcc ? Good luck with whatever you choose.

  • todd121
    todd121 Member Posts: 1,448
    Is it operable?

    I'm a little surprised that you have one tumor that sounds like it might be operable, and the doctor is jumping to IL-2. Is that tumor operable? It's confirmed RCC by biopsy?

    I'd get another opinion. Maybe 2. I'd want to independent opinions of medical oncologists that do research in RCC that are not connected with each other (I'd avoid getting an opinion from a mentor/mentee, for example) so you get truly independent opinions.

    Most of us have had a resection if the tumor recurrence was more than one year out and the new tumor is operable (via surgery, ablation, or even radiation) before jumping to IL-2 or other systemic drugs. I had a recurrence 2 years after my first tumor and saw 2 specialists and both recommended having the tumor removed. The second specialist I saw does IL2 and is a big proponent of his ability to do it safely. After my second tumor, he said if I get a recurrence in the first year, he might suggest IL2, but if it happens after the first year, and it's operable, he'd suggest getting it removed.

    I really don't think this is a rush decision. You should have time to get 1-2 more opinions. Of course, I'd do it right away though. I don't think I'd worry about getting move confused by other opinions. I personally would feel better if I hear a consensus rather than disagreement. For me, if I got 2 opinions and they disagreed, I'd go for a third. I did that once. In the end, I had two experts who really know RCC agreeing on what to do, and I felt good about my decision. Just because an opinion is first doesn't mean it's best or right. Any good doc should not at all mind you getting another opinion.

    Regards,

    Todd

  • dhs1963
    dhs1963 Member Posts: 513
    edited May 2017 #7
    I had a solitary met in the lungs

    that was 4.5 years ago.  Surgery removed it.  Been ned ever since.  Surgery, if possible, is usually the preferred treatment.

  • Dutch1
    Dutch1 Member Posts: 152
    Getting a second opinion

    Getting a second opinion sounds about right.  IL2 -- that's pretty rough, right?  If surgery doesn't work for some reason, there are other drugs out there.  Maybe there's a totally logical reason to go to IL2, but I'd have a second opinion before jumping into that drug.

  • angec
    angec Member Posts: 924
    Eric, what is the size of the

    Eric, what is the size of the met?  How do they know it is not a response to allergies, a cold or anything else?  I have to agree, it seems like a rush to do il 2.  There are those here who have had it and it is no picnic.  Try removing it or cryo, or recheck in a month or so.  2nd and 3rd opinion for sure.  

  • elsnively
    elsnively Member Posts: 4
    I went through the first week

    I went through the first week of IL 2 last week....it is indeed no picnic!  I was able to get 9 of the 14 possible doses.  Had some issues on Thursday night which the doctors opted to not do any doses on Friday.   Despite the difficulties, I'm actually looking forward to week 2 starting next Monday!  I think the hardest part will be waiting until the end of July to see if its working or not.  

     

  • Jan4you
    Jan4you Member Posts: 1,329 **
    Sorry for all you are going

    Sorry for all you are going through. If you are ever in doubt, would you seek another opinion? Besides here I mean. 

    There also is Smartpatients.com who can offer you even more responses. More will come on this site too. 

    Let us know how you are doing hon. Sending you healing hugs with HOPE!

    Jan

  • foxhd
    foxhd Member Posts: 3,181
    edited May 2017 #12
    It's an experience

    unlike any other. I don't ever go back and think about it on purpose. I brought my own tp and bottled water. The hosp. paper was like the stuff that is in the box that your xmas shirt was wrapped in. (and you use a lot of it). My mouth was so dry my lips would get stuck to the paper cups. I can still taste it. Do your best and know you are being closely monitored.

  • elsnively
    elsnively Member Posts: 4
    edited May 2017 #13
    If IL2 doesn't work, I will

    If IL2 doesn't work, I will definitely seek out multiple opinions.  I do recognize the small probability of success with this treatment.  However, knowing that there is a possibility that this treatment could rid me of this disease is something I couldn't pass up.  Furthermore, surgery wasn't much of an option given the location of the tumor.  Thanks for the well wishes....Eric

  • Deanie0916
    Deanie0916 Member Posts: 435 **
    edited May 2017 #14
    best wishes

    and prayers as you go through this treatment!