Son-in-law with sRCC

2

Comments

  • stub1969
    stub1969 Member Posts: 986 Member
    edited August 2016 #22
    In my prayers

    I'll include him in my prayers.

    Stub

  • hardo718
    hardo718 Member Posts: 853 Member
    #23
    Thanx for the update

    I'll be praying for John.

    Donna~

  • penitent
    penitent Member Posts: 79
    #24
    Biopsy results

    John went to the oncologist yesterday to get the results of the biopsy and heard that both enlarged lymph nodes in the kidney bed were positive for RCC.  So with that regional 'met' his diagnosis has been bumped from Stage III to Stage IV (grade 4).  They're meeting with another surgeon on Thursday to discuss -- and likely schedule surgery to pull those bad boys out and come up with a treatment plan.  There isn't a whole lot of research into sarcomatoid RCC and no specialized chemo for sRCC that I'm aware of, so I think they'll likely treat it as regular clear cell.  

    Thank you for your continued prayers.

    Penitent

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #25
    penitent said:

    Biopsy results

    John went to the oncologist yesterday to get the results of the biopsy and heard that both enlarged lymph nodes in the kidney bed were positive for RCC.  So with that regional 'met' his diagnosis has been bumped from Stage III to Stage IV (grade 4).  They're meeting with another surgeon on Thursday to discuss -- and likely schedule surgery to pull those bad boys out and come up with a treatment plan.  There isn't a whole lot of research into sarcomatoid RCC and no specialized chemo for sRCC that I'm aware of, so I think they'll likely treat it as regular clear cell.  

    Thank you for your continued prayers.

    Penitent

    Nil Desperandum

    Ive been StageIV, grade 4 since May 2013. I'll keep both of you in my thoughts.

  • penitent
    penitent Member Posts: 79
    #26
    Starting on Votrient today

    John is scheduled for surgery to remove the lymph nodes in about 5 weeks, but in the meantime the oncologist is starting him on Votrient to see what impact a 4 week regimen will make.  They'll do another scan at that time to see whether to continue on to the surgery depending on growth or shrinkage of the nodes.  If they go back in to 'scoop out' the kidney bed they'll probably follow up with a regimen of Opdivo.  At least, that's the plan right now.    But it's GOOD to HAVE a plan!

    I really hope the Votrient side effects won't be too bad on him.  Doesn't sound like fun.

  • penitent
    penitent Member Posts: 79
    edited August 2016 #27
    Just an update

    Votrient is not treating John too kindly.  His voice is very hoarse which apparently is a side effect from it combining with the Lisinopril that he takes for high blood pressure.  Also the dry skin is troublesome, especially around the eyes and mouth.  He's using Bag Balm to help protect and moisturize.

    He's only into his second week, so I'm sure there's more to come.  I have natural white hair through age...so we'll be twins when his hair turns white as I've been told it will.

     

  • Rob57
    Rob57 Member Posts: 25
    #28
    Change blood pressure medicine

    I also take Vortient and I take a different medication for high blood pressure, Benazipril. Your son in law might want to ask his doctor about switching. The combination may be affecting the Votrient. Also make sure that he takes the votrient at least one hour before and at least two hours after eating. I find that if I take my normal medications in the moring and eat a light breakfast around 7 am and then take the votrient at about 10 am the effects are not quite so bad. I wish him good luck and hope that the treatments work.

  • rhominator
    rhominator Member Posts: 233 Member
    edited August 2016 #29
    Benazipril too

    Like Rob57 I'm taking the Benazipril and Votrient combo - for 2 1/2 years now. We did a bit of experimentation to find the best time. I take first thing in the AM and eat later.

  • penitent
    penitent Member Posts: 79
    edited August 2016 #30
    Thanks for the suggestion

    Rob:

    I'll pass on your comments and have him address the Lisinopril issues.

  • Allochka
    Allochka Member Posts: 1,074 Member
    #31
    I somehow missed your updates

    I somehow missed your updates... Very sorry to hear he is Stage 4.

    But he is young man and have lots of things to live for. He will fight it and your grandchildren will have their father for a long time to come.

     

  • penitent
    penitent Member Posts: 79
    edited September 2016 #32
    He is fighting hard

    Thank you for your kind comments.  Yes, John does have much to live for!  He's been on Votrient for 2-3 weeks now and it is making him quite weak, very hoarse and has some very sore spots.  We continue to pray that the next set of scans will show good results.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #33
    penitent said:

    He is fighting hard

    Thank you for your kind comments.  Yes, John does have much to live for!  He's been on Votrient for 2-3 weeks now and it is making him quite weak, very hoarse and has some very sore spots.  We continue to pray that the next set of scans will show good results.

    These side effects

    They sound a bit much. I think you should contact your oncologist soon. These quality of life issues are important. There are many other drugs that perform as well as Votrient and perhaps have less appalling side effects.

    It is a case of trying different medications that are effective with less debilitating side effects.

    Good luck

  • penitent
    penitent Member Posts: 79
    #34
    Update from the last scan

    Good news/bad news...

    Good news is no 2nd surgery for now to remove the cancerous lymph nodes in the renal bed.  Not so good news is that those nodes have grown, slightly, but the mets have moved definitely to the right lung, with a new nodule there and evidence of possible pleural carcinomatosis, which as you probably know is the diffusion of tumor into the pleural space in the lung lining.

    He's starting on Optivo on Monday and we'll have to see how he responds to that.  Please keep up your prayers.

    BTW, take a look at   www.lifechronicles.org   It's based in Santa Barbara, CA and their mission is to create memories, via DVD interviews, story telling, etc. for primarily advanced cancer patients (although they also do alzheimer patients and patients with other potentially life threatening diseases.  Kate Carter of Life Chronicles visited us in Oregon this past weekend to film John, my daughter Elizabeth and their two children.  It can be a great gift.  Just sayin'....

  • hardo718
    hardo718 Member Posts: 853 Member
    edited September 2016 #35
    Thank you...

    ....for sharing all the updated info on John and I will sure keep him in my prayers.  Thank you also for sharing the info on Life Chronicles.  Wish I heard or thought of that sooner while my mom was still verbal (she has alzheimers).

    Have a blessed day,

    Donna~

  • Allochka
    Allochka Member Posts: 1,074 Member
    #36
    Very sorry to hear... But he

    Very sorry to hear... But he is still fighting, so nothing is completely lost.

    How is your daughter ? Stupid question, I know, given the circumstances. I wish her to get all the strength and support she needs.

  • penitent
    penitent Member Posts: 79
    #37
    Thanks Allochka

    My daughter is an RN, so she has that strong nurse aura on the outside but I know the stress and worry is getting to her.  As we all know...it's hard and I wouldn't wish this 'club' on anyone.

     

  • Allochka
    Allochka Member Posts: 1,074 Member
    #38
    It is very hard. But I'm sure

    It is very hard. But I'm sure she is happy to have her mom on her side, I'm sure she feels your love and it gives her strength to support husband fully. Damn disease, I can think about it pretty calmly when speaking about our family's brush with it, but I hate it when hear stories like this.

    please continue to inspire your son in law to keep fighting!

  • Kangaroorex
    Kangaroorex Member Posts: 47 Member
    #39
    Footstomper said:

    Be careful

    Be careful what you read, most is outdated, some is insane, none is keeping up with modern reesearch, which is continuing apace and turning cancer from a death sentence to a chronic disease. I am in my fourth year after the discovery of a 10cm tumour with aggressive tendencies. I'm on a immunotherapy that was only approved this year seems to **** the cancer and has no side effects of note.

    At this moment your worst enemy is your imagination. Dont worry, its never as bad as your imagination. Its no walk in the park, but it is doable and never as bad as you think.

    This is so true

    The worst and scariest moment of my life is whe I was initially diagnosed and started reading the "official" survival rates.  Reading behind the scenes shows most of this data to include numbers from 30-40 years ago, which just doesn't provide a real indication of survival with all the recent changes in the field.

    To top it off it seems like every day there are new treatments entering development which offer high success coupled with low side effects.  Stay positive and keep your eyes open for new treatments and good doctors!

  • todd121
    todd121 Member Posts: 1,448 Member
    #40
    penitent said:

    Thanks Allochka

    My daughter is an RN, so she has that strong nurse aura on the outside but I know the stress and worry is getting to her.  As we all know...it's hard and I wouldn't wish this 'club' on anyone.

     

    Wishing Him Well

    Hi penitent. I'm coming in reading after being away for a couple of months and just caught up with your son-in-law's story. Really sorry to hear he's had to join our ranks.

    I'm sending good thoughts through the Ether. I hope they help.

    You don't talk much about the specialist(s) he's seeing. Is he seeing a specialist in RCC? With his cancer type and condition, he absolutely should be seeing a medical oncologist that is up-to-date on the latest research in RCC. I hope one is available near you. I've been lucky living in the Los Angeles area there are multiple top RCC specialists to get opinions from. They don't always agree, by the way, but it sure helps me to feel good about my choices when they do. When I was first diagnosed, I saw a general oncologist without RCC experience and frankly his opinion was just not right. I pushed on and saw 2 more (both RCC experts) and got much better information. To be fair to him, it probably wouldn't have changed my outcome, I'm still happy I pushed on until I found specialists that do research in this disease and keep up with the absolute cutting edge. The field is rapidly changing.

    Best to you and to him and the family,

    Todd

  • penitent
    penitent Member Posts: 79
    #41
    Starting Nivo today

    John's first infusion of Opdivo is this afternoon.  His oncologist will be attending the first couple of treatments as there is always concern about initial reaction to the meds.  I pray that it will do what it's supposed to do.

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