The war rages on, but a battle is won (Good news)

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  • foxhd
    foxhd Member Posts: 3,181 Member
    #22
    angec said:

    Thanks
    Thank you very much. From your words I can tell cancer picked the wrong one! We are there fighting too! Enjoy the day! How are you FOX?

    I am GREAT!
    I am doing REAL good. Thanks angec. Since my last infusion, zometa dose and start of radiation, ALL my pain is gone! I'll get my obligatory scan next week and results the first week of Oct. Every scan seems so important.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #23
    Phoenix Rising said:

    Wonderful news!
    So there IS a pot of gold at the end of a cloud burst, too?! I love hearing great reports like this, vdm13. Makes me wanna kick some cancer butt!

    Good plan
    Vin, you are on the $. You are right to keep with what is working and then look forward to the next step when there is a cure. (although your current treatment seems effective) One of these days all of us survivors will get together. Money will not be an issue as I think Wedgie is loaded and he will be happy to send us all to Bermuda. Thanks Wedgie!
  • pjune127
    pjune127 Member Posts: 127
    #24
    foxhd said:

    Good plan
    Vin, you are on the $. You are right to keep with what is working and then look forward to the next step when there is a cure. (although your current treatment seems effective) One of these days all of us survivors will get together. Money will not be an issue as I think Wedgie is loaded and he will be happy to send us all to Bermuda. Thanks Wedgie!

    Hurray for Wedgie!
    I have never been to Bermuda. Count me in!
  • garym
    garym Member Posts: 1,647
    #25
    pjune127 said:

    Hurray for Wedgie!
    I have never been to Bermuda. Count me in!

    Hurray for Wedgie!
    When do we leave???
  • foxhd
    foxhd Member Posts: 3,181 Member
    #26
    garym said:

    Hurray for Wedgie!
    When do we leave???

    Bermuda
    I only bring this up because while waiting for radiation I read a PEOPLE magazine. It said Reba Mcintire took 41 people to Bermuda. "I'm a little bit country, you're a little bit rock n roll!" Besides, I'll only drink cheap beer if that helps. Hell, I'll even sleep outside.
  • angec
    angec Member Posts: 924 Member
    #27
    foxhd said:

    I am GREAT!
    I am doing REAL good. Thanks angec. Since my last infusion, zometa dose and start of radiation, ALL my pain is gone! I'll get my obligatory scan next week and results the first week of Oct. Every scan seems so important.

    Glowing!
    Fantastic news Fox! All of this good news has me glowing! How is the Zometa? Any side affects from that? So happy for you!! Waiting for more good news next week or so!
  • angec
    angec Member Posts: 924 Member
    #28
    foxhd said:

    Bermuda
    I only bring this up because while waiting for radiation I read a PEOPLE magazine. It said Reba Mcintire took 41 people to Bermuda. "I'm a little bit country, you're a little bit rock n roll!" Besides, I'll only drink cheap beer if that helps. Hell, I'll even sleep outside.

    Count me in too!
    I will come along also, someone has to drive after all of those beers! ;)
  • foxhd
    foxhd Member Posts: 3,181 Member
    #29
    angec said:

    Glowing!
    Fantastic news Fox! All of this good news has me glowing! How is the Zometa? Any side affects from that? So happy for you!! Waiting for more good news next week or so!

    No apparent side effects
    Honestly, If I have any side effects at all, they aren't noticeable. Although my radiation oncologist tells me the radiation fatigue is gonna hit me "Big time." We will see. I have told him, like I tell every care provider, "I tolerate these things real well." Most just go, "Uh huh."
  • Max Power
    Max Power Member Posts: 60
    #30
    foxhd said:

    No apparent side effects
    Honestly, If I have any side effects at all, they aren't noticeable. Although my radiation oncologist tells me the radiation fatigue is gonna hit me "Big time." We will see. I have told him, like I tell every care provider, "I tolerate these things real well." Most just go, "Uh huh."

    Radiation
    Hey Fox - I had a few mets on my ribs but since they were able to aim the radiation so that it went in and out of the edges of my body (not hitting any organs) they were able to give me large doses for only a week and with NO side effects. Taking Zometa now every 3mo since I've been taking it for over a year.

    It's been over a year now and I'm amazed how the bone pain is completely gone and the mets aren't even discussed anymore. Radiation seems to be really effective with RCC on bone mets. However I asked if there would be repair of the area and eventually it would go away, but the ans was no.

    Question for you: As a newbie I was wondering if there is some way I can get notified (ex. auto email) when someone responds to my posting, or if I have to constantly remember where my postings are (like this one) and find it again to see if someone responded. Some discussion groups have notification and those are great. Thanks guy.
  • Max Power
    Max Power Member Posts: 60
    #31
    toolman1 said:

    A Genuine full fledged Jedi Knight!
    Now this report warms my soul! Tomorow, 9/19, I go in for 6 week scan results and most likely follow-up treatments, the two of which are Sutent, or IL-2, and I'm sitting on a fence still. This kind of report wants to sway my thinking away from the IL-2, but I believe heavily in the recommendations of the medical community. We'll see. Keep up the fight, and we'll see ya in the winner's circle!

    I chose IL-2.
    Hope your scans are good.
    The way I came to look at it is: Biologics have a small chance of working compared to Sutent, but they have no side-effects so they are worth trying before Sutent. Eventually you will have to get to Sutent, especially because some clinical trials or treatments are allowed only if you have failed Sutent or equivalent!

    My oncologist originally assumed I wouldn't want to go through the IL-2 ordeal considering the 10% chance of success, and described the 4-week on (accumulated in hospital) ordeal. I was on the fence. I was drawn by the lack of having to take any treatment or any side-effects if it worked. But then I found out that halfway through (after two weeks in the hospital with a break inbetween) that they would be able to determine if it was working or not. That clinched it for me.

    Also I was pretty fit and had absolutely no side effects. This made me a much better candidate than someone who was fairly advanced and weak.

    As I've stated elsewhere, my result was stability, not shrinkage, at the halfway point, so I was not qualified for the 2nd half. HOWEVER, the stability lasted for 2 years! (More than some people get out of the full IL-2 treatment) so I consider it worth it for me.
  • Jeff2159
    Jeff2159 Member Posts: 108
    #32
    Another Battle Won Here
    Good job Vin and it looks like I will go off the Sutent after only 2 partial cycles to concentrate on mouth as the sutent just dissolved my skin graft of late June. Here is my recent scan-- alot of prayers helped too

    IMPRESSION:

    1. Stable mild amorphous soft tissue in the anterior superior mediastinum

    which likely represents thymic hyperplasia.

    2. No enlarged mediastinal or hilar nodes noted at this time.

    3. Previous left nephrectomy.

    4. No evidence of metastatic disease noted at this time.



    HISTORY: 53-year-old male with metastatic renal cell carcinoma.



    Exam Date 09-13-2012 ACC# 1244531



    FULL RESULT:

    Prior exam:



    TECHNIQUE: Images through the chest, abdomen and pelvis on a 16-slice

    MDCT scanner were reconstructed at 2.5 and 5 mm thickness. The images

    were acquired precontrast through the abdomen and post bolus IV infusion

    of 125 ml of nonionic contrast (Isovue 370). In addition, coronal

    reconstructions were also performed of the upper to mid abdomen during

    the arterial and portal venous phases The patient received oral contrast.

    Up-to-date CT equipment and radiation dose reduction techniques were

    employed. CTDIvol: 14.80-29.01 mGy. DLP: 4070.40 mGy-cm.

    CHEST:

    MEDIASTINUM: There is stable mild amorphous soft tissue in the anterior

    superior mediastinum which is essentially unchanged from the prior exam

    and likely represents thymic hyperplasia. No new enlarged or abnormal

    lymph nodes are identified within the mediastinum. Previously noted small

    right paraesophageal and right hilar nodes have not increased in size.

    The heart and pericardium are unremarkable in appearance.

    LUNGS: No masses or infiltrates are seen.

    PLEURA: No pleural effusions are seen.

    OTHER STRUCTURES: No axillary adenopathy or chest wall lesions are

    identified.

    ABDOMEN:

    LIVER and SPLEEN: No focal abnormalities are seen in the liver. The

    spleen is normal.

    BILIARY TREE: The gallbladder is unremarkable. No biliary dilation is

    seen.

    PANCREAS: Normal.

    ADRENAL GLANDS: No masses are seen.

    KIDNEYS: There has been previous left nephrectomy. The remaining right

    kidney is unremarkable and unchanged.

    LYMPH NODES: No adenopathy is seen in the abdomen.

    STOMACH AND BOWEL: No abnormalities noted.

    PELVIS: The bladder is intact and unchanged. The prostate is within

    normal limits for the patient's age and unchanged from the prior exam No

    enlarged lymph nodes are seen. No pelvic mass is identified.

    BONES: No bone lesions suspicious for metastases are identified.
  • vdm13
    vdm13 Member Posts: 47
    #33
    garym said:

    Way to go!!!
    Vin,

    Great to hear you are winning the battle, it lifts the spirits of everyone here when someone gets a good report especially someone in the thick of the fight like you. You are a dragon slayer! Not long ago there was little hope for anyone not dx'ed early, but great strides are being made. I believe, with you, that you will be here for the celebration when this beast is gone for good. You have a great attitude!

    Rock on,

    Gary

    If I never said thank you for this...

    ... I should have. Thank you.

  • cdjr
    cdjr Member Posts: 10
    #34
    vdm13 said:

    More...
    The plan is for me to stay on as long as it is working, and if it stops to move to the next targeted therapy, with a goal of living long enough for them to find the cure. Typical efficacy for Sutent is around 12 months, I've heard. I don't want to sound arrogant here, but I plan on beating the beast before then! All the best to your Mom. I hope she does as well as I have so far!

    Everolimus _ any experience of it?

    Hi

     

    I am writing from the UK -  my older brother was diagnosed with kidney cancer in September 2010 aged 55.  He was told it was contained and that no treatment should be necessary once his kidney was removed.  On that basis his surgery was delayed twice and he was not operated on until January 2011. We will never know if that delay was significant and there is no point in looking back, only forward, but by the time his kidney was removed it was obvious it had not been contained albeit scans immediately after showed no signs of the cancer having spread.  His surgeon was clearly so concerned at the size and aggression of the tumour that she referred him to a specialist consultant in one of the best hospitals in London.  He was put on a clinical trial for sutent (we think he had the placebo as when they scanned him in October 2011 several nodules had appeared on both lungs, it was not looking good at that stage).

    As my brother was on a clinical trial he was then automatically switched over to the sutent in November 2011, at the three month scan all of the nodules had reduced significantly, these reductions continued at each scan.  He was on a very high dose and suffered quite severe side effects in weeks three and four of the cycle.  However, he still did all the normal things and continued going to the gym (every morning!) and to work.  He remained very positive and led life to the full.  However, his consultant decided that after a year of being on the high dose, the side effects were quite extreme and that the dosage should be reduced.  At his scan earlier this year the nodules had changed and enlarged, the consultant said the changes were "miniscule" and a non expert might not even have noticed the changes.  He put him back up on the higher dosage of sutent and scanned him again after one month, he was told today that there had been more changes to the nodules, very small again but nevertheless the consultant believed the sutent had now stopped being effective. 

    His consultant is going to now start him on Everolimus and I just wondered if anyone had any experience of how effective it is, the side effects and the average time it is likely to keep things under control before he is likely to need to move on to the next drug, which we understand is likely to be Axintinib.  The consultant seems very positive about things, even with this set back.  Scans show that it is still confined to the nodules in the lungs and there has been no further spread.  He is still going to the gym every day, working and generally living life to the full - you would never know he is living with cancer, he is just so positive, although his hair and eybrows did turn white!

    This is the first time I have ever used a forum like this, so I do hope I have posted it in the right place?!

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