Seeking long term Survivors of Stage IV Wilms

momoftwins
momoftwins Member Posts: 3
edited March 2014 in Kidney Cancer #1
I have read a lot of success stories about Wilms Tumor where the tumor was diagnosed at early staging (I or II), but what about successs stories of Stage IV Wilms? I've met some Stage V survivors, but have learned that each tumor is staged separately in Wilms V and oncologists consider Stage IV to have worse outcomes. My 4 year old has Stage IV. He had a radical nephrectory, but had positive nodes in the abdomen, lung mets (both lungs) heart mets, and mets to the nodes around the clavicle. I have NOT come across a single success story of long term survival of Stage IV. And, I have not read stories without long term complications in young stage IV Wilms.
Seeking someone to reply with honesty AND hopefully someone with Stage IV that reached adulthood.
Kind Regards,
K

Comments

  • carlysmami
    carlysmami Member Posts: 2
    #2
    wilms
    I am in the same boat with my daughter. Can we share information about what we learn? She is stage 4 with mest to liver, both lungs, and one vertebrae. They removed her L kidney, we are still in hospital. bagbitocare at yahoo.com or facebook me tonya trejo bagby

    thanks
  • Danielsonab
    Danielsonab Member Posts: 1
    #3
    Survivor of Stage IV Wilms
    Hi, K, I am a 35 year Stage IV Wilms survivor. I was diagnosed when I was 5 years old and I am now 40. I also had a nephrectomy and had my left kidney removed. I had 6 weeks of full torso radiation and 16 months of experimental chemotherapy. Like your son, my cancer had metastisized (sp?) and was in my blood stream and on my lungs. They told me that I would likely never be able to have children, but I have two beautiful children ages 9 and 11, who have no health issues at all. I was given a 20% chance of survival at the time of my treatments. I am very thankful and very blessed to be where I am today. I have no major health issues other than a little scoliosis and compressed discs in my spine due to the radiation. But, neither of these things greatly affects my quality of life. I hope my story helps to encourage you as you walk the road of treatment with your son. I will pray for you all.
  • Bella07
    Bella07 Member Posts: 1
    #4
    Have Stage 4 Success News for you
    Hi Moms. I know how horribly concerned you are. My son is 2.5 and was just diagnosed at Christmas '10 with Stage 4. He had his left kidney out and has nodules on both lungs. Desperate to find anything I could, I researched and researched. God has sent some angels with information to me...two friends of friends who reached out to me. BOTH stage 4, both included both lungs, one tumor wrapped around a huge main vein and the other, with the lungs and liver affected. BOTH have been successfully treated and BOTH are alive today and cancer free for a loooong time! One was diagnosed at 18 months and is now 16 years old and the other diagnosed at the rare age of 6 and is now 13!! Cancer free for 5 years --which means cured in this cancer type. Both are girls. I keep thinking--if stage 4 is only 10-15% of cases, why is it that the only two I have heard of were both stage 4. ?? I have since learned that two more children (friends of friends) have gone through this as well, but do not have the specifics just yet.

    Hold on to your hope--I am!! Our wonderful Father in heaven will protect our children and give them the strength and ability to overcome the affliction. They will be healed! I know it! The stories are out there and medicine has come a long way. It's like our doctor says, "If a child HAS to have a cancer, this is the one you want." It's highly responsive to therapy. Our children will have a special testimony for Christ. Hang in there, honey! Know that there are other moms right beside you...you are not alone. :0)
  • AmynBri
    AmynBri Member Posts: 6
    #5
    Stage 4 Wilms
    momoftwins,

    I know it has been a long time since this post, but my 9 year old daughter was diagnosed with stage 4 Wilms last month (Jan. 2012). It has metastasized to both lungs with nodules in both including one very large tumor in/on her right lung, it has completely taken over her right kidney and is wrapped around the blood vessel, it is in her lymph nodes including ones surrounding her heart and in her neck, but she has only a little on her liver. I am very scared and am looking to make contact with people who have experience with children's stage 4 wilms specifically.

    She has not yet undergone her radical nephrectomy or resection of the largest tumor in her right lung as we are waiting for them to shrink down enough so that they will be safer to remove. Yesterday was her 5th week of chemo and she starts trial "Regimen M" on week 7.

    I hope you get this and respond back to me. I really really want to hear your story and what treatment your child underwent and how it went. What advice do you have for me? I hope to hear from you.

    ~Amy
  • AmynBri
    AmynBri Member Posts: 6
    #6
    carlysmami said:

    wilms
    I am in the same boat with my daughter. Can we share information about what we learn? She is stage 4 with mest to liver, both lungs, and one vertebrae. They removed her L kidney, we are still in hospital. bagbitocare at yahoo.com or facebook me tonya trejo bagby

    thanks

    Stage 4 Wilms
    Carlysmami,

    I know it has been a long time since this post, but my 9 year old daughter was diagnosed with stage 4 Wilms last month (Jan. 2012). It has metastasized to both lungs with nodules in both including one very large tumor in/on her right lung, it has completely taken over her right kidney and is wrapped around the blood vessel, it is in her lymph nodes including ones surrounding her heart and in her neck, but she has only a little on her liver. I am very scared and am looking to make contact with people who have experience with children's stage 4 wilms specifically.

    She has not yet undergone her radical nephrectomy or resection of the largest tumor in her right lung as we are waiting for them to shrink down enough so that they will be safer to remove. Yesterday was her 5th week of chemo and she starts trial "Regimen M" on week 7.

    I hope you get this and respond back to me. I really really want to hear your story and what treatment your child underwent and how it went. What advice do you have for me? I hope to hear from you.

    ~Amy
  • AmynBri
    AmynBri Member Posts: 6
    #7
    Bella07 said:

    Have Stage 4 Success News for you
    Hi Moms. I know how horribly concerned you are. My son is 2.5 and was just diagnosed at Christmas '10 with Stage 4. He had his left kidney out and has nodules on both lungs. Desperate to find anything I could, I researched and researched. God has sent some angels with information to me...two friends of friends who reached out to me. BOTH stage 4, both included both lungs, one tumor wrapped around a huge main vein and the other, with the lungs and liver affected. BOTH have been successfully treated and BOTH are alive today and cancer free for a loooong time! One was diagnosed at 18 months and is now 16 years old and the other diagnosed at the rare age of 6 and is now 13!! Cancer free for 5 years --which means cured in this cancer type. Both are girls. I keep thinking--if stage 4 is only 10-15% of cases, why is it that the only two I have heard of were both stage 4. ?? I have since learned that two more children (friends of friends) have gone through this as well, but do not have the specifics just yet.

    Hold on to your hope--I am!! Our wonderful Father in heaven will protect our children and give them the strength and ability to overcome the affliction. They will be healed! I know it! The stories are out there and medicine has come a long way. It's like our doctor says, "If a child HAS to have a cancer, this is the one you want." It's highly responsive to therapy. Our children will have a special testimony for Christ. Hang in there, honey! Know that there are other moms right beside you...you are not alone. :0)

    Stage 4 Wilms
    Bella07,

    I know it has been a long time since this post, but my 9 year old daughter was diagnosed with stage 4 Wilms last month (Jan. 2012). It has metastasized to both lungs with nodules in both including one very large tumor in/on her right lung, it has completely taken over her right kidney and is wrapped around the blood vessel, it is in her lymph nodes including ones surrounding her heart and in her neck, but she has only a little on her liver. I am very scared and am looking to make contact with people who have experience with children's stage 4 wilms specifically.

    She has not yet undergone her radical nephrectomy or resection of the largest tumor in her right lung as we are waiting for them to shrink down enough so that they will be safer to remove. Yesterday was her 5th week of chemo and she starts trial "Regimen M" on week 7.

    I hope you get this and respond back to me. I really really want to hear your story and what treatment your child underwent and how it went. What advice do you have for me? I hope to hear from you.

    ~Amy
  • CFaust84
    CFaust84 Member Posts: 1
    #8
    Bella07 said:

    Have Stage 4 Success News for you
    Hi Moms. I know how horribly concerned you are. My son is 2.5 and was just diagnosed at Christmas '10 with Stage 4. He had his left kidney out and has nodules on both lungs. Desperate to find anything I could, I researched and researched. God has sent some angels with information to me...two friends of friends who reached out to me. BOTH stage 4, both included both lungs, one tumor wrapped around a huge main vein and the other, with the lungs and liver affected. BOTH have been successfully treated and BOTH are alive today and cancer free for a loooong time! One was diagnosed at 18 months and is now 16 years old and the other diagnosed at the rare age of 6 and is now 13!! Cancer free for 5 years --which means cured in this cancer type. Both are girls. I keep thinking--if stage 4 is only 10-15% of cases, why is it that the only two I have heard of were both stage 4. ?? I have since learned that two more children (friends of friends) have gone through this as well, but do not have the specifics just yet.

    Hold on to your hope--I am!! Our wonderful Father in heaven will protect our children and give them the strength and ability to overcome the affliction. They will be healed! I know it! The stories are out there and medicine has come a long way. It's like our doctor says, "If a child HAS to have a cancer, this is the one you want." It's highly responsive to therapy. Our children will have a special testimony for Christ. Hang in there, honey! Know that there are other moms right beside you...you are not alone. :0)

    hello
    Hello parents, my name is Chantel. My son which is 2 years old was diagnosed with Wilms Tumor Stage 4 back on December 22, 2011. I am a nervous wreck! He hasn't had his surgery to remove the tumor or kidney yet. I to would like to hear some positive outcomes or great advice on this journey my family and I are going through. Thanks in advance!
  • LISAinTN
    LISAinTN Member Posts: 143
    #9
    Prayers
    I am reading your posts with tears running down my face. I know what it was like to go through kidney cancer myself, but I cannot fathom the agony of having a child go through it. I can offer no help, except to say I am keeping all your children and your families in my prayers. If you just need someone to vent to or talk to, this is a great group of people here.

    Blessings,
    Lisa
  • ZackNormandin
    ZackNormandin Member Posts: 2
    #10
    Stage IV Survivor. 19 Years old.
    I understand this post is from 2010, but I was diagnosed with Stage IV Wilms tumor at 5 years old in 1998. I was so young and I underwent so much chemo/radiation at the time. The tumor was in my right kidney and was removed immediately. I had this done at TheChildren's Hospital in Boston. Dana Farber.

    Anyways, I was considered "cured" at 12 years old after numerous follow-ups and scans to see if anything has came back. I gotta say, radiation at a young age REALLY messed with me. I feel as if I didn't reach "conscienceness" until 14. Before 14, I was a lazy mess. Wouldn't shower. Didn't know and wasn't aware of my surroundings. I was bullied A LOT because of my appearance and the fact that I reached puberty at 10 years old.

    Anyways, When I was 14, I was still coming out of that strange daze. I can officially say I came OUT of the daze at 15 years old. Almost 16. I felt as if I had reached a higher level of conscienceness. I started taking care of myself more than anybody. I'd exercise since I was overweight, lost 70 lbs, definitely healthy and taking care of myself.

    Now, I'm 19 and I turn 20 in January 2013. Last month, I changed Primary care doctors because my original Doctor wasn't thorough and didn't seem to care about anything I had to say.

    Before I changed primary care doctors, I went to the Emergency Room in Late August of 2012. I had pain in my one left kidney. I was thinking it was a UTI. They thought it was Kidney stones. They did a CT scan, an Ultrasound & they said nothing came up. I was sent home. The pain was a 2/10.

    Now back to right now. I have a new Doctor and I tell him about the CT scan in August. He looked at the CT scan results and said it looks like I have a benign tumor on my Adrenal Gland...on the top of my left kidney. My heart raced and I tried to stay calm....but it was difficult. I told my Fiancee about what the Doctor said and she balled her eyes out...but for some reason, I was expecting long term effects. I already HAVE long term effects and this is just more of them.

    My current LONG TERM COMPLICATIONS ARE:

    Paranoia
    Anxiety
    Depression
    OCD(There's another term for it)
    Confusion, Unreasonable thinking. Unrealistic at times. Mild Schizophrenic-like.
    This...THING thats going on.


    Now, after he told me about the benign tumor, he sent me for an MRI about a week later.
    The MRI results came back today and he says that I need to see a cancer specialist because he isn't sure if the tumor on my adrenal gland is benign or malignant. There could be more going on in other parts of my body.

    Secondary Benign or Malignant tumors are common in Long Term survivors of Wilms tumor...especially Stage IV. I have an appointment in Boston coming up within the next few weeks and I ask that you all pray for me.

    Anyways, my advice is that you KEEP...and I mean KEEP KEEP KEEP Appointments for Wilms Tumor Follow ups. Mine stopped at 12 and look at me now. I'm almost 20 with these side effects. The anxiety and depression can be controlled with medication, but you'll WANT WANT WANT and NEED NEED NEED to keep the Follow Ups...even after 7 years. Request it. Beg for it if you have to. Just have a REAL good Doctor. Do Yearly CT/MRI Scans if you must.

    I'm almost 20. A Survivor of Stage IV Wilms in my right kidney. I believe God will help me through my future battles.
  • RHofleit
    RHofleit Member Posts: 1
    #11
    Stage IV Wilms Survivor

    I am a 47 year old Wilm's Tumor Stage IV survivor. I too have had many long term affects.  I was able to have 2 children, but no one told me what could happen to them.  One is healthy, the other is missing the same kidney that I lost.  His simply didn't develop.  We went to doctors before I ever tried to conceive, but they felt it was fine.  I almost lost the second pregnancy.  They're is some connection, but no one seems to see it.  I want my history to help someone, but the only study I've seen, is very outdated.  Last year I was diagnosed with Breast Cancer, and am hoping for the best.  They felt more radiation was too risky, soooo.... Also, I have severe damage to my entire lower spine leading to 6 back surgeries to stabilize.  Is any one still collecting information on the long term issues?  I especially would have liked my OB to have been more educated about the chances I was taking with my then-future children.  I guess I feel guilt over what damage I may have handed down.  Anyone?

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