I am a 35 year wilms tumor survivor

p3ps1cola said:

mother of a wilm tumor survivor

Hello Joseph, My daughter diagnose with a Wilm Tumor shortly before she turn 2 years old.  Two days before she turn 2 yrs she had one of her kidney removed and 2 days after she started chemo.  By the grace of God she will be turning 22 yrs old this year and is doing good.

I'm a 46 year survivor. Diagnosed at age 6. Nephrectomy of left kidney then had cobalt, cosmagen Digitoxin and a couple other chemicals. I think Mom said chemicals were experimetal at the time.

I developed the scoliosis while in the 70's. High blood pressure in my 30's., Diabetes in 2008.

Diagnosed with renal carcinoma Nov. 2010 Had metasis in spine removed Dec. 2010 and partial nephrectomy of right kidney in Feb. 2011.

280rounds of radiation began in March 2011 and started Sutent.

mean56 said:

wt & radiation treatment effects

Hello everyone!

 

I hope this discussion is still ongoing. I was so relieved to ifnd this discussion. I was born with Wilm's in 1956. My surgery was at Columbia Presybeteriasn in NYC. Have also been told that I am the youngest survivor. I was days old. My parents did not share much information so getting some of it here. I grew up normally and WT never held me back [ I always thought I could do anything anyone else could do. If anyone ever asked "what does it feel like to have 1 kidney I would just laugh - it was all I knew and I thought I was normal. Was told I would not be able to have children twice. The last time I had to have a tube & overy removed due to endrometriosis. They had to take my good one and I was told that it looked like a 10 year olds tube & ovary. I have 3 children/miracles. Ladies, so happy to meet you because we have sooo much in common. Nice to meet you gentlemen also! 

I wanted to introduce myself, read all of your comments again, bask in the knowkedge that you are there, you exist and we are eexperiencing so much of the same effects. I knew in my head that the radiation caused and is causing some of the things I have. I feel validated and empowered and relieved.

 

Once again, so nice to meet you. I am so frateful that you are here.

Mary

Mary, thanks for sharing your inspiring message about your sense of empowerment and relief.

mean56 said:

radiation = type II diabetes

Curious to know if any of you had tried alternative treatments for type II diabetes? Because the pancreas has physically been damaged by raadiation - would that be a cause if diabetes is not in the bloodline? In our cases - can it be cured?

I am researching since I was just diagnosed. There is nothing better than your words/thoughts. and a doctor that gets it. 

 

Anyone know how I could get my medical records from that time frame. I have nothing at all. I guess my parents didn't want to remember it.

Thank you ! 

Mary

Hi Mary,

The Beta-Cells in the pancreas manufacturer insulin, the major hormone that regulates the level of blood glucose in the bloodstream.  It certainly is possible to damage these cells by exposure to radiation.  If so, you will not be able to produce enough insulin to keep your blood glucose in check (i.e. diabetes).

I don't suffer from Type II Diabetes - but I do know that you can greatly help ameliorate the problem by following a low carbohydrate diet - essentially the same kind of diet that I recommend for anyone suffering from metastatic cancers.

If you are interested in the details of this diet - plus lots of other valuable information about what "proper" nutrition can do to help fight or prevent RCC please email me at:

n.feldman@videopost.com

And I will respond with my guide to nutrition attached.  It is a 61-page .pdf file.

In addition I would suggest discussing with your oncologist the use of the drug Metformin.  It wiil both help deal with your diabetes and work to limit tumor proliferation.

Hang in there,

-Neil (NanoSecond)

petal74 said:

dito: early menopause symptoms, whilms tumor survivor
Hi,
I'm overjoyed to actually find some people that have gone through the same issues, I've struggled to understand for many years.
From what I've been told, I was diagnosed with a Whilms tumour aged 4. Now I am 35, experiencing the same menopausal systems, was on synthetic HRT since a teenager and have now gone over to BHRT (natural). I would love to connect with other people experiencing the same fertility questions.

Tash

I started menopause around 36. I also had 3 children. They were the biggest awesome surprise. I had Endometriosis on my good side when I was 21. Had surgery to remove adhesions when I was 17. 

I can only give my answers based on my experience.

Mary

p3ps1cola said:

my daughter had stage 3 wilm

my daughter had stage 3 wilm tumor when she was about 24 months and she will be turning 22yrs old this year.  She is a healthy young adult with occasional headaches but I think thats cause of life issues from trying to balanceso much at one time such as college, work and relationship.  

My daugter (4 years )has wilms Tumor, and we are still waiting for the results from the pathologist...we are very woory about. I hope she will be like your daughter survival of the disease

Hi All,

My daughter was diagnosed with Wilms Tumor in September of 2011 at the age of 1. It was as you all know one of the toughest things I had ever dealt with. That entire experience opened me up to another way of thinking when it comes to the medical industry. I will try and make this story short. So i decided not to give me daughter the chemotherapy. I also told the doctors that I would no longer allow them to give her any more xrays or CT scans. I did not want her to have any type of radiation. Her right kidney was removed and that was it. The doctors did not like my decision of not giving her chemo and the other medications. They actually went as far as calling Child Protective Services on me stating that I was endangering my child. My daughter was a stage I Wilms patient. I decided to take her to a holistic doctor and treated her through healthy eating (we are now vegans) and proper vitamins, herbs, and supplements. She is now 3 and will be 4 in May. She is doing WONDERFUL. I have since allowed her to have MRI's at Johns Hopkins Hospital to check if anything has come back and there has been no return. She can still have children in the future, doesn't have any side affects and will lead a "normal" life. I am very sad that these doctors would push chemotherapy, which I got the doctor to admit that it is actually POISON on such young children and babies. My daughter is living proof that the radiation and chemo is not needed!! I wish everyone the best of luck as I am only here to spread a little different information.

deedee0119 said:

I TOO AM EXPERIENCING THE LATENT EFFECTS OF TREATMENT
CVB53 - in response to your post regarding latent side effects -- I too am experiencing them. I am in remission for 43 years now. Was diagnosed with Wilm's when I was 17 months old -- had nephrectomy, chemo & radiation. Doctors told my mother I would never get my period, develop breasts or have children. I started wearing bras in the 5th grade -- because I needed them, I got my period when I was 9 years old, and am the proud mother of a 19 year old and twin 18 year olds (all boys)!

I first started experiencing side effects when I was 18 years old. I developed high blood pressure and have been on medication every since. I started to notice that my clothes were not fitting me correctly around the time I was 16 years old. I remember being taken back and forth to different doctors because they thought I had scoliosis. I was originally diagnosed with scoliosis; however, later on in life, I would find out that it wasn't scoliosis -- but that because of my treatment many years ago -- the right side of my body did not develop as well as the left side. Now at 45 years old, my right hip protrudes out more than my left and slightly curves to the front. I still have the clothing problem. I need a bigger size to accommodate my hips, but pants are always huge around the waist. Not to mention the fact that I have constant lower back and leg pain. I can't sleep on my stomach and have difficulty laying on my sides. I sleep with a ton of pillows to get comfortable.

I am also experiencing a lot of shortness of breath and rapid heartbeat. I can be in the middle of a sentence and all of a sudden run out of air. I have always been followed for these things at Sloan Kettering, but as with anything else, when I became a wife and a mother my ailments got put on the back burner. Over the last year or so, my issues have been getting worse. I've had to go through physical therapy for my back and I have seen a pulmonary doctor because the shortness of breath has increased. He tells me that I am breathing at less than 50% of my lung capacity and that he can find no physical reason why. He sent me to a cardiologist for testing, I guess in the hopes that he would find something to justify the shortness of breath. There I found out that my resting heartbeat is 147. So he wanted to send me for a stress echo...that has yet to come to pass. My husband was diagnosed with metastatic renal cell carcinoma and my time and energy have been all on him. My ailments are once again on the back burner because he is much more important than me right now.

I, too, am curious to know if anyone else is experiencing the same issues and if so, what is being done to help.

Sorry to go on and on, but I thought if I put it all out there that it would be easier for others to discuss their issues.

Hope this finds everyone who reads this well.

God bless,

Dana

I was diagnosed with a Wilm's tumor in 1961; I was 10 years old at the time. I had been sick for years, but it went undiagnosed. When the diagnosis was finally made, my parents were told I would not survive. The tumor had engulfed my left kidney, my liver, and had metasticized to my lungs. Ove the two years following my initial surgery, radiation and chemo, my cancer came back twice in my lungs.  But here I am, 54 years later (I just had my 64th birthday). I have had two different breast cancers as an adult, probably caused by the heavy radiation to my abdomen and chest. Long term effects include a very unsymetrical body and twisted spine. I have always had a lot of back pain, and as I am getting older, it has increased. I also tend to have heavy arms and legs (unlike anyone in my family); I have wondered if it is because of having 1 kidney.  I have radiation fibrosis in my lungs which affect my breathing. And I also have high blood pressure. This year I was also diagnosed with diabetes.

One thing I have wondered is what the impact is of not just losing a kidney, but also losing an adrenal gland. Has anyone ever had information about that?  I'm beginning to sense that so much of what is happening to me know, is partly about my kidney wearing out, but also about having 1 adrenal gland.

Blessings to all of you. It is quite a journey to make.

Beth

Hi my name is Jen. My sister was diagnosed with Wilms when she was about 3 yrs old and had her left kidney removed. She had been in and out of the hospital with different treatments up until she was about 6 yrs old. She had been clear up until about 5 yrs ago. She is now 30 yrs old and at 26 she was rediagnosed with it when a nodule was found in her left lung. A tumor was also found on her thyroid at the same time. They removed 2/3rds of the lung and she had a complete thyroid ectomy as well as both chemo and radiation. Two years later she was clear and married the love of her life and began to start over. Not long after they got back from their honeymoon she was diagnoised again when a tumor was found in the space where her lung lobes were removed and it was attached to 3 of her ribs. Her oncologist kept doing research from the day she was rediagnoised and she began the steps to have a stem cell transplant. A year after the stem cell transplant she was cleared and given the ok to begin adding to their family. From all the treatments she had we were not sure if she would be able to get pregnant or even carry the baby to term but on Feb 1st my nephew was born by emercency c-section after signs of pre eclampsia and eclampsia a healthy 8 lbs 11 oz. Not long after the c-section my sister had her first seizure which they just attributed to the eclampsia but then after a second they finally took her in for a CT which found a sizable tumor on her occipital lobe which without realizing had affected her perhiprial vision. The tumor was removed a week ago today and pathology came back that it was the Wilms tumor again! A CT of her chest abdomen and pelvis came back clear so they are planning just radiation this time around and only once a week for 5 weeks. I don't know if this is the end of this for her so she can enjoy being a mommy and raise her beautiful son or if she is going to be fighting this for as long as her body can handle it.

I live 800 miles away and wish I could be by her side everyday and help her out as much as I can. I plan on moving back but it's not going to be soon enough.

We lost our mom 16 yrs ago to what we were told were the side effects of the cobalt radiation that she received when she was diagnosed with this disease as an infant. With what has been going on with my sister I am not sure what to believe anymore.

Does anyone know of someone that has been through this much and is still living and enjoyng life?

Hello, Everybody!

I was diagnosed with stage III Wilms tumor when I was 5 years old.I had my right kidney removed, was chemotherapy and radiation therapy. Now I'm 26. I also have serious side effects after treatment - scoliosis and a large waist asymmetry, recurrent back pain, fatigue, decreased concentration, heart palpitations. In 20 years I had removed the second malignant tumor – paraganglioma of the right adrenal gland,the same adrenal gland, which left many years ago. Doctors do not say anything, but I'm sure it's a result of radiation therapy as a child... I am in remission now. I want to have children, but worried if I can. I was very afraid of premature menopause. Does anyone have children after such treatment?

I was just recently diagnosed with Wilms Tumor (aout 2.5 months ago).. Stage 4. It spread from my right kidney to the bottom of both lungs as well as my liver. 

I am in chemo currently, and will have surgey and ratiation when the time is right. I'm one month into treatment and the cancer is already responding to the chemo. The tumor has gone down in size, and I am able to sleep on my sides (as I was not able to before due to pain). I used to feel breakthrough pain even on my morphine, but not anymore. 

I'm suffering from occasional nausuea but I stay on top of my meds for that. 

Things seem to be looking up for me. I feel encouraed by the older posts from people who have beat WT. I know I need to stay positive and am open to words of encouragement from others.

Thank you,

Marina