About Peggy

PeggyRCCThere was a time I worried only about my family’s health, and never even thought that I might fall ill.  What conceit and what a surprise when my fun decision to do a little cosmetic surgery led to a blood test, which led to the ER, which led to eight months of fading away (nice way to say dying) and which led to the discovery of kidney cancer.  Now my life is filled with kidney cancer patients and their stories, learning more about cancer than I ever thought was possible, and trying to find an ever-larger platform from which I can share the education I have had on this journey.

This journey might be entitled, “Stage IV Kidney Cancer: A Round Trip”, with hope that I have been to Stage IV and will always stayback at home, remembering and not reliving that strange land.  The sheer luck of having found two of the world’s best kidney cancer doctors, one at Mayo Clinic in Rochester, MN and the other at UCLA in California really happened because I grew up in rural (that does not mean a suburb without streetlights) North Dakota.  As a child, I knew my town had a hospital, but often had no doctor. The county nurse who gave us all shots and the chance to see Gail Salhstrom faint every year when she got hers was the only medical “provider” I ever saw.

Most babies were delivered with the help of a midwife, and there were many frantic car rides on country roads and narrow highways to Bismarck, just 145 miles away, and the longer ride to Rochester.  Since that was a trip through most of South Dakota and deep into Minnesota, usually 12-14 hours of hard driving, I am not very sympathetic to people who do not want to cross LA freeways to seek out the best advice and treatment because of traffic issues.

Thus, when my highly-rated internist finally decided that my 6.6 hemoglobin –just half of normal–finally warranted an ultrasound on my liver, to “confirm the patient’s cirrhosis”, and found a tumor the size of baseball pushing my kidney out of place, I was tired of listening to him.  Years earlier, a Beverly Hills pediatrician who grew up in Fargo, ND directed the man I would marry to ignore the local specialists and to go to Mayo.  Thus, he avoided becoming a paraplegic, just as an article in the New England Journal of Medicine declared that his surgery was impossible to do, and if done, would be too late anyway.  Good catch, Mayo.

So going to Mayo was a simple choice, and made all the difference.  In short, they took the tumor out, found hundreds of tiny metastases in my lungs, and advised me to undergo the only FDA-approved treatment, high dose interleukin2 (Proleukin), and gave me back my life.

I now dedicate most of my life, personal and professional, to other patients.  No one should have to be lucky enough to grow up in North Dakota to learn of all that can be done for kidney cancer, and indeed for all cancers.  My mission is to help others learn more about this cancer and others, and how to empower oneself and to engage their doctors in their care.

14 Responses to About Peggy

  1. Jill

    I just found your blog. Great thing you’re doing. I’m 35 – I had a partial nephrectomy at 27 for a 2.5cm, clear cell, Fuhrman grade 3 RCC tumor. It was incidentally found on a renal u/s nearly 8 years ago. I’ve had routine surveillance and genetic testing over the last 8 years. I have 2 little girls – so this is something I’ll always think about – and pray for many more healthy years.

    • peggyzuckerman@gmail.com

      Dear Jill, sorry to be so late in replying, but I have had some help with my blog as to updates and so on lately. Thus, I am re-learning how to do this again!
      It is so difficult to face this kind of cancer with young children, as that strikes at the heart of being a mother, and know that it is also a motivation to keep ahead of all the information, stay on top of all your options and so on. I am pleased to know that you got genetic testing, as that is exactly what should be done when someone is so young to be diagnosed. I do keep watch on this, and assume that you do also. If not, let me know and I can forward info re hereditary/genetic issues that might be relevant for you. Hope you are working with some academic center who tracks you as well.
      Even with my own adult children, I worry that I somehow have put them at risk…too late to do anything, but to keep after them to monitor themselves. And to eat well, wear their seatbelts, get exercise and all the good things, but it does continue to haunt. Take care of yourself and give extra hugs to the girls for me.
      Peggy Zuckerman

  2. Jennifer

    On April 6th, my husband, Tom, age 62 had his left kidney removed because of a 8cm RCC. We were told it was a stage 3 because of the size and that there were no signs it had metastasized. On April 7, 2014, he had a large brain tumor called a meningioma removed. Typically, this type BT is benign but because his was large and aggressive with atypical cells, it was classified as a stage 2 and required 6 weeks of radiation. Naturally, we assumed there must be a connection between the two tumors but were assured there is not. Apparently it is just pure bad luck! I guess my question is, in all your research, have you heard of other RCC patients having tumors not related (for lack of a better word) to each other? We are still trying to process the events of the last year and would appreciate any insight you might have.
    Thank you ,

    • peggyzuckerman@gmail.com

      Dear Jennifer,
      The same thing happened to me, and to many others. A primary tumor like RCC does not protect you against a second tumor, though it sure seems as if it should! Not good planning on Mother Nature’s part, or as in my case, I can say I lived long enough past RCC to get another cancer.

      I am confused with your dates above, but certainly hope that your husband is doing well after the brain surgery, and that this was NOT RCC, as that can be more difficult to handle with radiation. RCC is known to be radiation-resistant as is used in most cancers. It requires a more much directed beam approach, which is how brain mets from RCC are treated. At this time, he should be monitored for an return of the RCC, including bone scans and CT scans. Since RCC goes most often to the lungs, some recommend it be monitored with X rays, but they are just not as sensitive as CT scans. My own lungs were full of tiny mets, invisible to the x Rays and readily seen on the CT scan.

  3. name kept private

    Your articles and messages are so informative – I’ve learned more from your comments than from my oncologist!!!
    Thanks and best wishes…

  4. Jennifer

    Hi Peggy,
    I can see where those dates could be confusing! Let me clear it up. Tom had the brain surgery last year in April, and the kidney surgery this April. So, he had both tumors at the same time but the meningioma had started causing problems whereas he never had any symptoms from the RCC so no one knew that was going on too! It was discovered accidentally during an x-ray of his back. He is actually recovering nicely from the kidney surgery but is unfortunately dealing with the after affects of the brain surgery. The radiation he had last summer was for atypical cells from the meningioma. He is going to PT twice a week which is helping but we have no idea how much strength he will recover on his right side. Even though this last year has been a nightmare, we feel very blessed that is has all been treatable so far. He will have a ct scan six months from surgery.
    I want to thank you for all the research you have done and for sharing your knowledge with everyone, it has been so helpful.

    Thank you,

  5. Peggy:
    I stumbled upon your website while researching various cancers on the internet. Wow, I just assumed based on the content of what I was seeing that you were some expert oncologist in the kidney cancer field! This site is incredible. My daughter had a retroperitoneal paraganglioma tumor with mets to the spine. She has the sdhb mutation which puts her at risk for rcc. This is a great wesbite with great resources. Thank you for your doing this!!

  6. Karen Kotzmann

    Hi Peggy, I found your response to a question on a discussion site attached to my Oncologists website here in Orlando Florida. I have been battling RCC since it was discovered accidentally that I had an 11 cm tumor on my right kidney. I am a Nurse and somehow never thought this would happen to me. I underwent a nephrectomy in 2011 and was referred to an Oncologist for further care as two 4mm spots were noted on my left lung. Well its a long complicated story and I am partly at fault but I did not follow he advice to have the bottom of my lung removed and now feel like I am chasing this cancer all over my body. I have had a crainiotomy and two Gamma Knife radiation, IL- 2 therapy which partially worked. Now we are at a Mexican stand off this Cancer and I. I thank G-d that I was in as good health otherwise and fairly strong to undergo all I have. I like you, know more now than I did. As a nurse you would think that I would be and expert, but it really is all new to me. I am looking forward now to the PD-1 drugs being trialed now and going into production. I hear good things about them and have talked to my Oncologist.
    It’s funny that you talk growing up in North Dakota. When i was seven I went with my Air force Dad to Minot. It was an experience. My son has recently married a young woman from a farm family out near Fargo and they spent last Christmas out there visiting. We are from New Hampshire originally and even Ben was amazed at how cold it was.
    Anyway, I am getting long winded, but I have never met a nicer more helpful group of people then those going through the roller coaster Journey of Cancer in any form. Keep up the good work

  7. john smith

    I have read lots of your replies to patients on SP and have always admired your wisdom, knowledge and commitment to others with this terrible disease (i go under Smithbroth on SP).
    Your site here is superb! when i was first diagnosed with KC I was shell shocked, frightened, ignorant of what treatments were available and of what to do! I wish I had been able to find a site like this. Thanks mainly to my family who got to work researching KC treatments (I was given 18 months by my Onc at Leeds) I found out about IL2 and the fantastic work Prof Hawkins was doing at the Christie. I like you Peggy are one of the very lucky ones to have had a complete response (2 years this December). Your blog is a great source of information for the newly diagnosed and for those battling this disease. Well done Peggy x

  8. Fred Martin

    Thanks for your words of wisdom and encouragement. My friend discovered your site while searching for information on RCC.
    I am a 76 year old male living in Tucson, Az., receiving care from the VA. Originally from a small town in South Dakota. Father grew up in rural North Dakota.
    I was diagnosed with stage 4 MRCC after a lung biopsy in July of this year (2015). Oncologist gave me 1 to 3 years
    Right Nephrectomy in August. Pulmonary Embolisms in both lungs in September and Pancreatitis caused by Pazopanib in October after 6 weeks. Now on Sutent, 4 weeks on and 2 off with minimal side effects.
    Now searching for RCC specialist for second opinion, so far, unsuccessfully in the Tucson area.

  9. I have also been following your blogs. Diagnosed with MRCC and mets to both lungs Jan 2016, radical nephrectomy of left kidney Feb 2016, started votrient March 2016.
    After 6 weeks, it seemed to be working, but complications of liver enzyme sky high and jaundiced. Oncologist suggests I start Opdivo rather than other
    targeting drug when liver gets settled down. Will have repeat scans soon. Do you have any thoughts on this or others that have had these complications?

    • I would add another issue to discuss, and that would be whether you would be a good candidate for high dose interleukin. If the doctor dismisses this quickly, ask the reasons, and see if he has had any real experience with high dose interleukin. It seems to work best on generally healthy people (get the liver settled down, of course), and those who have lung mets,clear cell type, and when givenfairly soon after diagnosis and surgery. Since this is an old drug, and was approved in 1992, there are real limitations to the data in that trial, which do not give a true picture of the modern delivery of the drug. It was a Phase II trial, measured only complete response, and partial responses that required a 50% reduction in tumors to be classified as such. Also, there was no consideration of which types of RCC, and the stats indicate that many likely had unusual types, still quite difficult to treat. There were a few deaths in the study, due to infections from the way the patient was kept on central lines, again not the way it is done right now. I feel strongly that any doctor who does not give a fair consideration to this is simply unaware of the current status. If needed, get a second opinion from a doctor experienced with giving it.

      Just as you would not expect the cardiologist to understand every single approach to every type of heart problem, the new tools, the integration of surgery with varying techniques, it is equally hard for the general oncologist to understand everything about kidney cancer, be sure you are working with the right person.

      Opdivo is an immune therapy as well, approved recently for treatment as a second-line. THat trial granted increased overall survival, but was compared to one of the weakest drugs in the second-line category. HD IL2 is still a first line treatment, as is Inlyta and Sutent. All need to be reviewed with your case in mind, your general health profile. I have a blog post about the approval, which will give more details. In general, it is another tool, but not necessarily going to change the world–and we still have to sort out the long-term value of it and other drugs. I am 12 years past my diagnosis, alive thanks to IL2, so am obviously biased to see that patients get the opportunity to have that response!

  10. Mark Bauer

    Wow, so glad I found this. I’m going into the 2nd line phase. Docs says to get off Sutent for 2 wks as a dry out period before trying anything else. Inlyta and Opdivo are in line as well some clinical stuff which I am considering. Would be be great to have all data organized and easily findable about all forms of KC! Keep going! Cri8er4u2

    • Dear Mark,
      If Sutent is no longer working for you, as evidenced by some growth in tumors, this may indeed be the time to go on to another drug. Depending on your general health, age, type of RCC, and so on,you might also want to consider discussing High Dose InterLeukin2 to the mix of those treatments to be discussed. The reality is that few doctors have much, if any, experience with kidney cancer patients, and fewer still with HD IL2, so it is hard to get a fair analysis of the treatment and how you might benefit. Since you mention ‘clinical’ stuff, does that mean you are considering a clinical trial? Happy to help you understand the range of options that might be available there. Peggy

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