Adult just diagnosed Stage IV Neuroblastoma
 

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07-05-09 03:18 PM
Morgan
Adult just diagnosed Stage IV Neuroblastoma
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 I am a 35-year old male who was just diagnosed with cancer (Jun 12, 2009) after a biopsy was done on a large mass discovered in my pelvis. It was a CT Scan on June 4th that revealed a tumor over 18 cm long. For the last 3 months its effects on my body had been causing very intense low back pain that had begun to spread from legs to chest. There had been much pain in my low back and groin for almost 3 years but nothing this bad, and now there was trouble urinating and having bowel movements.

I was uninsured and unable to get any type of affordable insurance. I am self-employed and just don't make enough to afford a high monthly or deductible. My fiance and I were to be married the next year and knew her group insurance plan would fully cover me, but we weren't sure we should push up the wedding date for that reason alone-- we didn't expect such a dire diagnosis. Family members were finally able to chip in with cash to get me the tests I needed. 

Once the abdominal CT Scan revealed the main tumor (and a bunch of other lumps, lesions and cysts) my fiance and I immediately pushed up our wedding.

We were married June 10th.
The cancer diagnosis came back as Ewing's Sarcoma on June 12.
I saw my oncologist for the first time on June 17 and was told I was stage IV and should be in the hospital ASAP to begin treatment.
June 19 I was admitted to the hospital, had ureter stents put in both kidneys that weekend and had my first dose of chemotherapy started around the 25th.

It wasn't until the following week that my diagnosis had changed to Neuroblastoma. Additional pathology of my biopsy revealed this.

At this moment, I'm in the hospital, writing from a laptop connected to public wi-fi. I've felt so exhausted this past week and am just now beginning to explore new resources for neuroblastoma. I'm very glad to have found this website. I definitely fall into the minority, being diagnosed with neuroblastoma at age 35, but I hope my explorations will prove useful over time to others who are seeking out info as diagnosed adults or parents looking for additional insights into the experience of neuroblastoma.

You can find my cancer blog at: http://cancercaw.com

07-07-09 04:08 PM
Snoopje
Re: Adult just diagnosed Stage IV Neuroblastoma
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Sending you thoughts and prayers, and huge hugs.

 Did they tell you if it was nmyc amplified?

 

07-07-09 07:41 PM
Mariah1800
Re: Adult just diagnosed Stage IV Neuroblastoma
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I am so sorry to hear of your diagnosis, and I wish you nothing but the best!  I am a 30-year-old neuroblastoma survivor - I was an experimental patient who was not expected to survive.  Due to my treatments, I have had a lifetime of secondary effects that I deal with...including severe upper and lower chronic back pain.  I am so sorry that with on top of everything else, you have to deal with back pain.  I just wanted to let you know that if you are ever laying there, flat on your back with a perched laptop (like I am now), and you want to talk and have any questions about treatments or just want to vent, I am here!  It is hard for me to not be able to work, so I am trying to "make my mark on this world" by being a good friend, communicating in the neuroblastoma internet circles, and writing a book about my experiences in the medical world and providing encouragement, hope and positivity. 

One thing I thought about...if you had lots of medical bills from before you were married, some states provide retroactive medical assistance.  I am not sure if MA is even a possibility for you or your situation, but it was just an idea.  Also, if you are an unable to work for an extended period of time, you may want to apply for disability (especially if you are self-employed!).  I recently started receiving disability, which has really helped with finances.  I am in the process of applying for MA, but I am not sure if I will qualify because of my husband's income.  However, it would really be a big help, and I just thought of this when I read your posting.  Anyway, many congrats on your wedding!!!  And, good luck and god bless!!

07-07-09 07:58 PM
Donna Ludwinski
Re: Adult just diagnosed Stage IV Neuroblastoma
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My son was 20 when he relapsed and got "presumptive" approval fordisability (SSDI) --only took a few months to hear back--and due tolack of resources (have to have less than $2000) he was eligible forSSI which automatically made him eligible for MA (medical assistance inMN) also called medicaid. After 2 years on MA he was "dumped" tomedicare, but thankfully MA is still a secondary payer, and so he hasno premiums, co-pays or deductibles. Everything Medicare denies, MAapproves.We are extremely thankful for this arrangement and provisionfor a "destitute" college student--his travel, meals, and lodging arealso reimbursed by the county. Now he is getting help to pay for school(he is still on treatment --now on oral chemo--for second relapse).

Inever thought I would ever be dealing with "public" programs but I amso thankful for this...it would have been devastating financially to usto pay for every thing the past 4 years (we are 200 miles from thehospital).
07-09-09 06:15 AM
Jennifer Click
Re: Adult just diagnosed Stage IV Neuroblastoma
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Hi Morgan,

I'm so sorry to hear of your diagnosis, but glad you found this site.  I hope you have had a chance to look at the NB Handbook here too.

As you no doubt know, being diagnosed with NB at your age is very rare.  I see from your blog that you are in AZ -- I would really urge you to contact the major NB centers in the US, esp. CHOP and Sloan-Kettering.  NB is a different disease in adults and while it may not be curable (as your docs say) in adults it can often be controlled for quite a while with a good quality of life.  I know people dx in their late teens who have gone on to complete college, etc. but most of them are seen by docs at the major NB centers (there's a list in the NB Handbook). You may be surprised to find how accessible these docs are -- I still remember being *amazed* when I called to schedule a consult and one of the world's leading NB researchers called me back that evening!

If you haven't already, you may also want to join the NBlast listserve at www.acor.org (click on mailing lists and go from there).  Lots of good info and a great community of folks there, including some of the older patients (one woman's husband was dx 5 years ago at age 40).  Finally, the CNCF NB Conference is being held in a few weeks.  If you or any of your family members can attend there is a wealth of information and a chance to talk to many of the leading NB docs one-on-one.  Last I heard there were a few free rooms left and some funds for travel, so check out the registration info on this site.

I hope this helps -- with NB knowledge is power and there is plenty of good information out there if you know where to look.

Best,

Jen Click

Carolyn's mom (dx 1/03, NED 7/03, OT 10/04, treated on N8 at MSKCC)

07-09-09 07:03 AM
Morgan
Re: Adult just diagnosed Stage IV Neuroblastoma
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 Thanks so much to all of you for your responses and support! I appreciate the tips and resources.

 Snoopje, I don't know if my NB is nmyc amplified, but I have made a note to ask my doctor, thanks.

Mariah1800, I really appreciate your offer of a 'venting partner'. I may take you up on that. Great to hear of all the proactive steps you are taking, especially the book. It's a goal of mine to write a book that is also a travel memoir. I am starting the process of applying for disability, and thanks for the tip on MA-- I had not thought about this.

 Donna, thank you also for sharing from Jeff's experiences. It's encouraging to me to know what may be possible for medical assistance. My wife is the sole breadwinner now and as any family member of a cancer patient can imagine, it's difficult for her to do 'business as usual' amidst all this.

 Jennifer, you've provided some resources I'm glad to look into, thanks. I've joined the acor listserve and look forward to catching up on it. My oncology team here in Phoenix, Arizona is Southwest Hematology Oncology -- http://sho.md/physicians/  --Still, my family is reaching out to other centers and doctors as you suggested.

 Writing my latest blog entry tonight ( http://www.cancercaw.com/ ) I was thinking about what I most want to accomplish in the coming months. I have some important goals and these give me hope. I'm already blessed to have my wife and family giving so much support. It makes it that much easier to branch out on projects, dreams, visions-- and finding more friends I'd like to associate with. I'm looking forward to sharing more of what I'll be up to on my blog soon -- bookwriting, documentary film, non-profit group--  it all takes an extraordinary group of people and, well, time. Both seem to be coming out of the woodwork, fortunately.I'm sure my moods and emotional balance will change often, but for now I can't help but feel like I'm the fortunate one.

Thanks again to all of you,

Morgan

07-09-09 11:07 PM
Mariah1800
Re: Adult just diagnosed Stage IV Neuroblastoma
Reply

Morgan:
If you decide to take me up on a venting session, my e-mail address is:
Mariah1800@hotmail.com.

 --Mariah :)

06-15-12 05:13 PM
Lukemcglennon
21 year old with nueroblastoma
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Hi, i am 21 years old and on the 3rd on january 2012 i got diagnosed with a neuroblastoma on my adrenal galnd, i have done my reserch and the only survivors i found are the people who had it at a very young age, i am hopeing they are some of a simaler age to me if there is will you please get in touch and give me some hope thank you, my NB has no MNYc amplification or what ever it is i have had 6 rounds of chemo and waiting an operation, thank you for reading
01-19-13 07:05 PM
Tim
Not alone
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My son was diagnosed with Late Stage 4 Neuroblastoma just prior to his 21st birthday. You're correct about the occurence with young adults and the odds are just as ugly as the cancer. Through the last 23 months we have been living the four F's: Family, Friends, Faith, and Fight. Do lots of research. Ask lots of questions and look at what treatments and trials are available. One of the most important ones that my son ask his doctors was "How many young adults have you treated with Neuroblastoma?" Ensure you have a great oncology team that knows Neuroblastoma. Keep positive. You're not alone.
04-13-13 07:33 AM
Sarenasue
My fiancÚ
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