Jump to content

Stage III and IV survivors


KatieB

Recommended Posts

I met a man at the summit this weekend who is stage IV and running out of options. He "appears" healthy and strong with a fighting attitude and he does not want to give up. He is looking for RFA and other surgical options and doctors open to cutting edge aggressive therapies.

Please respond if it is ok for me to pass along your name and e-mail to this man. Perhaps you will have some information, insight, advice, and recommendations of doctors or facilities around the country who can aid in his survival.

PM me or post a reply here with a yes or no. I really appreciate it and I know he will too.

Blessings,

Link to comment
Share on other sites

Thank you!!

I could still use more survivors in different areas who could help with advice or suggestions on treatment course and recommendations for doctors. This stage IV is not happy with his current medical options and is in dire need of help. He will travel to get the best medical care he can, he just needs to know where.

Thanks again!

Link to comment
Share on other sites

Katie-

Did you see cynical-angel's post in New Treatments on RFA? When I looked into RFA for John a few years ago a lot of places would not take patients over a stage 3-- I hope that has changed now that it is more accepted and no longer considered experimental.

Link to comment
Share on other sites

RY,

I think that is the problem he is facing, but this stage IV survivor WANTS RFA, and no one will do it. On paper, it does make sense for them to try it. The patient is reasonably "well" and of right mind to make the decision to want more aggressive therapies...but the standard brick wall is keeping him from trying to extend his life.

I am looking for info on progressive and aggressive hospitals and doctors.

Whatever we can suggest can only help.

Link to comment
Share on other sites

I'm at Massachusetts General Hospital in Boston, and they told me that they would be very aggressive in my cancer treatments. I am not familiar with all their treatments as I have not had to try them yet, but I do know that when something is not working their theory is to move on, don't waste any time. They tell me all the time that the key is finding the right treatment, we find it, do it, and hang on until it stops working and then we find a new one. I really like that attitude.

I am willing to help in any way I can.

Tracy

Link to comment
Share on other sites

Gosh Katie...I would love to help this man....I know nothing about RFA....BUT...I couldn't think of a better place than to check out JOHN HOPKINS in Baltimore (where I am from)...I know people from all over the world go to JH for many kinds of treatment...wouldn't hurt to check it out...prayers for this man and everyone else too....hope he could get the help that he needs...let me know if I could help in any way... ....gosh...gosh...sigh....love to all ...PamS.

Link to comment
Share on other sites

Gosh Katie...I would love to help this man....I know nothing about RFA....BUT...I couldn't think of a better place than to check out JOHN HOPKINS in Baltimore (where I am from)...I know people from all over the world go to JH for many kinds of treatment...wouldn't hurt to check it out...prayers for this man and everyone else too....hope he could get the help that he needs...let me know if I could help in any way... ....gosh...gosh...sigh....love to all ...PamS.

Link to comment
Share on other sites

Hi Katie,

I would be willing to share in any way I can...We are here to share and support with everything we have..Has he looked into clinical trials? What about Cyberknife, Don M. knows a LOT about this procedure and can fill him in about it.It is used and approved by Medicare and most insurances for Stage IV LC. Have him check it out. Is he in the TX area?

Prayers,

Karen

Link to comment
Share on other sites

He is in the FL area. I think the problem is finding a doctor aggressive enough to do the RFA or other procedure. He is stage IV with mets in spine and brain. He's been treating this as a chronic disease for 3 + years and the options presented to him are limited. He just wants the cancer OUT.

I will write more about this when I have permission. I let him know that there are other survivors willing to give encouragment and advice adn I will forward all of your e-mails to him as soon as I hear back from him.

Link to comment
Share on other sites

I am Stage 4 and had >6 cm brain tumor removed last year..then WBR and oral Temodar. The tumor was too lg for RFA of course...but after initially losing my upper rt lung to this disease..I was game for whatever they threw at me. My doc is Robt Macuinas at University Hospital in Cleveland OH...originally from Mayo Clinic. He is a wellknown neuro w/RFA as well as conventional surgery...and a professor at Case Western Reserve Med School. I've even seen him on TV several times. Perhaps you could get a referral to get another opinion. I don't mean to imply he cured me...but I've lived past expectations.

Link to comment
Share on other sites

There is a very aggressive surgeon at the University of Minnesota. His name is Dr. Madius. He was willing to operate on my Dad, Dad had a very large tumor in his lung and a brain met. Rest of the PET scan was clean. Dad's oncologist advised us against this plan. I will always wonder what would have happened had we got that cancer out of him. This might be an option for your friend.

Denise

Link to comment
Share on other sites

Can't remember where I read this but it was a story about someone with lung cancer that wanted a cyberknife procedure done on mets and everyone she contacted said there were too many mets to do. If I remember it was 5 or 7 well she did not give up and found a cyberknife doctor in Florida that agreed to do it in a couple sessions and all went well. I read this over a year ago so sorry I do not recall all the details but it shows that if you keep looking rather then take the first No you may get what you are after. JanMarie

Link to comment
Share on other sites

  • 4 weeks later...

Sorry that I've been off the board for so long. I've been Stage IV since dx in July 2005, with mets to brain, liver and bones (ribs, vertebrae and hip bones). Had 4 Gamma Knife treatments(similar to Cyberknife) to treat a total of 44 brain lesions. No side effects whatsoever. Doctor Aizak Wolf at the Miami Neuroscience Center is just awesome. He assured me that he will keep my brain "under control". Was there for a follow-up MRI and consult today, and had no new brain lesions. The web address is www.miamineurosciencecenter.com and phone is 786-308-3700.

I researched RFA about 6 months ago, because I thought I might need it for the liver mets. An interventional radiologist in Melbourne, Florida does RFA (Dr. James St. George, phone 321-434-7174). He treated me for my pleural effusion (my in-dwelling pleurx catheter had clogged up, so he did some kind of roto-rooter thing to unclog it, and subsequently removed it when I finally achieved pleurodesis.

For the bone mets, I'm on Zometa, along with regular treatments of Avastin and Alimta. The bone mets are still progressing, but the rest of the cancer seems to have slowed down, so I remain hopeful.

I've been working out, eating well and taking some supplements, and I'm feeling better and stronger than ever. Went white water rafting in October, and will be snow skiing in Canada in two weeks. Life is Good!

Blessings to all,

Kim

Link to comment
Share on other sites

  • 2 weeks later...

yes! In July I was told I have 4th stage LC with mets to other areas and to go home and get my affairs in order, I had about 4 months! That was the 1st doctor, 2nd doctor agreed, those two I fired! The3rd and 4th doctor both told me if i had the will to live and with my faith in God they will work with me! Five month latter I am completly cancer free! I just had a pet scan and theiris no sign of cancer any where , even the doctors are amazed! They told me that I do not even need radation because their is nothing to radated!

http://www.caringbridge.org/visit/pampierquet on my site feel free to read my journal from the first month on! It is not a easy adventure but it can be done! God Bless , Love Pam

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.