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phils1950's Message Board Messages

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On Apr 06, 2019 2:51 AM jb2sea wrote:

What are opinions on the top places in the US for cutting edge colon cancer treatment?  A Top 5 list, for example.  I've been surprised that it is so difficult to get this information.  About all I have seen so far is the USNWR ranking of cancer hospitals.  

Look for a good oncologist that specializes in colon cancer rather than the hospital.  Your treatment is only as good as the physician is.  A cancer center does not order the treatments the doctor does.  If you choose a good doctor then you will get the best treatment for your cancer that is available.

On Apr 06, 2019 2:51 AM jb2sea wrote:

What are opinions on the top places in the US for cutting edge colon cancer treatment?  A Top 5 list, for example.  I've been surprised that it is so difficult to get this information.  About all I have seen so far is the USNWR ranking of cancer hospitals.  

Look for a good oncologist that specializes in colon cancer rather than the hospital.  Your treatment is only as good as the physician is.  A cancer center does not order the treatments the doctor does.  If you choose a good doctor then you will get the best treatment for your cancer that is available.

On Jul 10, 2019 10:05 AM anonymous_2018 wrote:

Hi,

It's great to hear you're doing well 5 years in. My dad had his complications as well, the worst being an early onset of pneumonia 2 weeks after his chemo was over. He has his CT scan appointment 2 weeks from now and his colonoscopy in September. I just hope all goes well. His CEA levels are decreasing but they're still relatively high. It was around 4 before his surgery and then went up to 9 during chemo. A motnh after his treatment was over, it went down to 6. I heard it's not a very reliable indicator though. His scans have been normal so far. 

Stay positive and keep up the fight. 

CEA level only lets the doctor know that if it is increasing that it should be looked into further for the cause.  It is not ann indicator of cancer but a sign that something could be wrong.  My CEA only went down to 4 once and has been around 5-6 ever since.  All scans and colonoscopies have been clear.  In fact they want me to wait 3 years for my next colonoscopy.  I said I would wait 2 years if all else is normal.

I was diagnosed in Feb. 2015 with stage 4 colon cancer with mets to paralymphatic nodes.  I had 12 rounds of Folfox and now I am cancer free.  Cea  is anywhere from 4 to 6 but oncologist is not worried about that.  I have eliminated soda with the exception of ginger ale for upset stomach.  I am receiving maintenance chemo which consists of Leucovorin and 5 FU. only.  It's not harsh at all and I am only taking a minimal amount of anti nausea meds.  Do everything I want to do and stay as active as  can.  I will be 75 next month.  My oncologist is trying maintenance since it is being tried to prevent cancer from coming back  So far so good for me.  I recommend that if maintenance chemo is recommended jump on the chance to receive it.  Good luck to your father.  Help him keep as active as he can be.


I wouldn't worry about the top 5 cancer centers I would look for the best doctor.  I go to Abramson  but their reputation is not why I chose them.  The oncologist I

have is very on top of all treatments and is willing to try whatever is necessary.  He has a lot of resources available to him and is not afraid to use them.

i DIDN'T HAVE A REVERSAL BUT DID HAVE ABOUT HALF OF MY COLON REMOVED FOR COLON CANCER.  i NEVER HAD DIARRHEA BEFORE THE SURGERY BUT i DID HAVE A LOT OF IT FOLLOWING SURGERY.  i WORKED WITH MY SURGEON AND i NOW EAT 2 METAMUCIL WAFERS FOR INCREASED FIBER IN MY STOOL BUT i ALSO TAKE 1 lOMOTIL DAILY.  iT HAS WORKED QUITE WELL FOR ME.  iMMODIUM NEVER HELPED MY DIARRHEA.  HOPE THIS IS OF SOME USE TO  YOU.  WHAT WORKS FOR SOMEONE DOES NOT ALWAYS WORK FOR ANOTHER.  GOOD LUCK

Hi Raymond,  I was diagnosed in Jan 2015 with stage 4 colon cancer with mets to the para spinal lymph nodes.  Mine was found because I had pain in my back.  The original diagnosis was stage 3 because only 1 lymph node was involved.  Aftwter 6 rounds of chemo the PET scan showed all was clear.  I finished the original 12 rounds of chemo  and was all clear.  My oncologist is very aggressive about treating this disease and I am receiving maintenance chemo until whenever I have decided enough is enough.  I am 3 years into remission and feeling and looking good.  The maintenance chemo is very tolerable just a nuisance.  One half day every every other week and then on my merry way.  Stay positive.  The original 12 rounds can be rough.  Everyone tolerates chemo differently.  Good luck, prayers and hugs your way.  I am from the pittsburgh area but live in the Philly area now.  I know UPM

C very well.  I worked at Children's Hospital for a couple of years way back in the late 60's.

i am currently working on my third year of remission from stage 4 colon cancer.  My cancer had spread to my paraortic lymph nodes and I wAas very fortunate that the chemo was all I needed to get into remission.  I had Folfox for 10 treatments and then 5FU with leukovorin from then on.  My PET scan has been clear since the 6th treatment.  I read some very good articles by Dr. Axel Grothby of the Mayo clinic.  His articles gave me the will to keep on when I thought all was lost.  My oncologist is thrilled with my progress.  I was never told my treatment was palliative.  When my 12the treatment was over my oncologist put me on maintenance therapy.  I receive 5FU and the Leukovorin every other week and will continues this as long as the cancer doesn't come back.  I don't like getting the medicine as I feel very tired for a couple of days but that is a small price to pay to not have cancer.  By the way there is a very strong history of cancer in my family .  Bot of my parents families have had a lot of cancer.  By the wY i WAS DIgnosed at the age of 70 and still very active.  Your mother needs to keep active and think positive.  I know how hard staying positive is.  Good luck.

RE: New to this..

by phils1950 - November 16, 2017

Hi  I am a stage 4 colon cancer survivor.  In remission for 2 years now.  My oncologist has me on the 5Fu for maintenance and I can stay on it as long as my body tolerates it.  I am scared to quit taking it.  The odds of surviving stage 4 colon cancer are not too good.  My scans and colonoscopy were clear and I see the oncologist tomorrow when I get my 5Fu.  3 lymphnodes in my back were the reason  I was staged at 4.  They were gone with my first PET scan  after 6 treatments.  I had Folfox for my treatment.  Hang in there .  The way I feel about maintenance is that if receiving the med every 14 days is going to keep me around then I will do this for as long as I have too.  If it is for the rest of my life so be it.  I want to be here for a long while and I am not ready to leave this world.

I totally understand where you are coming from.  My 47 year old son passed away in August from recurrent colon cancer that had metastisized to his liver and lungs.  His chemo was working well for one year and then just quit working.  His oncologist started a new chemo drug and he did radiation therapy to try to shrink the tumor in his lung.  Needless to say it didn't work.  However our oncologist, family doctor were very supportive and listened to him and did try their best to help him.  Our problem was with the pulmonary doctors and anyone else involved in his care.  Pulmonary doctors from the very beginning would tell him we will keep you as comfortable as we can. When you encounter these doctors and their attitudes it just makes you wonder why they chose this profession.  It is difficult enough to get through a day let alone deal with these attitudes.  I am also a stage 4 colon cancer person and I am dealing with a brain damaged husband who requires 24 hr care.  I do this by myself as I don't feel anyone can care for him better than me.  I hope you can find a doctor more suitable to your needs and can meet those needs satisfactorily for you.  

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