Follow-up with Surgeon

[marie3B]

Saw Dr. Marshall today.  He said the tumor by the liver had originally been the lymph node there that the cancer just took over.  Pathology shows active cancer in a spot on the small bowel and on one spot in the diaphragm. Same mucinous cystadenocarcinoma.  Will see what Dr. LeLinqister thinks when I see her on the 18th.  I know for sure I do not want the rest of that folfox chemo.  I am open to discuss anything but that.  Being grade 1 I am going to ask about the estrogen receptor drugs. Last time I asked she was not interested. Staples are out and I feel better today.  Marie

[jamiann5]

Hi Marie,
I'm glad that you got your staples out and I'm sorry that the pathology report wasn't what you were hoping.  I am praying that your next chemo will work for you.  
Mom just started doxil on friday and had a rough few days.  She is finally feeling stronger again.
jamie

[marie3B]

Yea, I remember that about flaxseed.  I read that when I first came to the forum.  I wasn't going to try it, just listening to all suggestions. I am going to push the hormone blocking drugs.  I will get names of cancer centers that use that therapy regularly to help convince her.  That is how I got my last chemo.  It was awful, but it was something MD Anderson was trying for mucuinous ovca.  It was great for westajul and I really wanted to try.  I will go armed with questions and all the info I can find.  Yep, Pam, may need to give her your number!!!  Thanks, Marie

[Ramsay14]

Flaxseed oil has plant estrogen.  If you have an estrogen receptor positive cancer I would definitely ask the doctor about the Budwig Diet before starting it.  Soy has plant estrogen too BTW.

[nyc lady]

Why not try Armidex or one of the other drugs....I doubt that it would hurt and imagine if it helps.....push the doctor....or give us her number and we will talk to her!!!!!!

Behind you 100 percent with which ever treatment you choose or don't choose.

Love,
Pam

[marie3B]

Is that the flaxseed oil / cottage cheese idea?  I think I read a little about it.  I will wait & see what my doc has in mind before going into anything new. Thanks, Marie

[maryfdanal]

Have you (or anyone) heard of or tried the Budwig diet? I got on to it through Bill Henderson's book/website on fighting cancer gently. It's a very healthy diet, so can't hurt and is worth a try.I've been on it for 6 months - am in great shape, everything is perfect except still have rising CA125 - so guess I'm not curing the cancer yet, but I figure it's good to be healthy!

[marie3B]

Bad news.  The asparagus option is out.  Seems it has already been disproven.  Wonder if PopEye spinach eating could help? LOL  I am open to chemo options, but grade 1s are so stubborn.  What I am hoping is that she will say it is in  places that it isn't threatening me and that we can watch it for a while.  I don't know.  It is a guessing game for sure.  Love, Marie

[ireneo]

Marie - I read your post yesterday, wanted to write something but just couldn't find the words. Still not sure what to say. I just hope your doctor will be willing to think outside the box and figure out what's perfectly right for you. I really want you to feel better.
hugs, irene

[crecco]

Marie, I am glad that you are feeling better on some part. I know that you don;'t want the chemo but it should help shrink those tumors that you have.
Bohan, I cannot believe what you said, and you agreed Marie! LOL Surely there is something out there that will work.
  Hang in there!
   Love Chris

[Katie116]

I am simply astounded at the medical knowledge you all have. The chemo drugs, the combinations, et al. Marie, I'm glad the staple are out & hope you get a good report from the doctor.

I had a doctor once who said, "You know, most of the time, patients know what is wrong with them, and if we will just listen, they will tell us what is wrong. And most of the time, they are right."

So hang in there & fight for everything you can think of. Put your hands on that docor's face and look into the eyes and say, "Listen to me!" Well, maybe not......

[lvfrogs]

I am sorry to hear that it showed some active cancer, but that it is small is good, I hope. I can't comment on the chemo but I would also ask the doctor about the hormone receptor. You have been given lots of good advice and you sound upbeat and determined. I like that. Tell your doctor exactly what you think. They need to start listening better. Many hugs,
Colleen

[TrudieC]

Marie, I love the determination and attitude.  I'm really tired of doctors not listening and hope you can make this happen and that the next round really helps.

Hugs, Trudie

[marie3B]

The only chemos I have been on are the I/V I/P Taxol & Cisplatin and the Avastin & Folfox.  Everything I read says the grade 1s just don't respond to chemo.  Who knows what she will want to do?  I hope whatever it is allows time for my body to recover more from the folfox before anything new is tried.  Marie

[JC145]

I am always cautious mixing herbs with chemo ... unless OK'd by my MD.

Re: asparagus .. this website covers it all.

http://www.snopes.com/medical/disease/asparagus.asp

Marie:  My MD "throws everything back in the hat" after we have used it.  Could you try topotecan now .. even if it didn't work the last time??  Since we know those tiny cancer cells seem to change all of the time .. could you revisit an old chemo?  You mentioned carbo/taxol.  Anything else?

I was on tamoxifen ... and I am BRCA negative.  We used the tamoxifen when my CA hit 107 but my scans were NED.  It drove the # to normal in 6 months and then it rose slowly for the next year.  

Glad the staples are out .. I remember how great that felt!  Continue to rest and feel better.  Good luck with the MD visit.

Judy

[marie3B]

I am going to demand it be done then.  She told me before the hormone blocker drugs would be the last resort.  I think it is time to pull out her last resort.  Marie

[Ramsay14]

I've never heard of any connection with the BRCA 1 & 2.  The fact that you are Grade 1 makes you highly likely to be hormone receptor positive.  Most low-grade cancers are.

[marie3B]

I did test negative for the BRCA 1 & 2 genes.  Maybe that is a sign the hormone receptor thing doesn't apply to me.  Who knows?  I always have to have something odd.  It isn't enough to have cancer, I have to have this gross mucinous kind!!

[fungirl1011]

Marie, I am so sorry that your pathology was not all that you wanted it to be.  I would definately get to the bottom of why your doctor is not receptive to the hormone testing.  I agree, there could be a valid reason, but you need to get to teh bottomof stuff.  I am keeping you in my prayers.  Love, Kasie

[marie3B]

Jane,  I don't think chemo is going to do the trick on the grade 1 cancer, but I might be willing to try Taxol/arbo.  I do think the taxol/cisplatin gave me seeveral months stable.  I would prefer tryong to see about the hormone receptors. I think I am too chemo toxic right now to handle anymore.

Bohan,  I will look into those 2 things.  I have heard of them, but like much info I have taken in, it got lost in the chemo fog.  

Marie

[bohan54]

Ever heard of curcumin, tumeric extract?  Went to a naturopath today, he was pushing it.

[jane65]

Hi Marie,
My oncologist's associate also didn't advise testing for hormone receptors, he said it's mostly done for breast cancer.
I'm planning to bring it up again to my regular oncologist, every piece of the puzzle is an advantage.
I also heard about the pureed asparagus, I don't understand why eating canned asparagus won't be just as good for what ever reason it's suggested.

I'm so sorry about the areas with the cancer spots, I hope they'll suggest a tolerable chemo for you. You've had a tough time.

I'm glad the staples are out, and you're feeling better.
Jane

[marie3B]

Ramsay,  No.  She hasn't agreed to test me for hormone receptors yet.  I will push for that for sure.  It has been a while since I have asked about it.

Bohan,  I hear ya.  Been lookin at ALL kinds of alternatives.  Neighbor wants me to drink pureed asparagus.  What can it hurt??  Got my Maitake D-fraction capsules back out of the cabinet,  too.  I would eat D-Con before I would put that Folfox back in me.  It works for so many, but for my body it was poisin & torture.  

Marie

[bohan54]

Always good to get that metal out.  I hear ya on the chemo nay say.  I'm almost ready for some crazy Sunes therapy.

[Ramsay14]

I am very curious to know why she wasn't interested in putting you on the estrogen blockers when you are Grade 1.  I would want to get to the bottom of that Marie.  There may be a very valid reason why she didn't want you to be on them, but I would want to know the reason.  Have you been tested for hormone receptors?  Glad you are feeling better.