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Peritoneal CA secondary to Colon CA

Posted: Thu May 10, 2018 8:48 am
by Cranvo
So a BFF of mine just got diagnosed 2 weeks ago with this. He has had Chrons for the past 10 years and was having colonoscopies every 2 years. His last was 1.5 years ago and started having intense abdominal pain. he went to the ED and found a mass in his transverse colon. The original surgeon wanted to cut him open and take out the entire colon. I found through referral of another Chrons pt whose an RN I work with about another surgeon for a second opinion. This surgeon, who had tremendous great reviews online Did the surgery laparoscopically and took out a foot long malignant tumor. They saw "speckled areas on his peritoneal cavity and ended the operation after realizing its become Stage 4. The surgeon also stated he did see a spot or so on the outside of the liver.
After learning of this, I went to google and learned of HIPEC and then I found this wonderful group of dedicated survivors. Now my buddy was referred to an oncologist from his surgeon The oncologist works across the street from the hospital so this was done out of convenience, and my friend is'nt looking for convenience, he wants to live no matter how faer he has to go.
So after the colon resection, they were going to let him leave the hospital after 2 days. He opted to stay an extra day, im the same ICU room. The next day they decided to do a CT and found fluid and air around the surgical site and kept him there a few days longer on ABX. well low and behold they thought he might be getting an abscess and decided to go back into surgery to place a temporary bag. The surgeon said it was best for this so that while getting chemo, if it did get infected, he would have to stop chemo, then put a bag and wait for the infection to leave before starting chemo again, hence waisting time. Well, low and behold, 2 days later, my friend was positive for VRE! The doctor said it was from an abscess that burst but who knows. Anyway he is getting out today with a midline so he can finish 3 weeks of abx.

Know he is to see his oncologist sometime in the next week, have an MRI and a PET scan and he is talking about HPEC, after I brought it up to him. He has mentioned a Dr at sloan in NYC "Dr Nash" and he was told of another one out of Pittsburgh. Most of these are referrals and Im never crazy about a referral from doctors bc one refers and it goes back and forth.

I am here today to ask for any amazing HIPEC surgeon names that any of you has heard of or used. My buddy lives on Long Island NY and will travel anywhere, even Anderson in Houston. I read about Dr Kane in Buffalo. He of course would go to sloan or any other top hospital, but he needs a second or even 3rd opinion. His current oncologist says that he should do systemic chemo firs, before HIPE, but then he also says he doesn't know too much of the procedure and this is why I want to find him a HIPEC specialist
One last question. My friend is 46 yrs old and besides chrons, no other medical conditions. He was an avid runner before this and has GREAT veins. His "referred oncologist" want to place a port, in his office. I question this at the moment because he currently has awesome veins and they don't roll or hide.....any insight to this also would be great.

Thank you all for taking the time to read this!

Re: Peritoneal CA secondary to Colon CA

Posted: Thu May 10, 2018 11:06 am
by rp1954
No port is usually pretty difficult for oxi- over just a few times bare, or else some aggravation with a Picc line installed in the arm for a while. A few have done okay for longer stretches with oxi- but most going bare stop sooner than later.

Otherwise, without a port, your bff might go mostly with oral chemo, which is possible but not standard by a long shot. Maintenance xeloda (oral) + Avastin (usually a quick IV) is better, is still a placeholder. Basically oral chemo, like Xeloda (capecitabine) alone is not considered strong enough alone for stage IV.

Other mild oral adjuncts have been used quite successfully but most oncologists will laugh at you because they don't follow this stuff closely or at all. We have had to use MDs interested in integrative chemistry and medicine, as well as cancer.

We've utilized:
oral chemo + celecoxib (Celebrex) + cimetidine (for CA199 over 2 at least) + PSK + baby aspirin, plus lots of specialized, high potency supplements. The difference here is that some of these drugs and supplements we scaled back only a week or less before surgery, and some thru surgery (cimetidine). Normal chemo stops 3 weeks before surgery and Avastin stops 6 weeks before surgery. We have managed mCRC well, without Avastin, oxi- or iri- for all 8 years.

We've used IV vitamin C and supplements to (re)start chemo soon after surgery, to damp down common infections, accelerate wound healing, and remove chemo sores. IV vitamin C + old antibiotics work surprising well according to CAM doctors, and our experiences too.

Re: Peritoneal CA secondary to Colon CA

Posted: Thu May 10, 2018 12:25 pm
by MissMolly
Even with “great veins” the benefits of a placement of a port are many.

I have a port although not for chemotherapy purposes. I debated whether to proceed with a port for several months but will admit, in hindsight, that it was a wise decision to have it placed.

Understand that chemotherapy medications can cause necrosis/tissue death if the toxic medications leak from the peripheral vein/artery into the surrounding soft tissue. A port minimizes this concern by using a central line for access where the vein/artery has a more durable collagen profile.

For me, having a port has done away with multiple needle sticks for routine blood draws and IV infusions. I used to feel like a human pin cushion. And long term corticosteroid use had the effect of extensive bruising and soft tissue swelling from IV sites that failed. I am now free from unnecessary additional discomforts.

For anyone needing long term venous access - for chemotherapy or IV infusions for autoimmune conditions or intermittent IV hydration - a port can be a blessing and a friend.

Your BFF is fortunate to have you in his corner. Friendships and emotional support play an important role in helping to face a health challenge.
Karen

Re: Peritoneal CA secondary to Colon CA

Posted: Sun May 13, 2018 1:12 pm
by justin case
rp1954 wrote:No port is usually pretty difficult for oxi- over just a few times bare, or else some aggravation with a Picc line installed in the arm for a while. A few have done okay for longer stretches with oxi- but most going bare stop sooner than later.

Otherwise, without a port, your bff might go mostly with oral chemo, which is possible but not standard by a long shot. Maintenance xeloda (oral) + Avastin (usually a quick IV) is better, is still a placeholder. Basically oral chemo, like Xeloda (capecitabine) alone is not considered strong enough alone for stage IV.

Other mild oral adjuncts have been used quite successfully but most oncologists will laugh at you because they don't follow this stuff closely or at all. We have had to use MDs interested in integrative chemistry and medicine, as well as cancer.

We've utilized:
oral chemo + celecoxib (Celebrex) + cimetidine (for CA199 over 2 at least) + PSK + baby aspirin, plus lots of specialized, high potency supplements. The difference here is that some of these drugs and supplements we scaled back only a week or less before surgery, and some thru surgery (cimetidine). Normal chemo stops 3 weeks before surgery and Avastin stops 6 weeks before surgery. We have managed mCRC well, without Avastin, oxi- or iri- for all 8 years.

We've used IV vitamin C and supplements to (re)start chemo soon after surgery, to damp down common infections, accelerate wound healing, and remove chemo sores. IV vitamin C + old antibiotics work surprising well according to CAM doctors, and our experiences too.

Im with you on this one RP all, except Peritoneal Mets are hard to conquer, if chemo is desired oral medication might be more tolerable .

Re: Peritoneal CA secondary to Colon CA

Posted: Wed May 16, 2018 2:23 pm
by inorganic8
HIPEC surgeons? Dr. Sean Dineen at the Moffitt Cancer Center in Tampa Florida. He did my husbands surgery in January. DH was full of cancer. Now, he is not.

I’ll start another thread with more details, but to answer your question, get thee to Tampa.

Re: Peritoneal CA secondary to Colon CA

Posted: Wed May 16, 2018 9:01 pm
by Canada777
I agree with all miss molly's comments about the port. My DH has had both a picc line and now a port. Although the picc line is easy to remove when chemo is over it was overall more annoying. It's has to be covered all the time when you shower and he was told no heavy lifting while it was in. It also had to be " flushed " weekly which isn't hard but required home visits initially until they would let me do it. The port surgery was easy. With the port there is nothing to cover up when he isn't getting chemo and needs a shower and he has been able to resume lifting weights at the gym.