The Colon Club

My DW has had abdominal pain and been fatigued lately, and over the past 3 weeks has had increased bloating in her abdomen, which has contributed to her pain and reversed much of the progress on resuming normal eating after her bowel obstruction in January and subsequent surgery in February. We had an appointment with her symptom management nurse, who did an exam, and decided that she should be admitted to the hospital for testing, to understand its cause and hopefully treat it.

At the hospital she got blood tests, imaging, and medication to help her feel better. When we got the results, the CT scan showed significant disease progression, and metastasis into new areas. It also showed pleural effusion and ascites. She had thoracentesis, where they drained 1.5L of fluid from her chest, and at least that has helped with her shortness of breath. We met with the oncology team, and they had some ideas for treatment. However her AST/ALT are too high (~700/1000) for them to do it just yet. They thought this might be caused by tumor partially blocking a blood vessel in the liver but this has been ruled out by ultrasound testing. If it had been that, at least they could have put in a stent to open the blood flow and prevent further liver injury. Instead, they initiated a course of acetylcysteine, but I wonder if this is just a shot in the dark or whether it will do anything.

One sad thing is that she has not been well enough to have chemo since January, which is what got us to this point, and it's looking to me that it's doubtful that she will get there. Anyone have any words of wisdom on what is going on and where this might be going?

I am sorry and saddened to read this post. Any idea why she stopped her Avastin with her maintenance Xeloda treatments?
I often wonder why I see this in many patient's profiles here and do not know why it is stopped when it worked so well in earlier years.
My thoughts and prayers are with you guys.
WS

WarriorSpouse wrote:I am sorry and saddened to read this post. Any idea why she stopped her Avastin with her maintenance Xeloda treatments?
I often wonder why I see this in many patient's profiles here and do not know why it is stopped when it worked so well in earlier years.
My thoughts and prayers are with you guys.
WS

It’s my understanding that Avastin is withheld prior to surgery or the possibility that surgery may be occurring. It worked really well for me. I came off all chemo for 6 weeks to travel and when I returned I needed emergency surgery for an obstruction of my primary tumor. I was 2 minutes away from a colostomy when my surgeon appeared and said “you’ve been off Avastin almost 7 weeks, I think you’ll do better long term with a resection”...We May not get this chance again. I’m not sure if any surgery would have been as successful if I was still on Avastin. Like all of our drugs, they have benefits and limitations.

In each case where the Avastin was stopped it was either because it was too close before or after surgery, or because she had abdominal pain while taking it with Irinotican. We always wanted it used, but sometimes she could not tolerate it.

I'm sorry your wife is having such a hard time and hope things get better for her soon!*hugs*

Sending my best wishes and prayers for your wife. I hope her pain is lessened and she regains enough strength to start treatment.

Hang in there and keep advocating for her!

Shana

I am very sorry for what your wife is going through ... is targeted, intrabdominal chemo (similar to HIPEC w/0 the jnvase surgery) an option for your wife to at least get her peritoneal disease under control since that is what is causing the ascites?

I remember someone on this board had this done at Memorial Sloane and it kept their disease at bay for a considerable period of time.

She is not a candidate for HIPEC due to mets in other places. While yes, we probably could find someone willing to do it, the risk/benefit tradeoff is not there.

Yep...us too...about 1.5 L drained Monday and again on Tuesday from lungs. Breathing much better but appetite not much.

CT scan also revealed 2 cm growth in 2 liver tumors and also growth of lung nodes since January. FOLFOX done but it worked 18 months.

Oncologist called this afternoon and said DH couldn't handle FOLFIRI at the moment (Bilirubin at 4.5 which he deemed too high) and offered Vectibex. So assuming more blood tests are OK this Friday, he will start that on Tuesday. Is that an option for you all?

My DW is KRAS mutant so Erbitux / Vectabix won't work. They started her on FOLFOX which she has had before, but I have read that it doesn't work too well with peritoneal mets. At least she is able to handle it. She has still has the ascites, which could not be drained from her abdomen due to not having a large enough pocket of fluid. She has pleural effusion and they did thoracentesis to drain that off, which has helped her breathing. She has edema, which is making her legs huge, which diuretics seem to have no effect on. They started her on supplemental oxygen and she will be sent home with it. Plan is to go home tomorrow and continue FOLFOX as out patient if it works.

I'm so sorry for all the challenges your wife is facing right now, edema is awful
I hope she is more comfortable after the thoracentesis and that Folfox will help!

Sending positive thoughts and prayers to both of you.

risto wrote: , the CT scan showed significant disease progression, and metastasis into new areas. It also showed pleural effusion and ascites. She had thoracentesis, where they drained 1.5L of fluid from her chest, and at least that has helped with her shortness of breath... However her AST/ALT are too high (~700/1000) for them to do it just yet. They thought this might be caused by tumor partially blocking a blood vessel in the liver ...ruled out by ultrasound testing. If it had been that, at least they could have put in a stent to open the blood flow and prevent further liver injury. Instead, they initiated a course of acetylcysteine, but I wonder if this is just a shot in the dark or whether it will do anything...

In natural medicine, a number of nutrients have been used to recover liver function, such as N-acetylcysteine, alpha lipoic acid, silymarin, menatetrenone (human K2), ascorbates (C), coQ10, selenium methylcysteine, carnitines, zinc carnosine. The online discussions of Burton Berkson PhD-MD were most useful to me.

IV vitamin C has (pre)cautions for its use with edma and ascites, potential for contraindications, but IV vitamin C has been used to clear edma and ascites cases. IV vitamin C has been used to improve both 5FU and gemacitabine cancer treatment results. I would consult the Riordan Clinic, initially free Q&As on their 800 conference calls on IV vitamin C.

A significant portion of these nutraceuticals have reported cancer inhibiting properties or uses in the right dose and combinations. We've used them all in the earlier years, from pre-op preparation alone, to in combination with oral chemo, cimetidine and celecoxib. Some combinations have various degrees of Kras fighting ability.