Interested in your thoughts

Alyssha

Hi all!  Some of you may remember me - I have posted about my husband Robert before, but it's been a while.  I am looking for feedback on a couple of developments but be nice please  (Yes you John  )

So here goes:

Robert finished his second round of chemo and his first of radiation way back in December.  In January his CEA was down but still at 15.  (Reading some of these other posts make that seem very high! )  Since then there have been many tests, consults, etc.  We were able to go to Sloan but they declined to do surgury - Varicies from Hep C and liver disease made it too risky.- As per Sloans suggestion Robert started Hep C treatment.  They had suggested that if they fixed the HepC that in time the Varices would shrink and we could revisit surgury.  Of course he couldnt do chemo and that, so its been a long time now since treatment.  Had they told us then (March?) that his CEA was already rising, we may have switched the order, but we are far past that now.  It was 18 I think in March or April. (Sorry we are in the hospital so I don't have all my notes with me)

A few months ago the liver dr suggested a diversionary colostomy because his rectal pain was unbearable.  The surgeon declined (this is all at the VA) saying that she didn't think that it would resolve the pain and thus was still too high risk.  The pain was probably damage from radiation so the colostomy wouldnt really make enough of a difference. 

Fast forward.  He finishes the Hep C treatment.  His pain is still grossly unmanaged.  We try for a family trip before he starts chemo but he can't stand the pain.  Hospice is brought in mostly for pain management.  The VA is still discussing palliative chemo.  A few other delays, and finally last week he gets an appt with the onc.  He is on a ton of pain meds and very out of it.  I am certain we are at the end of the road, he doesnt eat or drink nearly anything for days.  We trudge to the onc, (Tuesday) but he is just too sick to even attempt chemo.  They want to do another CT scan.  We go back (Wednesday) and he is too sick to do that too.  (The contrast makes him so ill he hates them)  Thursday comes and he has excruciating stomach pain.  All this time he has been in pain and I have never seen him double over, curled up in a ball on the floor, tears in his eyes.  Hospice says to double his pain meds.  We do.  They say he needs the infusion pump for pain, but he needs a PIC line.  Heaven forbid the VA pay the outside hospital to do it so we trudge down here AGAIN on Thursday.  But he has to be evaluated, and sit in urgent care, and blah blah blah.  They want to do an xray to make sure its not an obstruction.  If it is, he will need to be transferred to the bronx (another hour away) for emergency surgery.  More blah blah blah.  It's not an obstruction, but now its too late to get the PIC and he will have to be admitted.  

Friday am - he gets the pic line.  We think we are going home.  But they seem to think its a national crisis if he gets the pump and wont approve it without trying ANOTHER set of oral meds.  So we have to stay AGAIN to see if the oral meds control the pain.  Since he is there he is convinced to do the CT scan.   New meds, scan done, he rests nicely. 

Sat am - we are going home.  But then the stomach pain happens again - he is beyond miserable.  Can barely get out of the bed. And it's the weekend and no one has a clue.  Lets change the meds AGAIN and monitor for another day.   He feels pretty good the rest of the day. 

Sun.  Same exact thing.  Within an hour of getting up he is in terrible pain.  Can barely walk at all.  Lightheaded, foggy etc.  Same deal.  Lactulose, senna, colace - all the things that he takes 3 times a day for months.  He goes to the bathroom - all loose and watery stool.  Tons of it.  Pain subsides - fine for the rest of the day. 

Now we get to today (Well yesterday now)  I am SO SORRY for the novel but I can hardly ask for input without telling you all this right?

We meet with the dr on call, and the oncologist and the palliative care dr (who we really like).  Actually they are meeting without us and I walk into it.  The oncall has told us that he thinks the stomach pain is the latest tumor.  (he had one in the cecum, and one in the rectum, and the most recent it the splenic juncture?  Or something like that.)  He says the tumor has simply grown to the point that eating triggers a peristaltic  something and that is the pain.  He should get the diversion surgery.  Palliative care agrees.  Onc says well bronx wont do the surgery.  I say - this is totally different - now its a different place, with different pain, that could possibly be relieved by the diversion  Plus its NOT the rectum, so should be less risk.  Onc ignores all of us. 

He leaves and the on call sends an email to the surgeon in the bronx.  No answer yet.  His suggestion is to start chemo tomorrow in the hopes that it will shrink the tumor enough to relieve this pain and he can have some quality of life until his death.  

Now finally - the questions or thoughts I need feedback on.  

1.  My husband and I think it's a bit odd that he had NO stomach pain until Thursday and then horrifying acute pain that then passes.  You would think that if it was a tumor there would be a period of time with lesser symptoms first?   I suggested could he maybe have a virus on top of everything that was causing this stomach issue?  They said extremely unlikely and gave me that look - you know the one - I am clearly in denial of my husbands condition and we should just feel bad for her.  Am I delusional? In regards to this - he has had bowel issues for well over a year and NEVER has there been the foul smell there is now.  I suppose it could be from contrast but I am a mom - I know sick throwup smell vs. throwup.  Know what I mean?  Would the contrast cause that?

2.  We may not hear from the surgeon for days or even a week or more.  Palliative care Dr says to wait and see what surgeon says in case he responds very badly to the chemo.  If it makes him even more sick it could reduce the likelyhood of surgery even more.  But if they are right it will take weeks for the pain to subside, so shouldnt he start asap?  Assuming they will even do it because now the onc is saying he might be too sick for it.  (he tolerated the chemo quite well before, although he was in much better condition) If it was you would you wait?  Give it a go?

3.  Are there other options we should consider?  If the surgeon says no I will certainly ask for a reconsult at Sloan - but that all has to be approved by the va.  He had a hemecolectomy in 2010 and this all started in 2015 with a liver dx.  But he Still 18 months later has a clear liver after sbrt and ablation.   We are still a few weeks from testing the hep c issue. 

His CEA is 31 now.  Hasn't doubled since March or April but close.  The CT scan indicates that the tumors have grown - the worst was just under 1 cm of growth.  In my mind this is fantastic news - it hasnt spread, it hasnt come back in the liver, and there are no new tumors in the colon.  They don't seem to be very happy with it.  But he hasnt had treatment in 8 months!?!  Of course it will grow no?

So that is the story - a lot of it anyway.  I would also like to point out that I brought him food, and he actually ate some well over 2 hours ago, and no stomach pain.  (Peristaltic pain huh? )  Part of me wants to just ignore all these Dr.s - I have virtually no faith in any of them here.  If the pain doesnt return, go with a virus, let him rest for a week and start chemo then.  

Maybe I just needed to dump all that - but I know you all are such an amazing group full of ideas and experiences and resources.  He is not ready to throw in the towel so if he wants to fight I want to help him fight in any way that I can.  If you got this far I thank you from the bottom of my heart!  Wishing you ALL a restful painfree evening.  

Alyssha

Trubrit

Hello Alyssa

Welcome back! 

I am so sorry to hear of your husband's woes, and thus yours. 

I am actually running out of the door to work, but I wanted to take a minute just to let you know that I am thinking of you both. I will send my prayers and good vibes as I work through the day, and re-visit you tonight. 

I honestly don't know if I will have anything useful to say, I will leave that to others. But I do want you to know that you have support and thoughts and prayers. 

Must dash now. 

SUE

LindaK.

C-Diff

Hi Alyssha, has he been tested for c-diff?  The smell and watery stool are indicators.  They should test his stool and then he will be "under quarantine" for the nurses to stop spreading it.  My husband had a few VERY painful episodes towards the end of his life.  One was while he was in the hospital and they said itw as an ileus but did not require surgery.  He did contract c-diff twice at two different hospitals.

My husband was receiving FOLFIRI for his colon cancer that had spread to his lymph nodes in his abdomen.  They caused him a lot of pain.  I would recommend keeping him on the pain pump if at all possible.  The IV Dilauded was the only thing that worked for fast (still about 10 minutes) relief.  He did get on the pain pump at the hospice facility he passed away in.  It was a godsend really.

I hope you get some answers and stop getting the runaround.  It's so frustrating.  Getting anyone that sick or in pain to drink all that prep is just torture.

I'll be thinking of you and hoping to hear some good news soon

Linda

SERRIN

too inexperienced to offer

too inexperienced to offer advice but I will pray for you and your husband. May the rest of his life be pain free. God bless you both.

Alyssha

Trubrit said:

Hello Alyssa

Welcome back! 

I am so sorry to hear of your husband's woes, and thus yours. 

I am actually running out of the door to work, but I wanted to take a minute just to let you know that I am thinking of you both. I will send my prayers and good vibes as I work through the day, and re-visit you tonight. 

I honestly don't know if I will have anything useful to say, I will leave that to others. But I do want you to know that you have support and thoughts and prayers. 

Must dash now. 

SUE

Thanks Sue

One of the things I appreciate most about this board is everyones compassion and their responses.  It's a simple reminder that we are not alone.    Thank you

Alyssha

LindaK. said:

C-Diff

Hi Alyssha, has he been tested for c-diff?  The smell and watery stool are indicators.  They should test his stool and then he will be "under quarantine" for the nurses to stop spreading it.  My husband had a few VERY painful episodes towards the end of his life.  One was while he was in the hospital and they said itw as an ileus but did not require surgery.  He did contract c-diff twice at two different hospitals.

My husband was receiving FOLFIRI for his colon cancer that had spread to his lymph nodes in his abdomen.  They caused him a lot of pain.  I would recommend keeping him on the pain pump if at all possible.  The IV Dilauded was the only thing that worked for fast (still about 10 minutes) relief.  He did get on the pain pump at the hospice facility he passed away in.  It was a godsend really.

I hope you get some answers and stop getting the runaround.  It's so frustrating.  Getting anyone that sick or in pain to drink all that prep is just torture.

I'll be thinking of you and hoping to hear some good news soon

Linda

c-diff

I did finally get a nurse to agree to ask about c-diff that didn't look at me like I was crazy, but it never happened.  Honestly he is feeling SO MUCH better today I am really thinking he just picked up a stomach virus on top of everything else.   He actually insisted they start chemo today which was EXTREMELY unexpected to me!  They started him on Irinotecan (new to him), 5FU which he had last time and the Leucovorin.  His pain for now is controlled with the new medication regimen, but we also now have the pic line in place so we can always switch to the pump if we need to.  They will continue to pursue the surgery option, but for now he just has to get thru chemo and hopefully maintain his weight.  I am sure he is grateful that the CT scan is over - it won't be something he wants to do again for a long time.  Thanks Linda!

beaumontdave

The VA anywhere is too slow

The VA anywhere is too slow to suit me. My Pop loved the place and they did treat his colon and prostate cancers, as well as all the other smaller stuff, like the time he put super glue in his eyes, because his wife put the similarly shaped bottle in his bedside drawer, where he kept his eyedrops. Anyway, if your husband's poor enough for Medicaid and old enough for Medicare, I'd get him to a better facility and doctors. Besides that, it sounds like they're saying that the peristaltic movement [ the muscle contractions of the digestive tract] combine with the tumor to cause some of his pain. I'd defer to them on that, but with meds he's taking, I'm suprised his intestines are moving at all. Enough opoids can paralyze all bowel movement. Thirdly, people here talk about the pain and damage that radiation does to the rectum, so I believe that's all true. People I know with sensitive systems have gone from zero to agony after certain foods have been eaten, I don't know, but it doesn't sound viral to me. Smells change based on the flora in the intestines, among other reasons, so there could be bad bacteria in there, messing things up, as Linda suggests. Fourthly, my CEA went fom 6 to 17 in about a year, and 17 to 44 in about 2 months, so given that it's different for each of us, I don't think there's a lot of useful conclusions you can make from that. My original colon tumor was over 5cm, the last one in my liver was 3.2cm, so yeah, if 1cm was the biggest of the tumors, I'd feel some comfort in that, it should allow time to deal with the HEP-C, but they are his doctors, and I'm a guy on a laptop, on the other coast. Varices are dangerous things, and their shrinking should help a lot, towards making surgery a possibility. The bottom line is I'd contact Sloan, and start a conversation now, you have nothing to lose, but a little time. Find out what the other options are. Long term, it's got to be better transitioning to a top cancer hospital, especially with all the complications of Robert's condition. Finally, I don't know what to think about his pain level and treatment. I know patients get to the point that most pain treatments stop being effective enough and need to be changed or augmented with other therapies, diet changes, and even things like biofeedback stuff, but older guys, me included, tend to resist things that don't come easy, like a pill does. I wish you calmness and patience in this fight Alyssha, and peace and comfort for your man............................Dave

LindaK.

Alyssha said:

c-diff

I did finally get a nurse to agree to ask about c-diff that didn't look at me like I was crazy, but it never happened.  Honestly he is feeling SO MUCH better today I am really thinking he just picked up a stomach virus on top of everything else.   He actually insisted they start chemo today which was EXTREMELY unexpected to me!  They started him on Irinotecan (new to him), 5FU which he had last time and the Leucovorin.  His pain for now is controlled with the new medication regimen, but we also now have the pic line in place so we can always switch to the pump if we need to.  They will continue to pursue the surgery option, but for now he just has to get thru chemo and hopefully maintain his weight.  I am sure he is grateful that the CT scan is over - it won't be something he wants to do again for a long time.  Thanks Linda!

Stents

That's good to hear he is feeling better today!  The chemo he is now receiving is what my husband also had, they call it FOLFIRI.  My husband also had extreme constipation and the FOLFIRI mix actually kept him pretty regular.

Some of the pains my husband had in his belly were from the lymph node tumors pressing on his bile duct and duodenum - he had two procedures to place stents there that gave him relief.  Hopefully the CT scan will show the doctors things they can help him with, either through chemo, surgery or stents.

The pump my husband had in hospice was what they call "sub Q" which means it is just under the skin and can be moved easily.  They said they found it gave relief quicker and easier.

I hope things are looking up.  Will he stay in the hospital for a while now?

funshine

sounds like it was c dif

I had c dif, which is very painful and hard to get rid of. He probably caught it from the hospital which it is very easy to pass it along

Glad he is feeling a little better, its scary when you dont know what it is and how to stop the pain.

lizard44

Alyssha, how is Robert today?

After reading about  his recent pain and troubles in your  original post, I was so glad to see he was feeling better a few days ago  and hope he is still doing as well now he's on the FOLFIRI.  How are YOU doing? Please take care of  yourself.

Grace/lizard 44

Alyssha

beaumontdave said:

The VA anywhere is too slow

The VA anywhere is too slow to suit me. My Pop loved the place and they did treat his colon and prostate cancers, as well as all the other smaller stuff, like the time he put super glue in his eyes, because his wife put the similarly shaped bottle in his bedside drawer, where he kept his eyedrops. Anyway, if your husband's poor enough for Medicaid and old enough for Medicare, I'd get him to a better facility and doctors. Besides that, it sounds like they're saying that the peristaltic movement [ the muscle contractions of the digestive tract] combine with the tumor to cause some of his pain. I'd defer to them on that, but with meds he's taking, I'm suprised his intestines are moving at all. Enough opoids can paralyze all bowel movement. Thirdly, people here talk about the pain and damage that radiation does to the rectum, so I believe that's all true. People I know with sensitive systems have gone from zero to agony after certain foods have been eaten, I don't know, but it doesn't sound viral to me. Smells change based on the flora in the intestines, among other reasons, so there could be bad bacteria in there, messing things up, as Linda suggests. Fourthly, my CEA went fom 6 to 17 in about a year, and 17 to 44 in about 2 months, so given that it's different for each of us, I don't think there's a lot of useful conclusions you can make from that. My original colon tumor was over 5cm, the last one in my liver was 3.2cm, so yeah, if 1cm was the biggest of the tumors, I'd feel some comfort in that, it should allow time to deal with the HEP-C, but they are his doctors, and I'm a guy on a laptop, on the other coast. Varices are dangerous things, and their shrinking should help a lot, towards making surgery a possibility. The bottom line is I'd contact Sloan, and start a conversation now, you have nothing to lose, but a little time. Find out what the other options are. Long term, it's got to be better transitioning to a top cancer hospital, especially with all the complications of Robert's condition. Finally, I don't know what to think about his pain level and treatment. I know patients get to the point that most pain treatments stop being effective enough and need to be changed or augmented with other therapies, diet changes, and even things like biofeedback stuff, but older guys, me included, tend to resist things that don't come easy, like a pill does. I wish you calmness and patience in this fight Alyssha, and peace and comfort for your man............................Dave

Thanks Dave

I appreciate the reminder of how hard it is for "older guys" to accept the other modalities of healing.  It's frustrating to me because I have done a lot of other types of healing and its been very effective to me.  It's easy for me to say - well why wouldn't you want to try ANYTHING?  But I have to remind myself that I am not in his shoes and have not lived his life.  He has had a lot of trama and dissapointments so he is not quite as enamored of the universe as I am  

I don't actually think it was peristaltic pain - because he has eaten many times now without the pain.  I am sure the tumor is part of the pain problem, but I also think they just don't know and it was the only answer they had.  Unfortunatly because all his health care is covered by the VA he cannot get Medicaid- its very frustrating, however in the past we have been able to get a referral to get a second opinion at Sloan so that will be the next plan after chemo.  He will do treatment 1x a week for 8 weeks and they will test if the CEA has changed at all.  By that time we will be able to check the Hep C results, and probably get another PT scan and reevaluate.   For now the VA surgeon won't even talk to me, but don't you worry - when the time comes Someone will   

Hopw you are doing well Dave!