Spongebob & Others Need some advice PLease!

sallyjoy

HI all... Been a while since I've been here. Came on board in 2004 when hubby was dx with stage 4 CC - one met in the liver. His father had it also stage 4 - I remember you, Spongebob because you had the same HNPCC dx. (hubby also has RA) Anyhow, HUbby had colon resection, them chemo FOLFOX & Avastin for a couple months, then liver resection all in the same year (2004) Took out 60% of his liver. (Hubby was 41 at time of dx). Anyway he opted to not have any more chemo after the liver resection and I supported him as we both felt he had had quite enough for one year.
In August 2005 he had another major abdominal surgery for adhesions (scar tissue) that wrapped around his bowel, but he was still NED. 2006 was a much better year for him with only the arthrtis causing problems... This year was great until the end of June.. Routine CT scan showed another tumor (recurrence) in hubbys liver. Same day we found out his dad's had spread to his bones... Quite a tramatic day for us. Hids dad did chemo - all of the combos - off and on for 5 years... there was nothing more they could do. He really wanted more chemo... very sad..
Anyway hubby wisked off to Johns Hopking July 122 for 2nd liver resection. Thankfully dr was able to remove the tumor - was very tricky. He had clear margins but there were very small margins... but no other visible signs of cancer. Thank God. So while hubby recuperates, we visitedhis dad often, but alas he did not last long and passed on August 7th. Another very tragic blow for us as he was always our inspiration. He made this beast seem like a chronic condition rather than a death sentence...
Now the real reason I am writing. Hubby started chemo again last week this time FOLFIRI with avastin. He just hates it. The dr recommended 4-6 months and hubby just doesn't see himself doing it. he is already talking about quitting it after only one treatment. He knows and we ahve talked about the fact that the cancer came back to his liver means there is cancer cells somewhere in there floating around and his chance for a cure lies in chemo, yet he doesn't feel he can do it. His dad weighed maybe 70 lbs when he passed and it was very hard to watch his progression... I don't know how to help my hubbby. He's not very social so a support group is out of the question - he's rather shy... I'm afaraid if he quits the chemo - then it'll just be a matter of time.... How to I help him thru this? He has 4 sons (only one with me) and we want him around Our boy is nine and terribly protective of his dad.
Spongebob, (or anyone else in similar situation), did you have any recurrences? How did yo make it thru chemo. How many times can they take out part of your liver?? Any advice is greatly appreciated. Sorry if this brings anyone down, but I'm in a prettty down place right now. I just want hubby to be well... I want him around when our 9 yr old grows up. I actually thought he had it beat, going 3 yrs NED. Cancer actually was not an evryday thought anymore and it was good as 3 yrs ago it consumed evryday of our lives and now this setback just blew us away...
Thanks for letting me vent. God Bless you all.
HUgs,
Sally Jo

shmurciakova

Hi Sally Jo,
I really hope SpongeBob replies to you today. It's his birthday (see post above) and then I think he's off to Nashville for the Colon Palooza.....
I am sorry to hear about your husband. It is scary to read about because I am approaching the 3 year mark myself. I had a liver met way back in 2003. I had a resection followed by FOLFIRI + Xeloda. Back then Avastin did not exist, so I did not have that. However, the first treatment was the worst one for me due to nausea. After that they got my pre-meds straigtened out and got rid of the Decadron (steroids) they were using on me. I also was prescribed Ativan which I popped during and after the "infusion" so that I just slept through it. Ativan has many uses and I highly recommend it if your husband does not already have an Rx for it....
I did loose the majority of my hair, but now it is back. I was able to work throughout, so I think that helped me to get through it. The day after the treatments, which I tried to do on Friday really stunk ( I pretty much slept all day), but by Monday I was good to go.
I do not have HNPCC and I am sure it behaves differently than other forms of this disease. I also don't know how many liver resections a person can get away with. I had subsequent mets to the right lung which I also had removed, but have not had any more liver issues. I also chose not to have any more chemo following the removal of my lung mets.
I hope your husband can just hang in there. Hopefully he won't have any more problems after this. It is possible you know! Keep the faith and try to think positively. Honestly, it is just a matter of time for all of us and we can only hope we will be around to have kids and watch them grow up. You know? There are no guarantees for anyone. I would think your husband still has a pretty decent prognosis. He could be cured at this point! His fathers story is not his story!
Best wishes,
Susan H.

sallyjoy

shmurciakova said:

Hi Sally Jo,
I really hope SpongeBob replies to you today. It's his birthday (see post above) and then I think he's off to Nashville for the Colon Palooza.....
I am sorry to hear about your husband. It is scary to read about because I am approaching the 3 year mark myself. I had a liver met way back in 2003. I had a resection followed by FOLFIRI + Xeloda. Back then Avastin did not exist, so I did not have that. However, the first treatment was the worst one for me due to nausea. After that they got my pre-meds straigtened out and got rid of the Decadron (steroids) they were using on me. I also was prescribed Ativan which I popped during and after the "infusion" so that I just slept through it. Ativan has many uses and I highly recommend it if your husband does not already have an Rx for it....
I did loose the majority of my hair, but now it is back. I was able to work throughout, so I think that helped me to get through it. The day after the treatments, which I tried to do on Friday really stunk ( I pretty much slept all day), but by Monday I was good to go.
I do not have HNPCC and I am sure it behaves differently than other forms of this disease. I also don't know how many liver resections a person can get away with. I had subsequent mets to the right lung which I also had removed, but have not had any more liver issues. I also chose not to have any more chemo following the removal of my lung mets.
I hope your husband can just hang in there. Hopefully he won't have any more problems after this. It is possible you know! Keep the faith and try to think positively. Honestly, it is just a matter of time for all of us and we can only hope we will be around to have kids and watch them grow up. You know? There are no guarantees for anyone. I would think your husband still has a pretty decent prognosis. He could be cured at this point! His fathers story is not his story!
Best wishes,
Susan H.

Hi Susan and thanks for the input! Half of me hated to post this am. because I hate to sound pessimistic to others - I'd rather give them hope. I know there is still hope for a cure for my hubby and I keep telling him he has it so much better than a lot of stage 4 cc's, including his dad. Last chemo (2004) hubby had FOLFOX which had oxilliplatin which was horrible for him - can't eat, drink or touch anything cold - terrible neuropathy - his dad did this too and his nerve damage ended up permanent. So no OXY this time round. Also last time hubby had all the normal nausea, diarrhea, mouth sores, rashes, but no hair loss. He is really not worried with hair loss, just doesn't like being so sick. He hasn't worked much since 2004 - he gets disability. he was a roofer and with the rhuematoid arthritis and cancer/chemo etc. roofing is out of the question. It's really nasty to have 2 major illnesses like that - if one isn't making him sick, then the other is keeping him from moving... and he can't take most meds for the RA - terrible vertigo and side effects and he cant do the newer meds because they mess with the tumor necrosis factor (Can cause cancer) so he can get very discouraged. Now to top it off we just got a call that his mother was just taken to the ER for chest and arm pain with headache and nausea. She has heart troubles and diabetes but hubby 's not feeling good so we are just sitting here waiting for news on her condition. They say that God won't give you more than you can handle and all that but sometimes I question why he thinks so highly of us... (just a little humor there hehe..) Hubby always told me ya gotta laugh when things do go right but sometimes it is hard.

Oh also hubby does take ativan - I just got a refill for him today, and they definately do help... He does his chemo on Fridays also. With this being his first treatment we just dont know whats normal and whats not. we heard so much about the terrible side effects of diarrhea, he took his med for it at the first sign of a loose BM, but then didn't go at all for 2 days. they another losse bm, meds again then no bm for 2 more days and he says he has terrible belly pain and feels blocked up or like his bowels are shut down... symptoms very similar to when he was 1st dx'd...
Today he seemed OK but now feels yucky and tired.I just wish there was something I could do.. caregivers have it rough too... we can feel so inadequate at times... Well again thanks for the input and I'll keep you in my prayers as well...
Hugs and Blessings,
Sally Jo

spongebob

Ahoy, Sally Jo -

Good to hear from you again. Sorry to hear about the difficult road you and your husband have walked over the past few years. It's a very tough thing for both the patient and - I'm quite sure - the caregiver, too. One thing's for sure, speaking from the point of view of a patient - NOBODY has it worse than you do when it's your head in the toilet!

Anyway, I am doing well and have had no recurrence. But I stick around here at CSN, most will tell you it's for the witty repartee and cool people who inhabit the site, but I also admit that I expect that there may be a recurrence; that's just the nature of HNPCC.

I cannot say for certain, but I seem to recall reading that the liver is one of the few (the only?) organ in the body that can regenerate itself (OK... a little bird just whispered that skin can also regenerate itself...) If that really is the case (I'm about 97.2% certain it is) then I suppose the only limiting factor on multiple resections is how long you can give the liver to grow between "prunings". There are, of course other factors that could limit the effectiveness of resectioning or even the ability to do a resection at all - namely the location of the tumor and the quantity of the tumors.

But it sounds like your husband is doing well and I think understand that his chemo is prophylactic? Is that correct? I have been NED for 5 years now and I don't dwell on the thought that "It's just a matter of time." Yeah, it is the normal course of HNPCC to come back, but you also have to reconsider if it's actually a recurrence or a primary cancer (new). It's imprtant to keep in mind that HNPCC is a chronic illness just like his RA. He shouldn't get down in the dumps over a "cancer death sentence". It isn't - maybe back as late as the 1970's and 80's it was, but not anymore. Remember, the main reason why so many people are lost to colon cancer (it's the number two cause of cancer death) is because it often takes so long to be diagnosed. Your husand has a definite advantage in that he knows what to look for and he knows to always be on guard. What is it they say about early detection? Yup...

Hopefully this has been helpful and hopefully your husband will see that there is definitely the possibility for a happy ending here. He's young and has his whole life ahead of him! Tell him to drop me a note if he wants - I'd be happy to chat.

Oh, and the best part is you have Johns Hopkins as your treatment facility - they ROCK!

Great to hear from you and hope to keep in touch!

Cheers

- SpongeBob (and uaskat)

sallyjoy

spongebob said:

Ahoy, Sally Jo -

Good to hear from you again. Sorry to hear about the difficult road you and your husband have walked over the past few years. It's a very tough thing for both the patient and - I'm quite sure - the caregiver, too. One thing's for sure, speaking from the point of view of a patient - NOBODY has it worse than you do when it's your head in the toilet!

Anyway, I am doing well and have had no recurrence. But I stick around here at CSN, most will tell you it's for the witty repartee and cool people who inhabit the site, but I also admit that I expect that there may be a recurrence; that's just the nature of HNPCC.

I cannot say for certain, but I seem to recall reading that the liver is one of the few (the only?) organ in the body that can regenerate itself (OK... a little bird just whispered that skin can also regenerate itself...) If that really is the case (I'm about 97.2% certain it is) then I suppose the only limiting factor on multiple resections is how long you can give the liver to grow between "prunings". There are, of course other factors that could limit the effectiveness of resectioning or even the ability to do a resection at all - namely the location of the tumor and the quantity of the tumors.

But it sounds like your husband is doing well and I think understand that his chemo is prophylactic? Is that correct? I have been NED for 5 years now and I don't dwell on the thought that "It's just a matter of time." Yeah, it is the normal course of HNPCC to come back, but you also have to reconsider if it's actually a recurrence or a primary cancer (new). It's imprtant to keep in mind that HNPCC is a chronic illness just like his RA. He shouldn't get down in the dumps over a "cancer death sentence". It isn't - maybe back as late as the 1970's and 80's it was, but not anymore. Remember, the main reason why so many people are lost to colon cancer (it's the number two cause of cancer death) is because it often takes so long to be diagnosed. Your husand has a definite advantage in that he knows what to look for and he knows to always be on guard. What is it they say about early detection? Yup...

Hopefully this has been helpful and hopefully your husband will see that there is definitely the possibility for a happy ending here. He's young and has his whole life ahead of him! Tell him to drop me a note if he wants - I'd be happy to chat.

Oh, and the best part is you have Johns Hopkins as your treatment facility - they ROCK!

Great to hear from you and hope to keep in touch!

Cheers

- SpongeBob (and uaskat)

HI Spongebob!! It is sooo good to hear from you!! And so wonderful to hear of your 5 yrs NED!! Thanks so much for reponding and for your encouragment! I read your post to my hubby (he is not a tecno type) and he Actually listened to it... (In the past we had a lot of trouble communicating when it came to cancer as most times he didn't want to be reminded of it or want to talk about it and often he kept his feelings to himself..I, on the other hand felt that knowledge is Power and came here to find answers to my questions and these boards kept me sane for quite some time.. This time though I am finding he is more open to discussing his feelings and I rather like that cause it can be real hell to go it alone inside your own head, if you know what I mean. Anyway, he's not a writer either so I said I'd keep in touch with you for both of us. He was very interested to hear of you having the HNPCC also and that you are both the same age. He is glad to hear you are 5 yrs NED. He says Happy Birthday. I told him about your story about being dx'd and how you asked to have a colonoscopy and being refused only to find out later... well you know the story - it's yours - he sympathises with that because he too knew something was wrong (didnt know it was cancer) but we kept going to the Dr and finally the ER only to be sent home again and again being told "you have irritable bowel, it's your RA meds irritating your stomach, you have diverticulitis, your diverticuklitis meds are making you sick, stop taking them and go home... etc. I finally refused to take him home from the ER. They admitted him and 5 days later we got the news - stage 4 cc - just like his dad which i told them about reppeatedly - it's even there in his med records... very sad... but like you said we know what to look for now. He has already saved his brotther from getting it. (3 brothers had polyps removed after he was dx'd. We also know now to have the kids checked much earlier early 20's) and so they may be spared also from this beast. I was feeling pretty low this morning, but I feel better now. Thanks for listening and being there for all these people. BTW, you are right about the liver - hubby's was fully regenerated by the time of 2nd surgery... He likes your sense of humor too. hubby loves to be sarcastic and can be very funny at times. At any rate you go enjoy being 44 and have a great time in Nashville... Be sure to look us up when you get back cause I think hubby might have more to say by then

Thank you truly...
Hugs and Blessings,
Sally Jo & Lincoln (aka "hubby")

spongebob

sallyjoy said:

HI Spongebob!! It is sooo good to hear from you!! And so wonderful to hear of your 5 yrs NED!! Thanks so much for reponding and for your encouragment! I read your post to my hubby (he is not a tecno type) and he Actually listened to it... (In the past we had a lot of trouble communicating when it came to cancer as most times he didn't want to be reminded of it or want to talk about it and often he kept his feelings to himself..I, on the other hand felt that knowledge is Power and came here to find answers to my questions and these boards kept me sane for quite some time.. This time though I am finding he is more open to discussing his feelings and I rather like that cause it can be real hell to go it alone inside your own head, if you know what I mean. Anyway, he's not a writer either so I said I'd keep in touch with you for both of us. He was very interested to hear of you having the HNPCC also and that you are both the same age. He is glad to hear you are 5 yrs NED. He says Happy Birthday. I told him about your story about being dx'd and how you asked to have a colonoscopy and being refused only to find out later... well you know the story - it's yours - he sympathises with that because he too knew something was wrong (didnt know it was cancer) but we kept going to the Dr and finally the ER only to be sent home again and again being told "you have irritable bowel, it's your RA meds irritating your stomach, you have diverticulitis, your diverticuklitis meds are making you sick, stop taking them and go home... etc. I finally refused to take him home from the ER. They admitted him and 5 days later we got the news - stage 4 cc - just like his dad which i told them about reppeatedly - it's even there in his med records... very sad... but like you said we know what to look for now. He has already saved his brotther from getting it. (3 brothers had polyps removed after he was dx'd. We also know now to have the kids checked much earlier early 20's) and so they may be spared also from this beast. I was feeling pretty low this morning, but I feel better now. Thanks for listening and being there for all these people. BTW, you are right about the liver - hubby's was fully regenerated by the time of 2nd surgery... He likes your sense of humor too. hubby loves to be sarcastic and can be very funny at times. At any rate you go enjoy being 44 and have a great time in Nashville... Be sure to look us up when you get back cause I think hubby might have more to say by then

Thank you truly...
Hugs and Blessings,
Sally Jo & Lincoln (aka "hubby")

Hey there, Sally Jo & Lincoln -

We have our own little HNPCCenclave going on here - my wife, usakat, is ALSO and HNPCCer. We got ours from our moms.

You two have a great day. I'm off to buy some Geritol and prune juice.

Cheers

- SB

jams67

I really don't know much about the HNPCC, but just wanted to say that your husband's chemo aversion is very understandable. Sounds like he is really depressed after dealing with his dad's death, now his mom and chemo each within a short time of the other. Maybe something for depression would help. ??
It is good news to me that the liver can be resectioned more than once. I asked my onc about this after my surgery and she said no. That has now been two years ago so maybe things have changed since then. That part of your letter gives me hope for the future. So all of your post is not a downer.
Chemo is not easy and my husband had to practacally pull me kicking and screaming out of the car to get mine. I know being a caregiver is tough but keep being his cheerleader. Here's a cheer to get you started. I'm sure you can come up with some others that might surpass the genious of this one. Maybe some of you on this board can give Sally some ideas here.

Hold up your head.
Tuck your shirt in your pants.
Come on dear,
You still have a chance.

Jo Ann

sallyjoy

spongebob said:

Hey there, Sally Jo & Lincoln -

We have our own little HNPCCenclave going on here - my wife, usakat, is ALSO and HNPCCer. We got ours from our moms.

You two have a great day. I'm off to buy some Geritol and prune juice.

Cheers

- SB

HA HA! Hubby got a kick out of Geritol and prune juice. You go for it!!! Sorry to hear that your wife has same dx... was that by chance or did you meet after knowiung? Lincoln's maternal g-mother also died of CC and has sisters that died of breast cancer we think - but we still wonder if there isn't a gene on that side of his family also...
OH! BTW, mom turned out to be ok - they kept her overnite for tests and heart attack and stroke were ruled out - sugar was ok, so they don't really know what happened... we think she had a panic attack, which hubby and I have both had experioence with, but we think that's all it was, thankfully. She's certainly been thru alot too and being on her own for the 1st time in her life - well it just all adds up, ya know...

Hubby seemes to be doing fairly good today - so maybe he's on the upswing for this treatment... One day at a time I told him - that's really all we can do. Course he says thats easy for me to say (teasing) but he does seem interested in hearing from you and keeping in touch. I asked him last night if he'd consider a support group and he wasn't too sure about that, but we'll take baby steps for now

Say hello to your wife for us and you have a great day too!

Sally Jo & Lincoln

sallyjoy

jams67 said:

I really don't know much about the HNPCC, but just wanted to say that your husband's chemo aversion is very understandable. Sounds like he is really depressed after dealing with his dad's death, now his mom and chemo each within a short time of the other. Maybe something for depression would help. ??
It is good news to me that the liver can be resectioned more than once. I asked my onc about this after my surgery and she said no. That has now been two years ago so maybe things have changed since then. That part of your letter gives me hope for the future. So all of your post is not a downer.
Chemo is not easy and my husband had to practacally pull me kicking and screaming out of the car to get mine. I know being a caregiver is tough but keep being his cheerleader. Here's a cheer to get you started. I'm sure you can come up with some others that might surpass the genious of this one. Maybe some of you on this board can give Sally some ideas here.

Hold up your head.
Tuck your shirt in your pants.
Come on dear,
You still have a chance.

Jo Ann

Thanks for the encouragement Jo Ann
As for antidepressants, welll we actually have both tried several of them and for some strange reason we are in a small group of people who can't seem to tolerate them . We've tried Paxil, Zoloft, Prozac, remeron, trazadone, lexipro etc...(all in the lowest doses possible) They make me feel all drugged and woozy or they wind me up so tight I feel like a giant panic attack, so they just give me xanax to ward off the anxiety... Hubby gets real strange and tense and wound too tight also so they have him taking ativan for anxiety. Neither are antidepressants, but we do have spiritual support and so far our bouts with depression eventually subside...

On another note, I'm glad you got something out of my ranting... the liver does regenerate and befoer this 2nd surgery I didn't know if it was possible to have a second one either, but it is as long as, like SB noted above, that the tumor is in a location that's operable and there has been enough time between surgeries. Last time they took out hubbys whole right lobe plus some of the caudate lobe - the tumor was in the caudate lobe, but because of the complexity of the blood vessels in the liver they had to take the wholee right side with it. This time the tumor was a little bigger, but still in the caudate lobe. The dr was able tt wedge it out luckily. but he said it was pretty tricky as it was right near his vena cava which he had to take a section of also... but he did it... If anyone out there hears it can't be done a second time make sure it's for the right reasons as noted...

As foor being his cheerleader .... very funny - I'll have to try that - he may get a kick out of seeing me in unifrom he he...
Well thanks again... You guys are just as wonderful as I remembered!

HUgs & Blessings to all!!
Sally Jo

Heider

sallyjoy said:

Thanks for the encouragement Jo Ann
As for antidepressants, welll we actually have both tried several of them and for some strange reason we are in a small group of people who can't seem to tolerate them . We've tried Paxil, Zoloft, Prozac, remeron, trazadone, lexipro etc...(all in the lowest doses possible) They make me feel all drugged and woozy or they wind me up so tight I feel like a giant panic attack, so they just give me xanax to ward off the anxiety... Hubby gets real strange and tense and wound too tight also so they have him taking ativan for anxiety. Neither are antidepressants, but we do have spiritual support and so far our bouts with depression eventually subside...

On another note, I'm glad you got something out of my ranting... the liver does regenerate and befoer this 2nd surgery I didn't know if it was possible to have a second one either, but it is as long as, like SB noted above, that the tumor is in a location that's operable and there has been enough time between surgeries. Last time they took out hubbys whole right lobe plus some of the caudate lobe - the tumor was in the caudate lobe, but because of the complexity of the blood vessels in the liver they had to take the wholee right side with it. This time the tumor was a little bigger, but still in the caudate lobe. The dr was able tt wedge it out luckily. but he said it was pretty tricky as it was right near his vena cava which he had to take a section of also... but he did it... If anyone out there hears it can't be done a second time make sure it's for the right reasons as noted...

As foor being his cheerleader .... very funny - I'll have to try that - he may get a kick out of seeing me in unifrom he he...
Well thanks again... You guys are just as wonderful as I remembered!

HUgs & Blessings to all!!
Sally Jo

When I had my surgery, they told me they can remove all but about 2 percent of the liver. It does regenerate. My slogen was "take my liver, but leave a sliver"