Hi everyone,

I am going to take a page from Bossan and ask everyone for updates on how you are all doing.

DH is still doing pretty good. He is on his second round of Xeloda this week, thru next week. His first round was very easy, 4 pills a day, and he sailed through with no side effects. He started 6 pills a day on Thursday last week and isn't feeling quite as well, but still doing ok. If it will just take care of the lung mets and keep the liver mets from coming back it will be worth it.

My thoughts and prayers are with you all.:) dee

Hi Dee, I am glad to hear your husband is tolerating the meds OK so far. I had a scan for my lymphoma yesterday and my husband had one today for his rectal cancer! I keep making jokes about the fact that I did not agree when we got married that whatever he got, I would get too! That is taking togetherness altogether too literally! We both feel well but who knows! We have to see the doctor tomorrow to get results. I would much prefer that mine is back than his but I cannot make decisions on that!

Take care,

Hi Alison,

Thanks, I too am so glad that this treatment hasn't been too bad so far. I hate to see him sick, it just breaks my heart. I know how you feel, if I could take his illness and let him be well I would do it in a heartbeat. But, like you said we can't make that decision.

I agree, that is taking togetherness way to seriously:jester:. I will say extra prayers that you both get really good reports from your tests. Let me know what you find out. Being able to feel well is such a big plus, especially after having chemo for as long as you did and your husband did. Good luck on your reports.:) dee

I had a routine Cat Scan in January and got the results last week - all clear. What a relief.

Alison I will keep my fingers crossed that you and your husband get good results too. I can't imagine what it must be like for you and Hiswife worrying about your husbands. All I know is that the only consolation I had when I was diagnosed was that it was me and not any of my family.

Love and best wishes to all of you on the board
Lalee

Bossan, CD,ktee
I hope everybody is OK
mikosha

Good news! Both our scans were good. No sign of recurrence for either of us. My husband's CEA was 5 last time and now it is 3.6 so it shows how unreliable they can be. He has to see a dermatologist for a small bump on his back (he did not tell me about it!!) and I still have my little pain in the pelvis, but otherwise we are in good shape. He is coming up to four years survival after diagnosis. He was stage 3C and only had 5Fu/leukovorin as well as radiotherapy, so it is miraculous! He was told today that the chances of recurrence drop considerably after two years and even more after three years.

Love to all,

Great to hear from you all with your positive good news.

I'm still chasing up the possibilities of liver resection or staged resection and found a very positive specialist in Pittsburgh who reviewed my situation (all without any cost may I add despite my protestations to the contrary) and who in turn has referred me to a specialist colleague in the UK. Am awaiting the outcome as I write but satisfied in that something is happening.

Here's power to you all in fighting the good fight.

That is great news! I hope you meet the specialist in the UK soon so you can get on with this!

Allison, that is GREAT news. I know you and dh are very relieved. Now you can both breath and just enjoy yourselves for a while.

Lalee, that is great news about the clear ct scan. I hope they are all like that!

dss12, good luck when you see the specialist. I hope that you can see him soon, it is so hard to just wait sometimes.

mikosha, I have been wondering about them too, hopefully they will check in.

It is so strange how we can worry and wonder about each other without ever seeing each other. Take care everyone and my prayers are with you all.

Come one everyone, let us hear from you.:) dee

Alison - Thats fantastic news. I'm really pleased for you both.

Dss 12 - I hope you hear something soon and that things start moving quickly. Please let us know how you get on.

As well as CD, Bossun and the others, I would like to know how Mudlark is. We haven't heard from her in such a long time so if you are reading this Mudlark please let us know how you are doing

Lalee

You are right, Lalee, we have not heard from Mudlark for a long time. In fact there are several people from whom we have not heard. I wonder sometimes if some feel they become too attached to the boards and decide to take a break. But we need to know how they are doing. I sometimes think I should step back a bit now that we are both doing well, but I also like to come here to give hope and encouragement to those who are just diagnosed or going through a difficult time.

Love to all,

Hi everyone, havent posted in a while . We moved out in the country and it took me a while to get moved in and the computer running. My son has been doing very well.He has been finished with chemo since July of 2006. We really had a rough time making it through with all the infections and everything, but he made it.His last scan was in Dec. His CEA was up to 8 but the PET did not show any activity. He has been doing really well. His weight had dropped to from223 to 160. He has been eating good and he is back up to 210. If everyone remembers that was one of my worst fears, him losing all the weight, I was beginning to wonder if he would start to regain. He has his next check up April 11. We are praying for a good report. Allision Im glad to hear that things are going good for you and your husband. I will keep everyone in my prayers. Everyone on this board has been such a inspiration to me, kept me going when the times were really hard for my son. :wave:

It is SO wonderful to hear from you and that your son is doing so well. This kind of news is always encouraging. Do keep in touch now you are reconnected!

Love,

Hi there, Cats here...

I'm glad to see that everyone is hanging in there. I know it has been a difficult journey for us all. It feels great knowing that you are all still plugging along fighting against this terrible disease.

I am heading home today from a 12 day hospital stay. I had surgery last Saturday to remove adhesions that kept causing me trouble since Thanksgiving. This has been my 5th bout and third trip to the ER because of it...with about 26 days in the hospital since Christmas.

I am anxious to get home today and see my boys - it has been a long haul. Of course the good news in this is that my CT scan was clean and when my surgeon looked around inside everything looked clean and cancer free. YAHOO! Also my CEA was less than one - Yipee!

I am hopeful that I can leave this adhesion trouble behind me and find some sort of bowel regularity and live my life again.

Think of you ALL often and check on you daily! Keep fighting!!

Take care,
Cats

!VIVA LA BOSSAN!!!!!:angel:

It is wonderful to hear from you all.

ccjimenez, that is wonderful about your son. I am glad that he has gained some weight back and seems to be doing well. I will say extra prayers that his scan in April will be only good news.

bossan, it is really good to hear from you. I will say a prayer that you get only good news with your scan on Thursday. Please let us know what you find out. We really miss you and CD, but if you have found a place where you really feel comfortable then you know that we are all very happy for you. Just don't forget about us, stop in and let us know how you are.:D

Cats, I am glad that you are getting to go home today! I will say extra prayers that you will stay clear of adhesions from now on. Great news that the surgeon didn't see anything. You have really had more than your share of problems. Enjoy your boys!!

As for my dh, he is experiencing some side effects now from the Xeloda. I have been rubbing bag balm on his feet and hands (he says I do a better job than he does) and he doesn't have any blisters and only minimal redness. But his feet and hands became really sore Sat. and are worse now. He also has a sore in his nose and his lips are very blistered. Any advice on how to handle the sorness would be greatly appreciated.

I guess this is feel sorry for me day. I am so depressed that I can't think straight and would love to just find a hole to crawl in. I will indulge myself (except when I have a customer) until it is quitting time and then put a smile on my face before I get home. I refuse to let dh see me like this. Take care everyone. My prayers are with you all:) dee

Hi Dee, I know it is hard for you but you are a wonderful support to your dh. I hope you are looking after yourself too. Just to let you know I am thinking of you and sending hugs and prayers your way.

Hi Alison,

Thanks for the kind support, hugs and prayers, I really need it today. DH called while I was home for lunch and said he was making it ok, luckily not having to get off the dozer too much. Our son stopped by and that made me feel better. Tomorrow will be better (I hope :( ) My prayers continue for you and your dh.

I had CT scan last time in mid Dec. Things were great, no signs of recurrance. Just to recap, I was diagnosed with Stage 4 rectal cancer with mets to liver in Mar 2005. Just to recap my last two years, had radition+chemo, then illeostomy & resection, then chemo, then reversal.

Tahb, it is so good to hear from you. I am glad you are doing well. These stories can help newcomers to the board.

Yeah Cats, Welcome home! I hope that you can finally put an end to your many hospital stays and enjoy some good ole quality time with your loving family.:jester:
Larry had his blood work and chest x-rays come back looking good.:blob_fire He didn't let on to me how worried he was until he got the good news. His surgeon did mention the possibility of having his hernia repaired. It is quite large but he isn't having any pain issues with it. It is more of a cosmetic issue right now and is not really noticeable under his chef coats. It is noticeable under his casual clothing but he plans on trying a hernia belt for the time being. I really don't want him to have another surgery until he can loose some more weight. I am afraid that the chances of a hernia repair being successful is not too good for a man of his size.

I send Love and prayers to all, Kathy:wave:

TAHB, wonderful news about your good scan report!! When we hear good news it reminds us that all things are possible.

Kathy, good to hear that Larry got a good report!! I know you were both so relieved. Maybe the hernia belt will help and he won't have to have that surgery for a while.

It is exciting to hear from ones that have been away for a while. It's like going to the mailbox and finding a letter from a friend you haven't heard from in a long time.:blob_fire. There are still some out there, hope we hear from them too.

Hello all,

Background: Colon cancer discovered 8/28/06 Surgery 9/1/06 one node positive, CEA at 17, CT scan finds 3 cm tumor PET positive in right posterior liver lobe. 5 months on chemo, interrupted by a pulmonary embolism over Thanksgiving, horrible eributux rash.... Liver surgery 1 week ago to remove the now smaller 1cm tumor with no new sites, nothing PET positive and a CEA under 1.0
It is a warm Monday evening here and I have all my medicines lined up in a row. Dinner was once again delivered and that is such a blessing. Liver surgery is tougher coming back from as they dissected the liver and flipped it over to remove the 1 cm tumor. No other spots were found even though they had 4 additional suspicious spots.
Now I am 6 weeks off and then 3 cycles of chemo after that. I know at the beginning there were many wonderful people here who understood what I was going through. I feel hopeful as I am NED (no evidence of disease). I went a different path than most (chemo first to see the effect on the tumor and then surgery )and I was sweating more tumors showing up.
God bless all of you. As a 48 year old dad (birthday a couple of weeks ago), I feel like I might see my kids graduate high school.
For liver surgery, I was suprised how low my appetite is, how gummed up I feel (I do get stool softeners) and how painful the cut and drains were. They used glue to sew me up with other sutures under the skin
thanks to all

Happy, belated birthday impactzone. I am happy to hear that your liver surgery was successful, NED is wonderful. You will start to feel better. DH has had two liver resections and he bounced back pretty quickly. Just don't try to rush it. I will say extra prayers that you will feel better really soon.

Take good care of yourself.:) dee

Just a quick update. I know I'm not on the boards as much anymore, but you are all often in my thoughts and prayers.

I had an all-clear colonoscopy in September '06 (which I think I posted about) and last month I had a ct scan that also came out all-clear! My CEP levels are normal, and my doctors are all very cheerful around me! I'm down to seeing them every three months versus every day/week! What freedom!!!

I still have to watch my food intake like crazy (and take immodium when that doesn't work the way I think it should) to maintain "normal" bowel movements, but day by day I can really sense them getting better. I'll probably never be where I was, but this is definately live-able. The most annoying part is that so much takeout food is deep fried, and deep fried and my colon do not agree!

Best wishes for everyone, and I'll check in again soon.

~cinda

It is good to hear from you, Cinda and to know you are doing well. Just one comment....deep fried food is not good for you any way!!! So your colon is telling you something. Funnily enough, since I was dx with lymphoma last July, my husband (dx July 2003 with stage 111C rectal cancer) and I had no take away food until last Friday when we had a well known deep fried chicken take away. I thought it would be wonderful after all this time but guess what? We did not enjoy it at all! Ah well, back to the daily home cooking!

Larbo's Wife -- Hi! I hope L get's the hernia taken care of! That sounds uncomfortable! I am glad that things are well otherwise. It is good to hear from you. How is he managing w/the bms? I know he and I had our reversals at the same time...

Impactzone - UGH. You have been through SO much... I am glad that you are in the NED zone now! YAHOO! My thoughts are with you that the big C stays clear away! Sounds like your treatments/surgery are working! Rest up and take the time you need to recover from your recent surgery!

Cinda! :wave: -- Good to hear from you again! I still think of you as my radiation buddy - we were days apart, weren't we? I hear you on the food thing. If I want pizza or someother yummy treat we do take out and bring it home. I've had WAY too many rides home from restaurants that resulted in accidents, or bad cramping wishing I had a toilet in the car. I use lomotil to slow things down, and that does help sometimes. When I am not on post surgery restrictions I find fiber cereal helps keep things bulked, which is much less messy. Still having occasional night accidents, which is annoying - and gross. Overall, though, things are OK. I am learning to live with my new state of "normal."

Great to hear from you all.
:angel:

Hi Cats, Good to hear from you. Larry has the opposite problem of many here that have had reversals.. He needs to use laxatives and stool softeners daily to keep things moving. We now keep prune juice in stock and he drinks a glass of it every day. He has most of his colon intact. The part that was removed was near the sigmoid colon and most of that was considered his rectum. When he eats lots of fiber it seems to back him up more. It may be the hernia is slowing things down for him.:confused: Yesterday he told me that he occasionally feels as if he sprung a leak at his former stoma site. I asked if he felt burning and he said no that it feels as if he is wet in that spot.:eek: I wonder how many other former ostomates get that feeling and for how long after.
Take care, Kathy:wave:

Hi there,

That is WILD -- what you said about the warm/wet feeling. I get that as well. I have actually put my hand there on several occasions to see if something is leaking out of me. I was afraid it was some type of leak at the anastomosis, but that just doesn't make sense. I think it is some type of phantom ileostomy sensation...

Great to hear from you again!

Take care,
Cats

yup cats, we were days apart for chemo and radiation. Even our surgery wasn't too far off.

Pizza I miss a lot. I keep trying different kinds to see what works (a lot of the time, "grandma pizza" has been good- less cheese aka grease- though sometimes the sauce is too acidic) with my colon.

I know fried foods are bad :( But it was such a nice indulgance that I can't have anymore... sigh. I used to have more accidents than I do now- the fiber definitely helps. I'm past the stage where I feel like I have to know where a bathroom is at all times, so that's progress! Small steps.

*hugs*

Hi again Cinda -

I was just wondering how the post radiation recovery was going. I know you were going to try the Vagi Fem tabs. I am now on estirol intravaginal inserts. They are combined w/vitamin e oil at a compounding pharmacy. This is a bio-identical hormone. I found this is helping a lot. Things are still not great down south, but improving slightly. (Remind me -- didn't you keep your ovaries? Are you in menopause? If I remember right you stored some eggs -- any thoughts on going for the baby now that you are married?) -- sorry for the personal questions... :dizzy: I know how hard all of that was...

Hope you are hanging in there! :angel: