Hi all: Haven't heard from Da Beach Bum in quite some time. Any one know what has happened to him? Is he OK?
Hope we hear from hiim soon.
Thanks to you folks for asking about me :-) I should post more often.
I'm at my sister's place in PA with the dog and have been for a week or so. I'll probably be here through most of the Holidays.
I had a setback starting last last week and my belly got swollen and by Thursday I was hurling like Linda Blair in the Exorcist. They had scanned me Tuesday after my chemo appointment, since I thought I had an obstruction. They said I didn't but it sure felt like it. Friday I went to the Penn ER and was fast-tracked and stayed for two nights. They gave me a version of the colonoscopy flush and monitored me. I'm feeling better now. the consensus was I had hard stools in my abdomen, or a stomach bug.
I missed out on out huge family party on Saturday, which sucked. My other sister and her family flew in from the midwest for it. It's kind of a weird situation I don't know how to feel about. They are quite well-off and have put a bid in for a ground floor condo foreclosure a few miles from my mom's and girlfriend's places "as an investment" and to "have a place near mom for her to stay at when she visits" The plain truth is that it's for me so I am not two plus hours away at the beach. I feel a weird mix of gratitude, love and, well, anger about it. I may have to give up my dog at some point though since like at mosty condos, they are verboten. A few family members have offered to take him.
Sooo... I'm still here plugging away. Skinnier, weaker and more tired than I ever thought possible, but enjoying the good days as best I can surrounded by a great family and with the support of my wonderful girlfriend.
Love and Strength to you all!
Sleeping and feeling like I'm doing a dance as I support my hugely distended stomach while negotiate the rooms of my home. Must say that I honestly cannot complain of any great discomfort, just a lot of hassle more than anything. The most uncomfortable thing is the shortness of breath brought about by the distension.
What are you taking for that?
I find that OxyNorm - sometimes two 5mg doses is needed to ease the shortness of breath so I can sleep.
I know it's a very strong pain killer but I'm not taking it for pain, but for its effect on my shortness of breath and the cough it causes (and which prevents me from sleeping)
The other thing - you brought it up as well - is to take stool-softening laxative EVERY day. Mustn't go a day without it. Just enough to make sure that I go.
Who would have thought such things would have taken on such an importance in life!
I only have a few hours before I must be up to go to chemo. After that, an appoint with the onc. Will find out if this second lot of chemo (Taxol/Gemzar is having any effect yet at all on the CA125) Though only had one and half doses of it till this point. The blood test won't take into effect tomorrow's infusion.
Like you, I'm losing weight also because of the distendedness, but in me that's not a bad thing, and I *am* eating enough.
Thanks for letting us know how you are going. I'm sorry that you missed on the huge family party. I hope something else comes up that will help to make up for it.
Take good care,
Hi Ray! So glad you are OK. It's a rough go for sure. My last MRI showed stability and some reduction of the peritoneum nodules (I just finished 12 treatments of oxilaplatin + irenotecan + 5FU) so I'm off chemo for a bit and now am a candidate for the peritoneum stripping surgery (only done in Calgary here in Canada as far as I know). Before I'm accepted, however, I have to have another 3D CT scan, a PET scan, and laparoscopic abdominal surgery to see if anything else is lurking there other than the 5 nodules. If not, then the big surgery can go ahead; if so, then .... ?
So I am having a chemo-free Christmas/New Year's which feels so good!
Have a Merry Christmas, Ray. And keep posting when you can.
That's good to know Cheryl :)
And as late as my words come, I hope that you and Ray - and all - are getting the most out of this Christmas/New Year Season.
Take very good care,
Westie 66 - Cheryl said you would be a great resource....we just found out that my husband has this..started in his appendix. 3rd chemo treatment done and he's so very tired. Trying to keep his weight up but losing that battle at this point. He's pushing hard to keep going and doing small projects around the house, but this is really taxing. They are steering him toward debulking surgery but we don't know when. The swelling in his abdomen is coming down some and he's having pain and soreness which the doctor thinks is the tumors reacting to the chemo. What do you do for the weak and tired stuff? Everyone tells him protein powder but if he drinks that then he's full and can't eat. What he can eat he only eats small portions...wow..never dreamed when he went in for hernia repair that all of this was going on. Know we're thinking of you and hoping you have many "good" days! Thanks for any tips/advice! Kathy
Hi Kathy: It is interesting that in the last few days there have been several posts on periteneum cancer arising from appendix cancer and the outcomes have been good. See the several posts on this discussion thread today and yesterday. It seems the peritoneum stripping followed by the HIPEC procedure offers a good chance at success.
What chemo treatment is he having? I did 12 treatments of cisplatin/gemcitibine which didn't do much for the peritoneum nodules and then I had 12 treatments of oxaliplatin + irenotecan + 5Fu pump and that seemed to work to stabilize things and even reduce one or two of the cancerous nodules. It is a tougher regime but I came through it without too many problems. The fatigue was a tough one - usually I just went with it and stayed in bed or on the couch just reading or watching videos. But it only lasted a few days. I did walk my dog Charlotte and that helped, even though the walk was slow. I also had a few sips every once in awhile of energy drinks like Rock Star but you have to be careful with that. I never had the abdominal swelling. My major problem was diarrhea because all 3 of the chemicals cause it. That did not respond to any of the traditional treatments like the BRAT diet or imodium or lomotil. So I let it just happen. Again, only lasted a few days.
Re the protein powder. That is OK as it is like a good food. I used lots of fruit and soy milk and whey powder to make really nutritious smoothies. I found they worked better than a meal because it didn't fill up my intestines (which is a problem when you have an incisional hernia!).
Right now every day is a good day with this chemo holiday!
Keep us posted on y0ur hubbie - we're thinking of both of you.
Please check out the other posts, especially on the stripping and HIPEC procedures.