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An update **Scan Results Added**

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Hey gang,

I haven't posted much recently and wanted to let y'all know that I am ok and what's been going on.

After a few weeks of feeling like crap with a lot of throwing up and a fair amount of fatigue, pain and loss of appetite I have started to feel a lot better. I saw my onc yesterday and was supposed to get chemo afterward. After describing the previous two weeks to her, she decided to have me skip the chemo and moved up my scans to Friday. I will get my next chemo next Friday.

The thinking is that I may have had a partial blockage, or some peritoneal tumor growth. I was concerned that I hadn't lost any weight even though I had eaten very little over the last twenty days or so. I think I should have, but that there was some ascites that built up and offset what I would have lost. At this point it's not enough to warrant a periocentisis and hopefully will go away after we adjust some things.

The good news is that my blood work from the last visit and the preliminary numbers from this visit are all perfect. She thinks that we will probably need to increase my chemo dosages. I have been getting very minimal amounts for the last six months and it did a great job of keeping things in check and minimizing side effects. It also gave us somehere to go with the present regimen if it ever seemed to stop being effective, which may be the case here.

Anyway, I am feeling a ton better than I did last week and am pleased that I can eat pretty well normally again :-) I'll keep you folks posted when I get my results.

Strength and love!

Ray

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI Ray: I'm so glad you are feeling better! Keep us posted on the results of your scan. I'm sure it will be good news. The travelling may have been harder on your than you thought. That is a good idea re chemo - a lighter dose that may do the job but you can always getting a heavier dose later on rather than having to change chemicals.
A question though - not sure if you have a PICC line or Port or just use a regular IV for your chemotherapy, but how did you travel for 2 weeks if it is a PICC line you have without getting it flushed? I'd dearly love to get away especially over Christmas but with a PICC line I'd have to arrange for it to be flushed and that is not always possible in a different location.
Cheryl

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Thank you for your kind thoughts :-)

I have a Port. I got one about a month after I started chemo and am very glad I did. Before that I had a PICC line and it was a hassle with the tubes dangling, even with a gauze sleeve. They made showering more difficult and my crazy mutt thought they looked mighty tempting if they were swinging around.

I had to flush my PICC line daily. First with saline and then with Heparin. I needed to make sure there was blood return as the first step. I was staying with my sister at that point, so someone in the house did it. The Infusion Nurse showed us all how to do it. They gave me a line extension that could be screwed in in case I wanted to do it myself (along with all the other supplies), but I never needed to do that. Perhaps this kind of situation could work for you over the holidays?

If you are getting chemo or other transfusions on a regular basis, I would highly recommend a Port if your doctor and insurance will allow it. Either way, I hope you get a chance to do some traveling when it suits you!

Take care,

Ray

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Ray, I'm glad to find that it's working out for you at present. You remain in my thoughts also.

I will keep your words in mind if I need to go for something like a port when I have chemo in the future.

At present, I'm on a break but the CA125 is going up and chemo is next up when symptoms present.

Take good care,

AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Ray: I did treatment 10 today so only 2 more (hopefully!). Then we'll see what the next steps are. My oncologist is still pushing for the peritoneal stripping surgery but I don't know - seems risky and painful to me.

I have a nurse that comes in once a week to flush the PICC line and she is going to show me how to do it next week.

Happy thanksgiving from Canada (it is ours this weekend) - we've a lot to be thankful for for sure.

Cheryl

Best Friend
Posts: 222
Joined: May 2011

I will just say that i know the stripping sounds scary but my mom got through it and she was so scared. She walked into Penn like so ready though cuz she was hopin they would get as much as they could. She was in the hospital for like 4 days and i mean she was on morphine. We were planning for her to be there atleast like a week or a week and a half. The papers said two weeks to 4 weeks. I was like woah, well i guess that is for complications. She forced herself to eat so she could get her bowels working. She came home walking. Than like two days later it hit her. I took a good three weeks to get to the point where she felt a little like herself. But hey, they remove so much. They shaved her organs. I can't imagine ur insides feeling so great after that. But they got her cancer down to her spleen. That is amazing. I think it will be good for you. It may not cure you but it gives you more time to do things you want to do or spend time with loved ones. I hope everything works out for you. I really do. You must be a strong woman if you have gotten through to this point!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Your mom must be one tough woman! Here in Canada it is done only in one hospital, in Calgary, so you have to be pre-approved and they are very fussy whom they take. The gallbladder peritoneums haven't worked out well they said (which is me) but they have had good success with ovarian cancer patients. Someone on this discussion board had just the nodules removed from the peritoneum which is what I would go for if I could.
Imagine - shaving the organs!
Cheryl

Best Friend
Posts: 222
Joined: May 2011

How would u shave ones organ without making it instantly bleed? I really don't want to know. Well, i hope to God they decide to operate. I mean i know they have restrictions but it's not fair. I was telling my family about how there is only one hospital who does the surgery and if u came here you would have to pay out of pocket. They were shocked. Is this surgery not successful because it's in the gallbladder? I mean they can still remove ur omentum and such. I guess i don't know as much. Maybe they could do a little organ shaving! Sorry, just tryin to lighten the mood! I can't stand sadness these days. Whatever happens, i hope the best!

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Yesterday I got the results from the CT tests I took last Friday. It wasn't the best news, but it could have been much worse.

The scans showed pretty signifigant ascites (which I knew) and thickening of my peritoneal caking which caused the build up. There was no increase in the size of my primary tumor outside my colon or any additional lymph node involvement. Liver, lungs and other organs remain clear.

I had lots of company for this visit! My mom, aunt, sister and girlfriend wanted to come along. With my oncologist, a resident in training and the Nurse Practioner it was me and seven women. It was good since they all had a question or two saved up for the doctor. My onc said we should add Oxalyplatin back into my regimen, which she had taken me off in March because I was doing so well.

I had chemo right after that and my mom and aunt stayed for a while. The Oxaliplatin was going to add hours to the infusions so I persuaded my mom and aunt to go out for lunch and catch the train home. They picked me up a chicken salad sandwich before they left.

It was a good thing they took off because after getting about a third of the way through the Oxy I hurled up the half sandwich I ate and just kept dry heaving. Ten minutes after that I turned beet red and developed an itchy rash all over in a matter of seconds. My throat started closing up and I started twiching. I rang the bell and nurse came right in.

The nurse unhooked the Oxy and gave me a saline flush while she called the Nurse Practioner. She got the OK to give me a shot of Benadryl and the NP showed up a few minutes later and my onc right after that. They also gave me a steroid shot. I was still getting redder and twitching so they did both again. I guess the doc thought I was stressing becase they also gave me Demerol. Things cleared up pretty quickly after that. The doc said they will try the Oxaliplatin again but will I will take steroids ahead of it and some Benadry beforehand. They will halve the infusion rate, which will make for a verrry long day. If my ascites hasn't gone away by then, they will schedule a periocentisis. I got a liter of saline hooked up and took a nap.

I hit the road after that to beat rush hour and it wasn't until I was on the expressway that I was realized I was high as a kite! Luckily it's an easy (but long) run, so I just cranked up the tunes and stayed in the righthand lane :-p

Strength and Love!

Ray

Carolyn68
Posts: 39
Joined: Aug 2011

Today must be the day for reactions. Just read "Reaction" from BEST FRIEND...her Mom had reaction too from cispl. Initially, I had reaction to TAXOL....got just like you...my nurses were there right away....husband there too, he said I was like a tomato! Itchy, my oxygen level dropped....the whole works. Scarey. But, I can never go alone as because of my reaction they gave me pre-med the night before and the morning of chemo. The day I had my reaction, I was there 7 hours, and was suppose to be a 2 hour appt. From then on, they administered TAXOL to me VERY slow. I hope things get better........ you seem to have a positive attitude!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Ray: Yikes, as all I can say to that! I had a similar reaction the first time I got the oxaliplatin (with the other chemicals). I started shaking badly, my right hand/arm kept on jumping up and down, and it felt like my face was going to fall off. I continued the treatment but no way could I drive myself home! I had a glass of cold water and my throat closed. I told the oncologist and he reduced the dosage by 40% and also the infusion rate (now takes about 4.5 hrs). He did not think it was an allergic reaction though, more like a seizure (great!). I have steroids before the chemo starts (along with a lot of anti-nausea pills). I haven't had much of a problem since (finished 10th treatment) except with 5 days of fatigue which I'm in right now. Oxaliplatin is a tough drug to get and I can't wait to get off it. But irenotecan has its own problems. And 5FU. I'm beginning to think that chemo is the treatment of choice because some of these cancers are not well known, like peritoneum and gallbladder, and so why not try it. I'm more interested in surgery to get rid of it!

I'm intrigued by the "peritoneum caking". Not sure what that means and I know you've said it before but I missed it. I have 5 or 6 small nodules spread here and there on my peritoneum but no caking. I know I've asked this before but with "chemo brain" I forget - with caking they can't remove it surgically (whatever caking means)?

Cheryl

belindahill's picture
belindahill
Posts: 144
Joined: Jan 2011

Hi Ray, hope things improve for you soon, the same happened to my husband on his first round, he had a bad reaction and stopped breathing!! He is coping better now. I hope the treatment keeps the ascites at bay for you. Ian's seem to be staying away at the moment. He has ct scan on 17th and results 27th, as you can understand we are both very worried. The only problem at present is swollen calf which goes down after nights rest, I feel this may be a DVT, which we will have to sort out, he only started back to work part time last week. How are you coping other wise? Keep you positive attitude, and all the very best.

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