Had my first IV chemo appointment Monday morning
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Hi Leo,
My dad also felt better when he started his treatment as like you said, he also felt like he was doing something to fight back. And he also suffered quite a bit from hiccups at various times, although he never had chemo so we couldn’t blame that for them. I hope that Lainy’s recommendation for Briosche helps you here, but we couldn’t find anything that helped dad as you can’t get that Briosche here in the UK.
Both your trips to Chicago and the Alaskan cruise sound very good indeed and I hope that you and your family enjoy them both very much. Taking things day by dad sounds like a good plan and I hope the cancer psychologist will be of use in this matter.
Best wishes to you and your family,
Gavin
Leo…..I am hoping for these darn hiccups to settle down. Seems that mainly men are affected with it and I wonder why that is? Reading about you searching for a way of telling your little guy about your illness reminds me of a question our Jeff had posed to Dr. Giles. Did you know that we have our very own psychologist on this site? You might want to pose this question to him also. Just a thought.
Chicago sounds great. Although, I go there frequently on behalf of the CC Foundation and attend conferences, I never seem to have time to enjoy the city. I am glad that you have the opportunity to do so.
As Rick has mentioned, beating yourself up over a “possible missed opportunity” only will increase your anxiety. We have seen, on this board, similar treatments for patients and the outcomes varied greatly from person to person. This cancer is so very unpredictable.
Have a great time in Chicago. No hiccups allowed.
Best wishes coming your way,
MarionOh Leo, what wonderful experiences you are going to have with those fabulous trips. Have fun with everything you do.
About hiccups, after Teddy’s surgery, he had hiccups for 7 months. They were
awful and we tried RX after RX and everything in between. Finally we ran into an old friend who is a Pharmacist and he recommended an over the counter solution called Briosche similar to Alka Seltzer. He took 2 doses and never had the hiccups again. You an get it at Walgreen’s or CVS. THe hiccups are not only annoying they wear you out.
We will think of you this weekend as you enjoy all the sights and sounds of Chicago with your family.Leo,
It was good to hear from you. I’m glad that you are started on your chemo so quickly after diagnosis. You’re already ahead of the pack because so many people have a large delay between diagnosis and treatment. And so many others in this group have measurable/larger masses, too.
Your vacation plans sound awesome! I’m following the same philosophy right now and taking a lot of long weekend type of trips. I’ve always wanted to take an Alaskan cruise as well – you’ll have to let me know what you think of it. Spending quality time with your family is such a positive thing. And it’s also great to hear that work is being so accomodating for you!
As for the past treatment choices and wondering whether you should have had brachytherapy – I don’t think you should beat yourself up over this. As I recall, DB and I were at about the same point in the protocol when I was disqualified from it. That really bummed me out because it was like we were teammates and I was looking forward to giving him a big high five at an upcoming PSC conference – and now I will not be making that trip. I am still very happy for DB, but frustrated with my own situation. I don’t know if you are dealing with similar emotions but I think it’s only normal if you are.
Take care of yourself and please keep us updated on how you are doing.
Rick
Leo, I’m wishing you and your family wonderful memories and many journies. I’m reminded of a poplular philosophy: (paraphrasing) Life is not about the number of breaths we take, but about the moments that take our breath away.” There is also, I have found, profound wisdom that comes from the simplicity of children. We only need to listen. I’m sure the trips with your wife and son will be filled with breath-taking insights.
Peace be with you and yours,
Jolenethe 30 minutes turned into 2.5 hours but at least it’s in the past now. I feel a little better if that’s possible. I think it just helps to know that I am doing something to fight this monster.
Work has been wonderfully accommodating to me. They have been very flexible with my comings and goings as treatments have moved along. I am on 5FU daily 2 in the AM and 3 at night. All seems to be going okay so far. I’ve also setup a few vacations with the wonderful prodding of my loving wife.
We’re going to Chicago this Friday thru Sunday so we can show our almost 4 year old son some of the museums we’ve always wanted to go to with him. We’ll be staying downtown within walking distance of the Shedd Aquarium and Adler Planetarium. I’m looking forward to showing him some of my favorite places from my childhood.
I have a little hiccuping from the chemo or steroid (I read a bit about it here before too). I’ll ask about an Rx soon if I feel I need it.
I am still going back and forth a bit on what more could I have done. I found out my friend D (Rick knows who I am talking about) did in fact have brachiotherapy while going through the Mayo Protocol out in AZ but his was more from a learning/teaching perspective and a stab in the dark as his CCA sounds like it was growing similar to mine. In other words, his simply looked like progression of PSC and NOT CCA with the exception of a slightly rising CA19-9 and positive FISH tests.
My wife also convinced me to let her family help so we’re taking a 2 week Alaskan cruise starting soon. I’ll be having an early and late chemo IV session as a result, but according to the docs/nurses, one appointment won’t make a difference and it’s a quality of life issue. My family has always known that I have wanted to do an Alaskan cruise so it’s touching and breaking my heart at the same time.
Our son will be going with us. My wife and I are both not willing to be away from him for very long with what’s going on AND it’s a family journey we desperately want to do together.
Anyway, no more updates from me right now. Just trying to take it day by day. We met with the Cancer Psychologist today and she’s going to help us learn to deal with it and eventually help us figure out how to talk to Henry as saying ‘daddy’s sick’ disagrees with our philosophy. We don’t want him thinking if he gets sick he might have cancer, etc.
Thanks for listening and thank you all for being there for me.
With love and light,
-leo
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