Update on me

[raym]

I've been a bit MIA on the boards recently, at least as far as posting, still reading. Things have not been going all that great. Due to missing chemo for many months (first infection last fall then cardiac reaction to Xeloda in January) cancer in my abdominal area has progressed a bit. Currently my HIPEC surgeon says surgery is not a good choice. I'm in no shape for another HIPEC anyway. I've been having difficultly keeping weight on. I also get very winded easily, I think it's blood pressure drop on getting up or on exertion, so I've not been able to really work out. Lungs are ok. Also echo cardiogram was fine. I started up again with Irinotecan three weeks ago and it really sent me into the weeds. I was dehydrated, got IV fluids a few times. Also have developed a UTI and the first drug I was on (Bactrim) was not effective (based on culture/sensitivity). Now on Augmentin. Seems to be working much better. My wife and I are doing a walk for a local cancer support center Sunday morning April 6th, 5k. I will just take it slow.

Last PET scan in February showed something suspect in liver, no SUV, just something. Also have a few lung thingies that are between the top and bottom lobe of my left lung. No SUV and small so just something mentioned at tis point. At that time I was having some kidney issues due to urinary retention so no contrast was given so limited on the CT portion of the scan to see what's up. (Urinary retention has put me down the path of straight cathing several times a day to empty my bladder which is probably the cause of the UTI. Kidneys are better now).

After Irinotecan my options are diminished. I've had a good bit of damage from Oxaliplatin and don't want it, as well as not being able to do 5FU anymore so probably not an option anyway. Neither my oncologist nor I are happy with Stirvarga performance as well as the debilitating effects. So probably will be looking at clinical trials at some point.

At this point I have no symptoms from the cancer, it's all the other crap and treatments that are dragging me down.

[kiwiinoz]

Hi Ray

I've noticed you've been MIA and understood the reasons for not jumping in on the exercise threads. I am always sorry to hear about anyone's condition taking a turn for the worse but why are you not a good option for HIPEC? It seemed to help a lot in the past and is it just due to the lungs and liver issues?

I'm not the best at new drugs but Stivagra could be a possibility could it not? If not chemo what about RFA or SBRT on the liver / lungs? I must admit I don't know a lot about peritonal spread but if you can address the liver and lungs does it give you a shot at HIPEC again?

Best wishes and now that the kidneys have resolved have some nice wine to relax. The extra calories may help you keep the weight on.

Kiwi

[raym]

Hi Ray

I've noticed you've been MIA and understood the reasons for not jumping in on the exercise threads. I am always sorry to hear about anyone's condition taking a turn for the worse but why are you not a good option for HIPEC? It seemed to help a lot in the past and is it just due to the lungs and liver issues?

I'm not the best at new drugs but Stivagra could be a possibility could it not? If not chemo what about RFA or SBRT on the liver / lungs? I must admit I don't know a lot about peritonal spread but if you can address the liver and lungs does it give you a shot at HIPEC again?

Best wishes and now that the kidneys have resolved have some nice wine to relax. The extra calories may help you keep the weight on.

Kiwi

PET is showing some Pelvic activity and HIPEC doc feels that he would not be able to resolve all of the cancer and that it would just come back. Perhaps in the future my condition will chance to allow HIPEC. The liver and lungs have no definite mets, just suspicious things. As far as Stivarga. Both myself and my oncologist are not happy with the results combined with the debilitating effects. Perhaps that will change if things get more life threatening. But I have told my oncologist I don't want to be min bad shape for six months, just to survice for those 6 months.

I have been walking when I can. I am doing other things, playing in a band quite a bit so I try to save my energy for that and not expend it alot into exercise that will make me sore/tired.

[skypup]

Ray, what a tough go. If there is anything I know from having "known" you on here for a while, it's that you have always been really good at enjoying what life brings you even with the cancer. I imagine the constant "stuff" has perhaps really run you down. If cancer would just come and take us quickly, I think we could deal with it better. I sure understand your thoughts on Stivarga; I would be feeling the same. Glad you are able to play in your band! Will be looking forward to updates.

[Maia]

told my oncologist I don't want to be min bad shape for six months, just to survice for those 6 months.

Power to you, Ray. I'm so happy to hear you're playing in your band!! Hope all the crap/ side effects from the treatments resolve and you feel better... who knows, you may find other path where to keep walking, with good quality of life.
Take it slow, yes, at that walk for a local cancer support center this Sunday. So great you're going together with your wife. : )

[raym]

told my oncologist I don't want to be min bad shape for six months, just to survice for those 6 months.

Power to you, Ray. I'm so happy to hear you're playing in your band!! Hope all the crap/ side effects from the treatments resolve and you feel better... who knows, you may find other path where to keep walking, with good quality of life.
Take it slow, yes, at that walk for a local cancer support center this Sunday. So great you're going together with your wife. : )

We are participating on a team from our local YMCA where I attend a Livestrong spondered cancer program. Good friends there at the Y..and they party well when they come to see the band

[Maia]

Good friends there at the Y..and they party well when they come to see the band

I'm looking at your avatar and thinking '...and ray also knows how to party well!' Have a great, great time!!

[Rob in PA]

Jam on Ray, hope things ease up for you a bit. Maybe this warmer weather will help as well. I've always said the same thing to friends about the cancer vs treatment, in that I never really noticed the cancer presenting discomfort as much as the treatments! The blockage at my original diagnosis was the only "thing" that ever told my body i have cancer.

Get well friend,
Rob

[ams5796]

Ray,

I'm sorry to read this. You are such a positive person and seem to really enjoy your life. I wish you the best.


Ann

[BrownBagger]

Good to see you again, Ray. Hoping for the best for you.

[Nester]

Hi Raym,
We share the same path, and sincerely i wish we could help each other in this path but we can just walk it trough.
I wish you all the best and painless moments!

[mymom]

I am glad you updated us! Thinking of you and enjoy the walk!

[hart2hart]

Ray,

Pete and I will be thinking aboutcha on the 6th!

Please Keep fighting away, we need you here. We've learned so
much from you. Thank you Ray!



Julie H
Stamford, CT

[livingbyfaith]

I don't know where you are being treated however my cousin just changed doctors going to a cancer center and they operated when the old doctor wouldn't and found it was not cancer spreading but radiation scar tissue. They are trying him on a clinical trial. I would suggest another opinion. You are young, lots of fight in you.

[dianne052506]

If you think clinical trials are in your future, I strongly advise looking now, not weeks down the road. This is government paperwork, so you can imagine how slowly things can move.
I got almost 2 years without chemo from the Genentech PD-L1 trial I was on. Now, I think there are 4 companies with PD-1 or PD-L1 (see some of Maia's posts, she explains things very well, or the overall thread on clinical trials, for explanations I am not capable of). The side effects of the study drug were very minimal, although if you are already having kidney issues, I would not advise a trial with Avastin.
I'm by no means an expert on trials, but will happily answer any questions, if possible.
Best wishes,
Dianne