It's the Big R now for me - UPDATE

[justin case]

If you look at it from my point of view, I would rather spoon the air, than shovel the snow, especially when your car is buried under a snowplows splendid work I can always look on the bright side and waller (wallow for those of you that can't speak proper Redneck) in the fact I live in Katy, TX,( yea like that's a hell of a long way from Houston) Since now I know your an old hippie too, ya know just keep on truckin, and keep us informed!
Warm regards,
Michael

[Guinevere]

If you look at it from my point of view, I would rather spoon the air, than shovel the snow, especially when your car is buried under a snowplows splendid work I can always look on the bright side and waller (wallow for those of you that can't speak proper Redneck) in the fact I live in Katy, TX,( yea like that's a hell of a long way from Houston) Since now I know your an old hippie too, ya know just keep on truckin, and keep us informed!
Warm regards,
Michael

So true about keeping on trucking, Michael. You're right as well about being able to spoon the air being better than shoveling the snow!!
I'll be glad about when Thursday rolls around! That starts the week when I'm off chemo! Prayerfully, the bone pain will subside during that week. Adding the second daily Vasotec seems to be doing what I'd hoped it would do. My BP Is slowly coming down. Got a sudden sick headache this evening. It's been years since I had one and, quite frankly, I didn't miss them! The Tramadol I took for the bone pain helped some.
Hope your Sunday is a blessed day ~
G

[concernedrelative]

Headed to Onc PA, hand/foot syndrome and neuropathy have gotten to be too bad even on gabapentin pills/cream and urea cream. Guessing wife will need to stop R a week early. Had to sleep with Oxycontin and percoset last night. Sigh, going to be a long two weeks till scans. Hopefully she'll feel much better for her b-day next weekend.

[Guinevere]

I'm hoping, concernedrelative, that the onc PA is able to help her find some measure of relief. Who knew feet could hurt so badly?? AND, look totally normal?? Crazy!

I haven't been on much because sitting is a problem at the moment. Not for the usual reason, my Barbie Butt hurting, but my hip joints don't like the sitting position very much right now. Weird, huh??!

God bless ~
Gwen

[Kathryn in MN]

Wife in to 2nd week of second round. The coughing has gone away and she's passing periodic BMs normally as well as thru the daily ostomy use. She feels good all things considered with the only significant limited factor being severe foot neuropathy. She's trying urea cream, gabapentin pills (4th day) and just started gabapentin cream yesterday. I am doubtful the gabapentin is doing its job fully and she's started to have some angry outbursts (3 in the last 48 hours) which are just not like her at all even with all she's been thru. We're going to give this drug till Sunday and then request a switch. Got her a nice massage 1st thing this morning but looks like farmers' market visit afterwards is out of the question. On a more positive note, she wants to jump on my motorcycle as a passenger for the 1st time ever. So we're still pushing boundaries in this house! Since I am a new rider as of last year, I got most of our riding gear barely use or new but at a discount on ebay. Her helmet is much fancier than mine with a audacious graphic of a heart with a sword thru it and the saying "Little Miss Dangerous". If you knew what a reserved, polite, refined lady my wife is, you would get the joke of her alter ego tough gal riding persona.

Having met her, I did have to giggle a little about her helmet. I'm glad she is still up for new things and getting out there actively living! Is there a possibility of taking a little break and then going back on a reduced dose? It seems no one can tolerate the full dose. With both Zaltrap and Stivarga - both drugs approved just a year ago - there is a common theme - the dosage they start us all on is too much for just about everyone. I can only tolerate 50% dose of Zaltrap...

[concernedrelative]

Onc (thru unscheduled PA visit) decided to stop her one week early. My guess is her feet have become what is called a grade 3/4 event. This a.m. wife said feet feel 50% better and that is w/o pain meds. Clinicians think most of the pain coming from hand/foot syndrome and not neuropathy. Only solution to the former is stop drug, pain meds and keep using a lot of creams.

Not sure what will happen although Onc also provided some very preliminary info on a phase I trial starting at UMN (I'll provide links in the near future after I've done cursory search). I just don't think she's ready for that as she hoped to get a bit more from the big R, then try zaltrap then investigate the anti-PDL1 compounds. Reading between the lines, Onc is ready to make a switch esp. with CEA in the 70s a few weeks ago but we'll wait for scans. Sigh...

Best to all, Concerned Relative

[smokeyjoe]

The only ongoing issue I have is the bloodpressure, but I got on top of it when I started the pills again, and am now finding I need less blood pressure pills to keep things in the normal range. Last month it took a lot of dr.'s appts. etc. keeping an eye on it .... the week off regorafinib my blood pressure dropped right back to normal. I think getting on top of it before it got out of control high has helped (who really knows) am finding doctors have no real clue how this drug works. When I went to onc. appt. she said her other patients were not tolerating the drug. I'm of course concerned that with no side effects if it's working on the cancer cells!!!

[concernedrelative]

Wife's CEA came back at 64 (monday) or roughly down 10%. Still too high and more than likely side effects will cause her to stop the big R. After seeing harsh damage to feet tough to consider a dose reduction will be what is required but we'll let Onc make that call. We'll seen next Friday after scans. Looks like the theory of a lot of inflammation was most likely wrong. On the positive side, for the moment, CEA is not exploding higher.

Healthy weekend all, Concerned Relative

[rosa01]

Gwen

Just wanted to say to keep fighting this c thing? Grandchildren are great and can make this fight worth every minute. Love hearing from you always look foreword to your post.

Bill had three small cancer lesion that they believe merge to make one. So surgery will be done in October. That battle continues.

Sheila

God Bless and keep you.

[Guinevere]

Gwen

Just wanted to say to keep fighting this c thing? Grandchildren are great and can make this fight worth every minute. Love hearing from you always look foreword to your post.

Bill had three small cancer lesion that they believe merge to make one. So surgery will be done in October. That battle continues.

Sheila

God Bless and keep you.

Thank you, Sheila. I so appreciate the encouragement! I was telling Hubs the other day that I'd like to get through one more round at full dosage and, if things aren't improving as far as side effects go, I will gladly do it. Here's my reasoning… if I give that stupid new tumor a big punch at the beginning, there might be a better chance of getting some shrinkage or stability. I don't say this lightly. I've started having sick headaches which might be connected to the rise in my BP or it might not even though sick headaches aren't a listed side effect. In addition to that, I'm dealing with very sore feet & hands, bone pain that can be excruciating, mouth sores or severe mucositis, joint pain and fatigue. Other than that, I'm doing great!

As sore as my hands & feet are, I only have one skin break and I'm so glad about that. Between the mucositis & loss of appetite, I'm losing weight, thank God! In the almost two years I was on infused chemo, I gained about 50 pounds which isn't good for my heart. I think I can safely lose 20 - 25 pounds without it being a problem but I'll check with my onc on Thursday to make sure my thinking is right on that matter.
I'm hoping we all here on the CC have a fun Labor Day weekend. I don't know how much fun I'll have but I'm gonna try!
God bless ~
Guinevere

[justin case]

Dearest princess of the round throne, please remember it's not everyone who can go to Paris at whim. I hope your weekend is all it can be!!
Warm regards,
Michael

[Guinevere]

Dearest princess of the round throne, please remember it's not everyone who can go to Paris at whim. I hope your weekend is all it can be!!
Warm regards,
Michael

This is true, Sir Michael. However, I have some very loyal minions and I leave the Parisian travel details to them.

This list 4th without bone pain and my BP was 136/86. Woohoo! My feet are still sore as are my hands but all the cracks have healed up. Mouth sores are still a problem but I did learn yesterday that I can eat crunchy peanut butter and plum jam without it hurting me. Fatigue and middle back pain when I'm up and about for more than 15 minutes or so are still an ongoing problems. Frankly, the back aches have been a problem for several months now and there's no indication on my scans why this would be unless it has something to do with the degenerative disc disease which is what we're thinking it is. Other than finding a happy medium with what's left of my bowels, that's the update today.

I start back on chemo on Thursday which is also my onc day.

God bless ~
Guinevere

[Guinevere]

Evidently, I'm looking better than ever because everyone at the cancer center told me so! Seriously, the biggest problem today is fatigue (what's new??!). Before we reduce the Stivarga, we're going to try to tweak my blood pressure and heart meds to see if we can get things to behave that way and keep on blasting the tumors with poison. My blood work was good too except my glucose was 136 and I'm not happy about that. It wasn't a fasting blood sugar but it still shouldn't be that high. Oh yeah... they like to have never got my blood to draw today. What's up with that?? Maybe I need to hydrate better.
God bless ~
Guinevere

[horizon]

Just wanted to wish you the best in your fight. I love your attitude towards this.

[Guinevere]

Thank you, horizon!