It's the Big R now for me - UPDATE

[pollo65]

Gwen, you are one of my inpsirational folks here on the forum. May the big R work and may you have very few side effects---as has been said so many times before FIGHT ON OH MIGHTY QUEEN!
pollo 65

[Guinevere]

You guys have me so pumped up now that I think I'm ready to tackle the Stivarga! They should be calling today to let me know when it will be delivered.

Thanks so much guys! I don't know how I'd walk this journey without everyone here!

God bless ~
Guinevere
(Mighty Queen fighting the Beast with one hand and a piece of pie in the other )

[concernedrelative]

FWIW: My wife has completed her 1st cycle and had to stop 3 days early. Having a terrible time specifically with hand/foot syndrome (more on the feet). Throbbing pain through the bottoms of her feet. She's been dose reduced 25%, not sure if Doc will roll the dice and reduce her another 25%. Other than that, her symptoms have been manageable. I am guessing this will be the deciding factor whether she stops the drug i.e. before the next scan date.

Best, Concerned Relative

[Guinevere]

Concernedrelative,
Thanks for letting me know your wife's experience. That's one of things I'm most concerned about. I've had problems with hand/foot with the Erbitux and my feet aren't completely healed yet. They're in better shape than they were but they're by no means completely healed.

I will get the drugs tomorrow and start on Thursday. My DIL is in a production of Godspell which starts on Friday and we're planning to go on Saturday. Hopefully, the side effects won't be kicking in by then. That's what I'm hoping. I've always wanted to see the play and anytime she sings, I don't want to miss it. Voice of an angel!

Feet kept me awake last night. If it starts up again, I'm taking the Lyrica and pain meds. I'm tired and tired of being tired.

God bless ~
Guinevere

[trapbear]

HI Guinevere,
I don't post often but my husband will probably be strarting regorafinib soon too. He has mets in lung and liver and folfiri and avastin is not working as well anymore. Luckily the mets are very slow growing. I hope you tolerate the drug well. One of our oncologists at UCSF recommends starting all her patients at half dose, then slowly increasing if tolerated. Hope all goes well and I look forward to reading how you are doing. You will be in my thoughts.
Bill

[Guinevere]

I just got the drugs. Something about them being here, makes it more real. I don't know why I'm so nervous! I've been on Folfox, Avastin, Irinotecan and Erbitux and wasn't particularly nervous about starting any of them Maybe I should have been concerning the Oxaliplatin but ignorance is bliss, I guess.

I asked the onc if I should keep a log since I'm the first patient she's had to be on it. She said, if I wanted to, that would be fine. I think I will because I think it will make it easier to pinpoint when problems started and what helped and didn't help.

Bill, I'm going to start at full dose and then reduce if and when needed. It's funny how good oncs can have opposite views on how to proceed with things, isn't it?

So...here we go! Tomorrow morning, cherry yogurt and 4 Stivarga pills in addition to my others meds for breakfast.

Thanks for all the support ~
Guinevere

[Bev G]

Thinking of and praying for you this morning, Gwen. I know you're anxious, I would be too. Remember all the real love and virtual hugs you have surrounding you today. Godspell is so wonderful, I hope you will be feeling very well and will be up for enjoying it. Hang in there, Very Mighty Queen!

Love you!

Bev

[Icesk8tr]

Dear Gwen, Mighty Queen,
I am praying for you and will swing chickens for your success with the Big "R". I hope there will be no side effects, or only very tolerable ones. I'm sending good thoughts and healing vibes your way. Your are not only a warrior queen, but a very kind, thoughtful and all around wonderful person. We are all pulling for you. We love you. Feel well.

Hugs,
Christine

[Guinevere]

Thanks guys! Took the first dose this morning and no immediate reaction so I'm cheered by that. I didn't sleep well last night. I guess I was anxious and I know I shouldn't be but there ya go.

God bless ~
Guinevere
(Mighty Queen fighting the Beast!)

[justin case]

Hi Guinevere,
I was just checking up on my Texas queen, and was wondering how things are going for you. You're in my thoughts, obviously
Warm regards,
Michael

[Guinevere]

My bp as skyrocketed to 160/110! So, I'm adding another Vasotec to the mix and, so far, it's slowly coming down which is the way I want it to work. My skin is thinning like you wouldn't believe! Mouth sores are such a constant that I forget to mention them and my fatigue to my onc. One good note - on Tuesday, I had lost 4½ pounds since the 30th. Something needed to happen in that area. I was beginning to be concerned about my heart with all the weight that was packing on. Bone pains have been pretty excruciating but the Stivarga nurse wasn't surprised and agreed with the onc that I need to start with Ibuprofen and then graduate to Tramadol and then to Dilaudid. If my stomach holds out, I'm using this method because the pain pills and muscle relaxers have relaxed my guts too much and I was close to a blockage. DO NOT WANT THAT ALL! Other that all that, I'm doing alright. Thanks, Texas transplant, for checking on me. I really appreciate it. I had lost this thread and just now thought to do a search for it. Darn chemo brain!

Take care and God bless ~
Guinevere

[justin case]

My bp as skyrocketed to 160/110! So, I'm adding another Vasotec to the mix and, so far, it's slowly coming down which is the way I want it to work. My skin is thinning like you wouldn't believe! Mouth sores are such a constant that I forget to mention them and my fatigue to my onc. One good note - on Tuesday, I had lost 4½ pounds since the 30th. Something needed to happen in that area. I was beginning to be concerned about my heart with all the weight that was packing on. Bone pains have been pretty excruciating but the Stivarga nurse wasn't surprised and agreed with the onc that I need to start with Ibuprofen and then graduate to Tramadol and then to Dilaudid. If my stomach holds out, I'm using this method because the pain pills and muscle relaxers have relaxed my guts too much and I was close to a blockage. DO NOT WANT THAT ALL! Other that all that, I'm doing alright. Thanks, Texas transplant, for checking on me. I really appreciate it. I had lost this thread and just now thought to do a search for it. Darn chemo brain!

Take care and God bless ~
Guinevere

Hell, some people don't even consider Houston part of Texas, but I sure do have a lot of Texas surrounding me. Being born in Chicago, and raised in Kansas City, and now living in Houston for some 38 years, I have learned the big city ways. As I don't know what Tramadol is, I'd go straight for the Dilaudid. There is a bit of old hippie in me too You take care precious one, and don't let that crap ruin your QOL.
Warm regards,
Michael

[Bev G]

My bp as skyrocketed to 160/110! So, I'm adding another Vasotec to the mix and, so far, it's slowly coming down which is the way I want it to work. My skin is thinning like you wouldn't believe! Mouth sores are such a constant that I forget to mention them and my fatigue to my onc. One good note - on Tuesday, I had lost 4½ pounds since the 30th. Something needed to happen in that area. I was beginning to be concerned about my heart with all the weight that was packing on. Bone pains have been pretty excruciating but the Stivarga nurse wasn't surprised and agreed with the onc that I need to start with Ibuprofen and then graduate to Tramadol and then to Dilaudid. If my stomach holds out, I'm using this method because the pain pills and muscle relaxers have relaxed my guts too much and I was close to a blockage. DO NOT WANT THAT ALL! Other that all that, I'm doing alright. Thanks, Texas transplant, for checking on me. I really appreciate it. I had lost this thread and just now thought to do a search for it. Darn chemo brain!

Take care and God bless ~
Guinevere

Hell, some people don't even consider Houston part of Texas, but I sure do have a lot of Texas surrounding me. Being born in Chicago, and raised in Kansas City, and now living in Houston for some 38 years, I have learned the big city ways. As I don't know what Tramadol is, I'd go straight for the Dilaudid. There is a bit of old hippie in me too You take care precious one, and don't let that crap ruin your QOL.
Warm regards,
Michael

LIKE [X]

[concernedrelative]

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.

[Guinevere]

My bp as skyrocketed to 160/110! So, I'm adding another Vasotec to the mix and, so far, it's slowly coming down which is the way I want it to work. My skin is thinning like you wouldn't believe! Mouth sores are such a constant that I forget to mention them and my fatigue to my onc. One good note - on Tuesday, I had lost 4½ pounds since the 30th. Something needed to happen in that area. I was beginning to be concerned about my heart with all the weight that was packing on. Bone pains have been pretty excruciating but the Stivarga nurse wasn't surprised and agreed with the onc that I need to start with Ibuprofen and then graduate to Tramadol and then to Dilaudid. If my stomach holds out, I'm using this method because the pain pills and muscle relaxers have relaxed my guts too much and I was close to a blockage. DO NOT WANT THAT ALL! Other that all that, I'm doing alright. Thanks, Texas transplant, for checking on me. I really appreciate it. I had lost this thread and just now thought to do a search for it. Darn chemo brain!

Take care and God bless ~
Guinevere

Hell, some people don't even consider Houston part of Texas, but I sure do have a lot of Texas surrounding me. Being born in Chicago, and raised in Kansas City, and now living in Houston for some 38 years, I have learned the big city ways. As I don't know what Tramadol is, I'd go straight for the Dilaudid. There is a bit of old hippie in me too You take care precious one, and don't let that crap ruin your QOL.
Warm regards,
Michael

Believe me, Michael, I fight the temptation to go straight to the Dilaudid (the old hippie in me coming through as well). I think Tramadol is a mid-level pain killer. It does the job sometimes but can wire me up terribly if I don't go ahead and take a nap when I start feeling sleepy. Being wired and having extreme fatigue isn't very conducive to much.
My husband was born and raised in southern Illinois. He's been a transplant for almost 50 years so I call him a naturalized Texan. It seems you qualify for that designation as well with 38 years of Texas weather and Houston weather to boot! Gawd, I hate the weather there. It's like you can spoon the air and put it in a jar! I was raised in Palestine so it wasn't much better there as far as the humidity goes.
Yeah, my QOL is uppermost for my and my onc. I'm very blessed to have her!

God bless ~
Gwen