~Rich66~Update on Mom If You have A Moment - Page 2

Rich66 · 09-24-2008, 12:36 PM

Thought plan was Taxol, carbo, hercep. IHC came back negative and the local doc felt the prudent thing was to just use Taxol, meet with Cobleigh tomorrow and add extra ingredients upon further discussion. I don't know about this but stepping into this slowly seemed to have some psych benefit to mom since she is unfamiliar with chemo. Seemed to think Carbo was not worth doing if her2 was negative. Mentioned gemcitazine or something as possible combo. Sure wish this her2 test would be resolved soon. Supposed to go to Mayo next for further FISH test. Strange. They gave me mom lorazepam for nausea and it made her speak gibberish. Gave her benadryl and it made her legs restless. Loopy and restless. Hard to see her this way. It's 2:30pm and we're supposed to drive 2.5 hrs to Chicago by tonight.As always..thoughts?

chrisy · 09-24-2008, 01:25 PM

It is, of course, different for everyone. Your mom should be getting premeds including anti-nausea meds, a steroid, and benadryl.

When I had that same chemo combo, I had no nausea at all, ever. The first time infusion I got a fever that night (a few hours after the infusion). Her doctor will probably instruct her to call if she develops a fever over 100.7 or any other severe symptoms. When I called, they told me to take an ibuprofen (which worked).

For me, the steroid makes you wired (like, up cleaning the house all night), the benadryl makes you very very drowsy. In the end, the steroid will win and you won't be able to get to sleep without a sleep aid of some sort.

I dealt with this, and the potential for nausea, by taking an Ativan in the evening of my infusion whether I thought I needed it or not.

The steroid also made my face flushed the next day - didn't hurt but it freaked me out!

As I said, everyone is different so you won't know till you know. But I had no debilitating side effects at any time. I was a bit more spacey than usual (that was a joke) after my treatment, but that was a good excuse to not have to cook. I was able to eat normally tho.

The first cycle is pretty scary, for lots of reasons not least of which is just NOT KNOWING how you will be affected. But with that chemo, it is very reasonable to expect to NOT have nausea - but be armed with meds and take them at the first sign of problems if you need to.

Sheila · 09-24-2008, 05:31 PM

Rich
I am anxious to see what Dr Cobleigh recommends...I am on Taxol every other week, and like Chrisy said, I get steroids, benedryl, & pepcid as premeds...the steroids wire me, as Chrisy said, so I am usually up all night...I was given Compazine the first treatment (when I also got Avastin), never had any nausea and never took it again...did they get the ER and PR results from your Moms tumor? Let us know how she makes out in Chicago.

BonnieR · 09-24-2008, 11:12 PM

Just came across your post. Too late to offer the support you needed this morning. How did it go? It was my experience that the first day was more about anticipation. I was mostly just really tired when it was over. But I recall it was not until a day or two later that I began to have some bone pain.

Rich66 · 09-25-2008, 11:28 AM

Strange. Last minute negative IHC retest made local onc want to skip herceptin, and therefore skip carbo. The agreed 1st step was to do Taxol solely first round, meet with Dr. Cobleigh in Chicago after and go from there with any combinations. Still going to get 2nd FISH read somewhere. I wish I knew what lab Slamon relied upon. Anyone got 2nd opinion on equivocal her2 path?
Mom was up all the night before and the though of chemo made her a bit queasy. Doc said she'd give her an anti nausea pill. Turned out it was 1 miligram lorazepam. That made her absolutely loopy all day and part into the night. Benadryl made her legs extremele restless. I had to walk backwards in front of her to keep her from falling. Ended up canceling trip to Chicago based on Dr. Cobleigh's recommendation, trying to reschedule. Mom is fine today..maybe it would have been ok to go to Chicago.
That said, the Taxol part hasn't seemed to phase here too much. is harder to control bowel movements a potential SE? Overall she seems more comfortable with the idea of chemo. I just hope we can keep things moving and have aggressive enough treatment to get things more controlled. A couple interventional radiologists have expressed interest in her case after seeing scans. One told me they sometimes do IR (spheres etc) simultaneously with chemo when situation is dire.

Rich66 · 09-27-2008, 08:26 PM

Update: Having equivocal pathology sent to Dr. Press at UCLA (Slamon's recommended pathologist). Figure thee guy who invented the assay should be qualified to interpret it..
Mom is really feeling the Taxol now. Aches, pains, difficulty sleeping. Learning the implications of systemic, untargeted therapy. Man..I can pull up a long list of promising treatments..but have to watch her deal with what's available now. Rescheduled Chicago visit with Dr. Cobleigh for Tuesday. Hoping to vist IR Dr.(spheres) at U of I if it can be fit in. I hope mom is well enough to travel tomorrow night. I've been coming across some info talking about combining Taxol with Xeloda. Anyone had this combo?

Rich66 · 09-28-2008, 05:26 PM

In an ER now (Sunday 7:30pm). Mom hasn't slept for 2 nights due to pain in legs, abdomen, ribs back.

StephN · 09-28-2008, 09:13 PM

Sorry to hear about the ER!
But the hard chemos can do that to a person. Make you feel like you have been hit all over with a bat.

I was given Neurontin and took a mild pain killer at times. so I hope that is what will happen with your Mom.

The worry factor may interfere with sleep as well, and a heating pad also helped me.

Rich66 · 09-28-2008, 09:23 PM

Morphine is helping. They will be admitting her and running abdomen and chest CT tonight. Did any of you have pain that seemed to move around?

carstell · 09-29-2008, 07:07 AM

Hey Rich, I shot you off an email from my home address too. I had pretty bad bone pain with the Taxol. It was mainly in my hips and thigh bones, but I also felt it in my upper arms and ribs too. I was taking Vicoden pretty much through the treatments! Good luck with the other tests. Hope your mom can find some comfort!

Cheryl

Rich66 · 09-29-2008, 09:05 AM

Pain is being attributed to the Taxol. Abdominal scan seems to suggest progression in the liver, blood bilrubin at 5 from earlier 1.8. They can't stent the liver. Talking about release later today with oxycodone for pain. Talk of changing chemo regimen.

StephN · 09-29-2008, 11:00 AM

At least there is a plan for Mom.

One other thing that can contribute mightily to pain is if she is getting the white blood count booster called Neupogen or Neulasta. This is often given with Taxol. Back and hips were the most painful for me.

Maybe they will look at Navelbine??

chrisy · 09-29-2008, 01:59 PM

Hi Rich
Sorry, I haven't been paying attention. Sorry your mom is having such a rough go. Sending prayers and my best wishes for you both. Sorry, don't have any input on pain meds.

Rich66 · 09-29-2008, 02:53 PM

Chemo has been cancelled for Wed. Consult on Thursday. I'm scared the doc here is wanting to stop treatment. I don't know. Just getting such reserved comments from the docs subbing for her while admitted. Mom is doiong pretty well since switched to oral oxycodone. Still planning release in a couple hours. I'm really having trouble with all this.

Esther · 09-29-2008, 03:09 PM

rich, did they tell you why they can't stent the liver? It's not really that big a procedure, they put you under anesthesia, and insert the stent in the liver through a tube in her throat.

Is she too physically frail at this point? If there's an actual blockage that they can see on the CT scan, I really can't think of a reason they would not do the stent placement.

Sheila · 09-29-2008, 03:59 PM

Rich
So sorry to read about your Mom...I have never had problems like that with Taxol...especially the first one. What did the CT's show....is the pain possibly from progression in the liver and not the Taxol? Where is her consult appt at, in Wisconsin? Until they get definitive answers, it is probably best to have a plan and not make her sicker with more chemo. Have they mentioned any other chemos? Is she still getting a 2nd opinion in Chicago?
You will both be in my prayers.

Rich66 · 09-29-2008, 04:51 PM

Said they didn't think stent was possible based on some undetailed factors in the liver. Trying to figure out if mom..or I..are in ok enough shape to go to Chicago tomorrow for 2nd opinion. She's at UW-Madison now, follow up consult Thursday. She is currrently standing, combing hair in mirror getting ready to go. She's 71 and does come across frail these days, especially after the chemo. But much more herself iwth pain under control.
Thank you all for your thoughts.

BonnieR · 09-30-2008, 07:49 AM

Rich, I just wanted to acknowledge your statement "I'm really having trouble with all this." It must be so difficult to be thrown into a situation with so much turmoil and indecision. You are really stepping up to the plate and doing everything you can. This is a good time to try practicing "one day at a time." Just do what is in front of you. Prepare a list of questions and concerns for the docs and come up with a game plan . You may feel more control when that is accomplished. Please keep us posted and keep the faith.

juanita · 09-30-2008, 04:56 PM

rich- it's so nice to see you taking so much responsibilty for your mom. we're here for you! hugs and prayers, juanita

Rich66 · 09-30-2008, 11:03 PM

2nd opinion plan is continuing the painful Taxol with gemcitibane...n hope of "Quality Time"
oh..thi shas boosted mom immeasurably.
I'm sick of it. No onc would recommend chemo for adjuvant. Onc we settled with wound up being old school "no scan until symptoms" and left to pursue a new station in life while my mom quietly went stage 4 with no replacement onc. Oh..I should have been on top of this situation, right? All while tracking my Dad's forays into hospitals whilst in a nursing home? Now they say one shot at a guesswork of chemo for mom and probably nothing after if that fails. Sorry folks..don't give a shit if people feel I'm negative. This IS negative. Typing this from the business center of an expensive hotel overlooking the best and the brightest...but apparently not bright enough.
Gotta go wake mom up for her oxycodone.
Yes, I'm whacked.