Lulu update

Lulu7582

Saw doc on Friday

Ok so talked to doc and we are looking into all options right now....clinical trials far and near plus maybe going back to the tried and true chemo....different than the taxol / carbo combination. So have appt August 12 to discuss the options. Due to the clinical trial wash out period of 4 weeks we have to sit tight until that time is up before I can start another. Anyway I am hopeful and looking forward to the next treatment plan. Just being off all the treatment drugs I can tell the old beasts are having a field day!!!! The pain has ramped up but thankfully doc is getting me some extended release MS which I hope will get the pain back in control. Haven't had any luck with the OC drugs trying to get the pain manageable.... good old aleve isn't working as well as it did previously. But I manage just waiting for the insurance to give the PA!!!! Otherwise I carry on and live each day. Went to a Broadway show yesterday with my hubby. It was fabulous to be out and about and to forget about those little beasts! Had a great seat and enjoyed the show. Tried to have a wine spritzer but I am just off all wine unfortunately. I used to love my glass of chardonnay or pinot grigio.....oh well xo

Fridays Child

Lulu7582 said:

Saw doc on Friday

Ok so talked to doc and we are looking into all options right now....clinical trials far and near plus maybe going back to the tried and true chemo....different than the taxol / carbo combination. So have appt August 12 to discuss the options. Due to the clinical trial wash out period of 4 weeks we have to sit tight until that time is up before I can start another. Anyway I am hopeful and looking forward to the next treatment plan. Just being off all the treatment drugs I can tell the old beasts are having a field day!!!! The pain has ramped up but thankfully doc is getting me some extended release MS which I hope will get the pain back in control. Haven't had any luck with the OC drugs trying to get the pain manageable.... good old aleve isn't working as well as it did previously. But I manage just waiting for the insurance to give the PA!!!! Otherwise I carry on and live each day. Went to a Broadway show yesterday with my hubby. It was fabulous to be out and about and to forget about those little beasts! Had a great seat and enjoyed the show. Tried to have a wine spritzer but I am just off all wine unfortunately. I used to love my glass of chardonnay or pinot grigio.....oh well xo

Best of luck!

Lulu, continuing to pray for you and hoping the next one will be your magic bullet!  Love seeing your happy picture and reading your upbeat perspective.  Hope the pain meds will give you some relief soon.

derMaus

Fentanyl Patches

Hi Lulu,

At some point you may want to discuss Fentanyl patches with your doctor. I've been using them since April; without them my quality of life would be horrible. They are not for the 'opioid naive', i.e. people who haven't already recently used opioids, so you may not be there yet. However, it's good to keep them in the back of your mind as you navigate your next course of treatment. The peel-off patches last 72 hours and come in strengths of 25, 50, 75 and 100 mg. You start them gradually, usually at 25 or 50, and move them up or down as needed. I started wtih 25 in April and was up to 125 a few weeks ago before dropping down to 100 when the pain started letting up. As the treatment works (hopefully) and the pain diminishes, you dial them back down and ultimately discontinue them.  I had a similar round last year and had no trouble with stopping their use when no longer needed. Certainly they're something to be very careful of, but they also left me more clear-headed than the oral Dilauded and morphine I'd been taking. Only side effect was constipation, and that's handled through daily use of Senekot. Best wishes and thanks for keeping us posted. 

Lulu7582

Thanks Bobbi

Yes doc talked about the patches but as you said we aren't there yet so she wants to try extended release MS and see how that goes. Norco helps the pain but knocks me out so she is starting with lowest dose of the MS. Will let you know how it goes. xo