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Lulu update

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Well darn it......... the last CT scan has shown that the darn stupid beasts have progressed so I have a call into my gyn/onc about an appt to discuss another clinical trial or ???plan B. I had a feeling the scans weren't going to be positive news, especially when my CA 125 marker went up 15 points after dropping previously but dont worrry I am not giving up yet and will continue to fight!! Surpisingly all my bone lesions are dormant and not causing any problems. Its the lung lesions that are growng and a couple in my pelvis.  I feel pretty good other than some back pain which thankfully aleve takes care of. 

Have been on the clinical trial website and there is a one trial that my center is involved in that I might be eligible for so we will see what doc says. And yes I am in pretty good spirits, leaning on my faith and praying that something better is just around the corner for my cancer. 

Happy Monday everyone! xoxo

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

Darn it is right! Good to hear you are leaning on the strength of your faith.  I don't know what I would do without mine.

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

Dammit all, Lulu, that is NOT what we wanted for you !! BUT, at least the bone leisons aren't growing and your pain is manageable with OTC meds, that part is very positive. Has there been any discussion of targeted radiation for the lung? This seemed like a decent overview of some possibilities:

https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/patients/treatment/types-of-treatment/radiation-therapy.html

I'm so happy that your spirits remain high and commend you on that achievement; you're an inspiration to the rest of us. Please do keep us updated and know you're in my prayers. I, also, don't think you've reached the end of your options and will be curious to see where the next treatment takes you...hopefully straight to NED! Hugs!!

 

Donna Faye's picture
Donna Faye
Posts: 233
Joined: Jan 2017

Lulu, I formed a lunch group of 7, 6 ladies that were my Mustangs ( what I call my support team) and we had lunch yesterday. 6 of us are cancer victors and yesterday we were discussing how none of us were sure 3 years ago that we would have a tomorrow. As one said, " My immunotherapy is a magic bullet as I never believed I would be here today." So I am wishing you a magic bullet as well. The strides they have made in cancer treatment since my first bout 20 years ago is amazing. They may not have a cure for all, but these magic bullets are helping us stay around and in pretty good shape. Hugs and love to you as you gear up for battle. We are behind you.

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Yes that is what I am wishing for ....that magic bullet!!! Just got to find the right combination to stop the lung lesions and the pelvis lesions. Thankfully the bone lesions are stable and not causing problems. Having everything stable and not progressing would be wonderful!!! Thanks for your post....very encouraging!! xoxo

Armywife
Posts: 281
Joined: Feb 2018

We're here to cheer you on through the next steps!  Thank you for keeping us posted.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

Darn, Lulu, I am so sorry to hear this.  You have an incredible spirit and that is so wonderful for all of us to see.  Please let us know your next step.  Hugs dear one.

Fridays Child
Posts: 43
Joined: Jul 2019

Darn it, Lulu, I hate to hear that.  Extra prayers that they'll find something soon to help.  Glad to hear you're feeling well and hope the lung mets will give up soon!

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

I hope you can get started with a new treatment plan soon to get rid of those persistent lesions. But I'm glad to hear the pain is still manageable. Facing something new is always more palatable when you're feeling generally okay. Positive vibes being sent your way…

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

I hope the trial comes through! 

barnyardgal
Posts: 208
Joined: Oct 2017

Drag. I'm sorry. Glad to hear you have such a good attitude and hope that clinical trial comes thru quickly.

MAbound
Posts: 854
Joined: Jun 2016

Wow! Here you are giving us news we really don't want to hear and yet you are not bringing us down because you can still be positve about it all. You are amazing and it's such a gift that you stay here for everyone else. Thanks for not giving up. It means a lot to any facing something they don't want to do to see others keep at it. You pull us all along with you and your strong example helps many!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1523
Joined: Jun 2015

Sorry to hear this Lulu. I hate this crappy cancer! I hope and pray the clinical trial will be a great fit for you and perhaps can get you to a point of NED. Glad to see your spirits are up and you are still ready to fight. Please keep us updated as you move through this phase. We are all here for you.

Love and Hugs,

Cindi

Feelingalone74
Posts: 187
Joined: Jun 2019

Sorry to hear this Lulu. I admire your positive attitude and strength!

Sending u prayers and positive health vibes. 

Wishing u well!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Yep waiting to talk to doc looks like Friday....she just got back from vacation today so told her RN to give her a few days to figure out my next steps rather than bring me in today and 'Surprise!!' LuLu has progressed and wants plan B!!!!! Will call the trial RN today and tell her to cancel my Taxol appt on Friday.....useless to be doing Taxol if its not working. Also stopped the study drug yesterday so we can get that stuff out of my system before I start something else. Usually a clinical trial wants the 'wash out' period to be 4 weeks so I am just getting the show on the road a wee but quicker... being an advocate for myself!!! lol xoxoxo

Northwoodsgirl
Posts: 519
Joined: Oct 2009

Hi Lulu, I too am sorry to hear that the treatments aren’t controlling your cancer as hoped for.  You are very smart to proactively direct and take some control over getting a new protocol in place. No one has more of a sense of urgency than the person who has the cancer. I admire your positivity too! Good luck when you see your doctor. I will be keeping you in my prayers too!!

((Hug))

Lori

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

So sorry to hear about the news but I am so impressed with your spirit and ability to move past this news and on to the next treatment. We are here for you.

Denise 

jan9wils's picture
jan9wils
Posts: 56
Joined: Mar 2017

Well it stinks that it didn't work but good that there's another trial that might be a good match. I've got my fingers crossed that you can start soon and that it doesn't have a bunch of side-effects. 

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

I hope the clinical trials will help you. I was two during 2018 and they did help keep my tumors at bay. I've tried several things since then and they all help somewhat until the next big thing comes along. And yes, you're your own best advocate. Good luck to you!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Yes I too would be interested to know which trials (drugs) you tried. I am hoping to stay close to home with the next trial.... the only other option is more chemo (Doxil) ugh!! Anyway really interested in what Kat tried. xo

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

Kat, I hope you see this question, I'm sorry if told us this somewhere I just don't recall.  Do you know and can you share what drugs you were taking during your clinical trial?  I realize they don't always tell you.

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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
Posts: 43
Joined: Jul 2019

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's picture
derMaus
Posts: 558
Joined: Nov 2016

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's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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

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