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My new plan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi ladies.

Well I gave alternative treatment a great shot and was very compliant with that for nearly 2 months. But...

Today I got results of blood work and scan and learned that cancer is progressing in lymph system from clavicle down. My CA125 jumped another 70 points (about 50% in 5 wks) so all the dieting did not stop Chester from marching on!!

The plan: start Abraxene chemo as soon as possible. They are working on getting insurance coverage.

I learned a couple new things. That UPSC cells have a protective "armor" that makes it particularly treatment resistant. And I am "Sparc (sp?) positive" which is a good thing since I have a better chance of treatment working than if Sparc neg.

So that's the latest. I'm officially off the diet that didn't kill Chester. I think we all can just give this fight the best we can give it and then God calls the rest of the shots. I really need to turn this over to God.

May we all receive whatever we need to carry on and do what we need to do. Hugs to all,

Mary Ann

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

Mary Ann, I am at a loss for words. I have so been hoping your news would be better. Cry tonight then start fighting again tomorrow. You are a wonderful person and your posts have helped me so much. I don't know what I would have done without you and the others on this site.

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

You have worked so hard to keep Chester at bay. I am sorry all you work did not help. The abraxene is new to me. Is it IV? How often will you get it?

The info on sparc positive or negative is also new to me. I'll have to look that up. Did that information come from your tissue assay?

As always you remain in my prayers. Continue the fight. You have been giving it your best. Hope you enjoy some of the food you have been missing.p In peace and caring.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Aww..I as well was praying for some good news! Darn that Chester, guess now one must get out the heavy artillery and fight like a warrior.

We're all here for you and I'll keep thinking positives. Prayer does seem to help, if nothing else, calm us to realize we truly don't have the control, only our higher power. Pray to keep strong and endure the journey.

Tonite sounds like steak and lobster with a nice Margarita...think?

Hugs,
Jan

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

Fight with what you can to get healthy and control Chester again from marching forward any further. I looked up SPARC and found this. SPARC (Secreted Protein And Rich in Cysteine). Increased SPARC expression in tumors resulted in improved response to albumin-bound paclitaxel (nab-paclitaxel, nab-pac) due to SPARC-albumin binding. Whatever that all means but I take it to be that the tumor cells will respond to chemo that has albumin binding. At least during your diet you body got healthier to fight the good fight. Will keep you in my prayers. trish

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

The Abraxene is a form of taxol that acts on proteinbound particles. My assay recommended this chemo. If I was SPARC negative, I doubt that Abraxene would have been recommended.

This will be infused every 3 weeks and then after 3 rounds I will get a PET scan. The insurance has to be approved - there is some question whether medicare will cover. Hopefully my supplement will. That darn insurance thing.

Thanks everyone for support and encouragement. I will be sporting my shiny head again soon. I will enjoy not having to pick chin hairs for awhile - yeah. LOL.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I'm so sorry the news wasn't good, but I know you will win this next battle and be blessed again with NED.....

Keeping you in my thoughts
Cindy

debrajo's picture
debrajo
Posts: 747
Joined: Sep 2011

Excuse my language ladies, but this whole cancer thing sucks! I am sorry Mary Ann, it just blows my mind to think what we all go through to get this far and then get shot down! Please keep fighting the fight...we need you to show us the way to go. I know I could not lead any one, I'm such a sissy! Please know this is just a set back...life is full of them! Best, debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I admire your spirit and courage, Mary Ann. Praying for you. Hugs, Norma

Double Whammy's picture
Double Whammy
Posts: 2274
Joined: Jun 2010

He's one stubborn guy, isn't he? I'm so sorry all the hard work you've been doing didn't at least slow him down. The SPARC information is encouraging, but the Medicare thing is frightening to me (who just went on Medicare in June). I, too, have a "supplement", but I sure worry about what all that means in reality.

I hope everything falls into place for you and the Abraxane is effective.

Suzanne

sunflash's picture
sunflash
Posts: 152
Joined: Aug 2011

Dear Mary Ann.........I know life isn't fair, but this just isn't fair, darn it! Hate this disease with a passion!
Sending prayers your insurance will approve your new chemo and it's just the thing to send Chester running for the hills!
Sending hugs, prayers, and more hugs........

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Although I seldom write, I have been watching and hoping that this was not the news. I know that you will be using all your many resources and we all will send happy thoughts your way - hopefully all of that will help the new chemo slow Chester down. Big hugs.

Cindy Bear
Posts: 560
Joined: Jul 2009

Not the news you or any of us wanted to hear. But you have a plan in place. Plans are good. Hoping and praying that the Abraxane kicks Chester's butt
Big hugs,
Cindy

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

I feel the same as Connie, I'm at a loss for words. I really really hate cancer. You are such an inspiration to me, you helped me when I was at my darkest moment. Gave me the courage to pull myself up and face the day with a new determination.
Sounds like your plan is in place, so you know what you need to do. Right now its a beautiful day here in NY.. I hope you have some sunshine where you are and enjoying the gift of today. Hugs to you!

soromer
Posts: 130
Joined: Mar 2011

Dear Mary Ann,

I'm sorry that you got discouraging news. I hope that you have the time to wail and mourn your optimism about the treatments that didn't work. They don't always, and it's so disappointing when they don't. Many, many hugs!

But now you have another option to pursue, which is good. I'm glad that you have enough information about your particular tumor cells to feel like this next treatment possibility has a strong likelihood of working for you.

I hope that you don't run into problems with getting insurance coverage from Medicare and your supplemental. If you do, however, please don't take no for an answer. There are other ways to get funding if necessary.

Peace and blessings, and my very best wishes for better news in a few more weeks.
Kate

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I am sorry that all of the alternative treatments you have been trying didn't work as well as hoped.

I, too, am glad there is a plan in place to fight Chester again. I can't believe an insurance company could even deny a chemo treatment. I'm sure you will figure out a way to get what you need.

In the meantime, I will be praying for you. You have always answered my posts and have been so encouraging to me. Thank you so much. I hope we all can support you during this time as you have always supported us.

Thinking and praying for you daily,
Rachelle

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Im so sorry to hear this news. Hopefully just another bump in the road. Wear some miniskirts to celebrate not having to shave!

Hugs,
Liz in Dallas

lovemycat
Posts: 43
Joined: Aug 2012

Hi Mary Ann,
So sorry to hear about Chester. Glad you have a new plan.
Praying that it will be successful You are such a strong
sweet lady.
Prayers and Hugs,
Helen

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

Have they come through for you, Mary Ann? I have been thinking about you a lot. Keep the faith.

Connie

Kaleena's picture
Kaleena
Posts: 1057
Joined: Nov 2009

Mary Ann:

I have been away from the boards for a bit and just saw that Chester is bugging you. I hope all goes well with getting your insurance and the Abraxene will send Chester back.

Thinking of you.

Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Abraxene is "off label" for uterine cancer. We will appeal but nurse said it may take months. In meantime I will start Doxil which should be effective also.

Why does cancer treatment have to be more difficult with these issues? Seems cruel to me.
I'm sure this has logic for others but not for me right now.

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

Me neither. When will you start?

Connie

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

I looked up Abraxene and it looks so similar to Taxol. I wonder why you don't go back on Taxol since it has been so long since you had the Taxol?

I hope you do okay with the Doxil. I am sure it will be effective for you. Will you start it soon. As always you remain in my prayers. In peace and caring.

Pat51
Posts: 111
Joined: Feb 2011

I am sorry to hear your disappointing news. You are right, you should not have to fight the insurance company too! It is bad enough to have cancer and have to fight this disease without fighting the insurance company to approve treatments!! It should be the job of the insurance company to help and support you, not make things even harder!!!

I will be praying for your complete response to the chemo.

You are in my prayers,

Pat

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

Mary Ann, I know you are using all your energy to fight Chester. Not a day goes by that I don't think about you.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

The plan is to start Doxil on Thursday. I have to start "cooling" my hands and feet on Wed every 4 hours in preparation for chemo. Doxil really ravages the skin apparently and it has me a bit freaked out. I tolerated carboplatin and taxol well so hopefully this will go well too.

We've had company so I have been busy with that up till now. Now it's back to me and trying to calm myself down.

Today I resorted to calling medicare again about denial of abraxene. I also called the manufacturer and they said they would appeal for me. I could also apply for patient assistance for free meds but I know we would not qualify. We have discussed paying for this ourselves but I costs $1000 per vial and I may need 6 for each round.

I decided to let the doctor decide tomorrow - which drug to get. I suspect it will be doxil since we can start this immediately.

I ask for everyone's prayers at this time. Thanks, Mary Ann

marieinlv
Posts: 39
Joined: Aug 2011

Mary Ann, I'll Pray for God to show the path for all involved to be clear, and fast. So Sorry for the waiting game, that is the worst of it. We're all thinking of you, and know you'll be strong physically and mentally. Hugs to ya, Marie

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

Hope all goes well for you I can understand your anxiety about the doxil. Others have talked about their hand and feet problems. I hope you can avoid any problems. Extra prayers coming your way. Sending an extra big cyber hug, too. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

very anxious and tearful about this. started cooling of hands/feet protocol yesterday. Nurse explained that doxil settles in fat cells and that hands and feet are very vascular and we use them so much that doxil will collect there unless blood vessels are constricted. Hence the regime of cooling for days before and after treatment.

They knocked me out with ativan and before I knew it I was done. I brought my ice bags to cool everything there too!! They probably thought I was nuts. But I will religiously do this. Everyone very patient and sweet with me today.

Now home to rest and drink cool water, ice chips and cool those hands and feet.

Thanks for all the prayers. Love you all. Mary Ann

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

I hope Chester is so uncomfortable he will flee and never come back. He should know he's met his match in you.

Connie

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

First one down! Glad it went well for you. I hope those ice bags help. I remember Linda talked about how typing even hurt her fingers. Take care of yourself and rest as needed. Keep those fluids going. In peace and caring.

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