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Appointment with the onco left us all frustrated.

camul's picture
camul
Posts: 2038
Joined: Dec 2010

Hi Everyone,

Still no more chemo as my immune system is wiped out. I have to agree on this, the last few months I was nauseated and exhausted for 5 of 7 days, and the other 2 were not good, but tolerable, with one infection after another.

Results of the scans were frustrating for everyone to say the least. Pet showed no evidence of Metabolic activity. This should be great news, however, the last 2 showed the same and followups with ct and bone scans showed new tumors and growth in the liver. On this one, we decided to follow up with an MRI to the hips and pelvic where there is increased pain.

Hurts to sit, stand, lay down, and walk. The MRI shows damage, excessive fluid and edema throughout the pelvic, hips and spine, to the bones, muscles and soft tissue. The radiologist suggests some of it could be bursitis caused from radiation damage, some from tumors, some from bone damage from tumors too numerous to count (this always makes me laugh) or it could be from something else? Ibuprofen will hopefully help the swelling.

MO wanted tumor measurements to determine growth and risk for fracture. None of this was noted. The only comparison made is that scans are consistent with previous scans of mets. No mention of the lesions in liver, connective tissue or risk for fractures.

He is skeptical of the pet scan, but I am getting weekly Herceptin infusion again just in case. Pain dr is also skeptical as the last sentence on the pet scan notes tumors too numerous. Good news is no hip fracture, but the scans didn't really answer anything. He will hopefully be going over the scans with my ro!

So I am just going to get back to living and hope for the best. Going with family to Idaho and Yellowstone for 5 days then hopefully to Sacramento in October. Just trying to figure everything out. This uncertainty has been so hard on my family, just trying to find a peace through all of it.

Thanks everyone,
Love
Carol

MAJW
Posts: 2515
Joined: May 2009

The frustration you feel is understandable.....but as you said, just keep on living....it's all one can do....I am so glad you're going to Idaho....hopefully just the change of environment will be refreshing to you....and then onto California....you go girl! I think of you often and continue to keep you in my prayers....

Wishing you better days...
Big hugs, Nancy

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

and contradictory. I hate that. We just want to know what's going on and sometimes, with all these conflicting test results, that's just too much to ask, I guess.

I'm so glad to hear about your travel plans. Try to enjoy every moment you can and have fun.

I think about you every day, Carol, sending positive energy your way always, and keeping you on my prayer list at night.

Love and hugs, Renee

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

No wonder you are frustrated. What a confflicted set of reports. I am so glad you are going traveling with the family. Those should be great, beautiful, peaceful, restorative, good-for-the-soul destinations. Hopefully, when you return the docs will have sorted out the test results more and be led to prescribe the best next thing for you.
Wishing you a safe, enjoyable, and comfortable trip!
Angie

New Flower
Posts: 3991
Joined: Aug 2009

No wonders why you feel this way. Our lives should not
depend on inconclusive tests. Traveling is always brings new experiences and emotions.
Wishing you an easy travel and enjoyable time with your family.
Hugs
New Flower

debsweb18
Posts: 190
Joined: Jun 2012

Sounds like you need it.

Deb

trixytwo's picture
trixytwo
Posts: 59
Joined: Nov 2011

I understand the pain and frustration. Hugs and prayers

Deb

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

Wow all of that seems confusing. So hard to understand. Iope you get some clarification. good for you that you continue to live your life. i hope your trip is wonderful, and the herceptin does the job at keeping the beast down.

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Well, welcome to my state, Carol. I think of it as mine since I'm the only person that I know of who posts from Idaho! If you're flying into Boise, let me know. Maybe we can meet up. Sorry that you are dealing with so much pain and uncertainty. I'm not sure which is worse. xoxoxo (gentle ones) Lynn

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Sorry, my computer is really acting up.

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Sorry

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Sorry

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Sorry

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I too have had conflicting reports. The last one was ridiculous! It was a scan that came from the same facility I always use for these scans. I couldn't understand how the reports could look sooooooooooooooo different. I am guessing that my thoracic surgeon at Sloan Kettering is thinking the same thing because he wants me to do the next scan at Sloan. I am relieved to say the least about doing this. (even though I have to take a trip to NYC very early in the morning)

My thoughts are with you as you venture through this unforgiving maze of tests, tests and more tests.

I am thrilled to see that you are taking a wonderful trip away from it all to Idaho and beyond. Enjoy every minute of this trip with your family. It sounds lovely.

Prayers to you and yours
xoxo
Mary

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

I am so sorry that you did not get the clear cut answers, or results. It sounds
so confusing, and frustrating. I must say, your attitude is that of a STRONG
Warrior.!

Such a blessing to be able to go to Idaho, and Yellowstone. Have a great time.
I am praying that your pain does not keep you from any activities, or sightseeing.

Have a terrific time with your family -- You deserve it, Miss Carol.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Carol, I applaud you! You've got constant pain, conflicting reports and scans, multiple docs with multiple appointments and tests...and you are still living your life the way you want to!! YOU GO GIRL!!!!

Hugs,

Linda

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