Thursday, August 27, 2009

Thursday...August 27th...2009

Big day today...lots of information for us to digest....

First...Linda met with her Oncologist today ....followed by an infusion of Avastin. The Oncologist used two new words: "symptomatic" and "asymptomatic"......meaning a showing of symptoms and not showing symptoms. He described Linda as "asymptomatic"...that is, she is showing no outward signs of cancer. This does not mean she doesn't have cancer (she does)....rather it means she is not showing any symptoms of the cancer advancing. It could show up as balance problems....persistent headaches harder to control....body pains.....etc....etc. This is good news. He indicated the cancer "seems to be stable".

Now what? The EGFR test was never performed.....the lab directed to do the test claimed not to have received the order....to which the Oncologist was not surprised as they have had this trouble with the same person in the lab before. The order will be resent. We talked about this test before....it measures a certain mutation which indicates whether another cancer drug....Tarcevia...will be effective....or better....how effective it will be.

EGFR: Genetic Changes in Tumor Can Predict Treatment Benefit for Patients With Non-Small Cell Lung Cancer. This study showed that for some people who have non-small cell lung cancer (NSCLC) with a mutation (change) to the epidermal growth factor receptor (EGFR) gene in the tumor, treatment with the drug Tarcevia slowed cancer growth. The EGFR gene produces a protein that helps lung cancer cells grow and spread. This is a type of targeted therapy that targets faulty genes and proteins that contribute to cancer growth and development.

The results of the EGFR test are performed on Linda's original biopsy which has been frozen. On the 16th of September Linda will have another scan performed with the results on the 17th....the course of action will depend on the scan results as well as the EGFR test results....these results will give the Oncologist direction as to how to proceed with the next course of action as well as actions down the line.

Again....the goal is stability....control the growth of the cancer.....

The Oncologist is going to summarize things with Linda's personal physician as she had a bone density scan planned and the Oncologist says it will not be valid as she is on a "bone builder"....so cancel that. He also said the Avastin infusions she is on will cause hypertension so Linda needs to be back on her blood pressure medication....he also questioned the mammogram as the treatments she is undergoing would deal with any breast cancer as well.....

Lastly, the Oncologist was a bit taken back when Linda reported that information she was given about the bone builder she was receiving could worsen cancer.....we showed him the warning on the packets in the infusion room...he indicated she had read it correctly and advised her to "quit reading". This was a bit of humor....he is contacting the pharmaceutical rep to discuss that with him as this is untrue.

We told you this was a "lot of stuff to digest"......and there is much more.

Linda's right ear (at the top) has been bothering her....very painful....she is nervous that it is another bout with skin cancer. She was scheduled to be with the skin doctor (dermatologist) in a couple of weeks to examine the MOHS surgery done on her face for the basal cell cancer. We decided to call the doctor and see if he could squeeze her in today rather than wait....and worry.....he did squeeze her in.

Is it a new sign of skin cancer....NO....it is Chonrodermatitis Nodularis Helicis (CDNH)....and we did NOT make this up. It is a painful inflammatory condition affecting the ear. It is a benign tender lump in the cartilaginous portion of the ear (particularly on the top where the skin is thin over the cartilage). It is caused by pressure between the head....ear ....and an object.

Linda is deaf in the left ear and the right ear has the CDNH...duh!....uses a phone to the right ear...sleeps on the right ear....depends on everything with the right ear...hence the formation of CDNH. Again...we are NOT making this up.....but it appears that Linda persists in coming up with "new stuff" no one has ever heard of!!!!!!!

What now...Linda has to avoid pressure of any kind on that ear....including sleeping....phone use....etc....etc.. How is that done with a deaf left ear....good question. If the inflammation is not reduced, the doctor performs a biopsy procedure.....and if that doesn't work, he does surgery, laying back the skin on top of the ear....removing the abnormal cartilage..and then putting the skin back with stitches.

How is Linda doing? Great....good attitude for what she went through today. We went to the Redmond hospital to see friend Roger.....who had sudden severe abdominal pain after returning home from foot surgery....to be operated on immediately for a diseased small intestine section as well as cancer in the colon.....he is not a happy camper.....we hope things brighten for him as he is a special guy.

We will "lie low" for a few days and then head to Anchorage for a week.....

4 comments:

Cheryl Jones said...

Okay, Linda, JUST KNOCK IT OFF!!! We don't need you coming up with anymore weird and unusual medical conditions! Enough, already! ;-)

Glad you guys have continued to keep on top of your health and have worked so hard to understand everything you've been told. Also appreciate you translating all of it for the rest of us.

I really do hope your friend Roger can come to terms with what he's dealing with. I know it's not going to be easy for him. I feel for him and his family, having been through that colon cancer diagnosis with mom. But, hopefully his doctors will be agressive in treating him and will be able to rid him of whatever may be left after his surgery. With the two of you to teach him how to advocate for his health, and how to learn to live with the "new normal", I think he'll have a great head start.

Love to you both, as always.

Anonymous said...

Just thought I would let you know you are not alone Linda....Dad has CNH on both ears from sleeping on his side (both sides)! We thought he was the only one to come up with such a thing! Guess you two are just an unsual pair! We had never heard of this before either.
They are still working on his ears, but it seems to be working for him. Hope they get it taken care of for you! Have fun in Alaska.

Nancy, Jim and Joe

Anonymous said...

Whew! That is a lot to digest. Dave, you are doing a great job of explaining things to us....how do you keep it all straight??
Linda, what Cheryl said, Just knock it off! All in all, sounds like a good report. Say "Hello" to Alaska for us. One of these days John will move out of his tropical rut and agree to taking a trip up there.
Take care, the two of you. We are finally doing our Great Road Trip to Nebraska next week, which is a much shorter version than the one you recently took.
Marilyn

Anonymous said...

OK my question is...what about the barking neighbor dog??
Is this problem solved or are you so tired when you get home you don't notice him???
Wow what a whirlwind of a day you just had. I couldn't do it healthy, how in the world do you two do it and stay so positive? I want whatever it is you are drinking! (and Dave, I don't believe it is just diet Pepsi)
I really hope your friend Roger can beat this diagnosis. Depending on the stage, he has a very good chance. With Linda for moral support, how can he miss?
Love you guys. Keep on keeping on...

Claudia