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Keli

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Things are looking up -

Started the Study on Monday the 17th.

Meet with the Doc on the 18th and he told me he is giving me almost 2 times the "standard" amount of radiation. He is still feeling really good about the outcome of the radiation. So for the next 5 weeks you will hear the rest of the story. This study is going on until Dec 2010. I will be in it for 5 yrs -- I told my husband I will get the best of health care for the next 5 yrs -=- all the Docs want there Studies and trials to turn out well!

I was finally able to see the nodule in my lung and all I said was "holy crap" I was in shock. I really couldn't see in my mind it was this large. I didn't know the lung was so small comparative to the chest.

The Doc told me "Oh we've treated larger tumors than that" -- I think my eyeballs about came outta my head.

I still have 3/4 of my left lung surface in good shape. So when I take the Doc up on his 10 - 15 yrs he told me he'd be able to give me -- I will have no problem.

Kinda apprehensive about the radiation amounts but I'm not a specialist and hes done this before --

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Hi Keli,

Being in this clinical trial, I think you are right! You will be top priority for the doctors. They want to succeed! I think a ten to 15 year prognosis is an area of great hope. Plan on being around for much longer!

Judy in MI

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Keli, do you know that old saying "stepped into a bucket of #### and came out smelling like a rose" lol. You made me think of that. The study, the onc, the oncs attitude, your faith in him--I think you are already smelling sweet.

Good luck and keep us posted.

Judy in KW

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Well its been a learning curve for sure! I really came thru the Radiation quite well -- I have one left on Monday the 21st. I have been getting almost 2Xs the standard treatment and the side affects have been pretty minimal I thought. Skin burn on my chest and back. Also the radiation on my esophagus was not good but they got me fixed up with meds and i was eating in no time LOL.

Not really tired but I did make sure I didnt push it very often either. Still mowed the yard and did my gardening. That was the end of a tiring day but I got it done =).

I have a CT with contrast on July 21st -- part of the study -- the doc says it wont show anything but they have to do it so -- oh well .

I start Chemo again on July 7th Etoposide and Cisplatin.

Every 3 weeks again and 3 days each time =(

I always look up the side affects get to know a little about the poison they will infuse and It really honestly scares the living fecal matter outta me! Not so much the Etoposide but the Cisplatin is a nasty thing!

Still have my head up and trying to stay possitive as much as i can! Smiles to you all!

Keli

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Keli, you sure are a tough cookie and I mean that in the most complimentary way. I miss gardening and yard work but I seldom have the energy for it. I wish I could reassure you about Cisplatin but I'm not familiar with it. Hopefully someone will come in and say it wasn't so bad. Hey, it happens you know. Everyone responds differently to these treatments.

Good luck and keep us posted.

Judy in KW

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I also found out the type of cancer -- its anaplastic lung cancer. Still probable NSCLC. Thats what they have on my file.

I have had one heck of a time finding anything on it.

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Keli,

I just wrote a long post and the internet quit on me!

Anyway, Cis was doable for me. My worst effects were hurty hair - the scalp and follicles - I used Bumble and Bumble Hair Tonic (lots of tea tree oil in a pleasant form) to relieve it and it worked well! Also, fatigue, a bit of cognitive dysfunction, both mostly resolved in a short time. I did not reject any foods, but had no interest in coffee or alcohol, just as well. Calories burned quick - ate plenty of high calorie foods and still lost a few pounds.

Make sure you understand how to use the anti-nausea drugs they prescribe for home use - I was reluctant to use the recommended and as needed ones during the first round and suffered for it. Some of us have found the decadron (steroid) to be maybe worse than the nausea it prevents? Big crash after a couple of days of high energy.

Keep eating a little throughout the day, get plenty of rest, light exercise, and be tender with yourself and hoping you'll do fine.

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Most of what I found on the type of cancer came up as Thyroid Anaplastic -- and I went on a search for types of lung cancer and it came up with a very small mention at the end of a article that said it is caused by Asbestos and long term radon gas exposure. Thats all I have been able to find.

They say that radon gas is like the number 2 lung cancer killer -- then why dont they make it a code to mandate the pipes in all houses to be installed and cut that cancer in more than half?? I am going to look into this -- when a friend told me this it really kinda pissed me off -- If its true Im puttin on the boots LOL

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Kelli have you thought about asking our resident oncologist Dr West about your type of Cancer!?

http://cancergrace.org/

That site is also free and Dr. West goes above and beyond to answer all our medical questions!

Oh and thank you for being a Pioneer in cancer research!!!

((())))

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Still have my head up and trying to stay possitive as much as i can! Smiles to you all!

BIG smiles to you indeed. YOu have a heck of an attitude and I'm so glad to see this update. Keep posting and keep us posted on you. I look forward to reading and learning more!!!

Blessings

xoxo

K

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Hi Keli,

Best wishes for a successful outcome in your clinical trail,five years?count me in for following your journey every step of the way.My chemo consisted of 4 cycles of cisplatin and vinorobean(Dont how to spell it)I sailed through without any side effects,kept my hair (and the gray)did have a bit of constipation though,great to have you on board.

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Day 1 of the new regiment--so far Im great LOL -- Ive b een grumpy lately but thats just the weather -- also I am sooooo bored not working.

My Doc says I can continue with my profession when Im all done with this. Thats hoping that there is still work here for Electricians LOL!

Did you get to what Dr West said? Anaplastic Cancer is not necessarily SC and that it is fast growing and there is no set treatment for it as of today. -- Well I hope that I do get better and I as a Guinea pig can help with the future cases. We are all going to get there -- Its just a matter of WHEN.

When I come back I should be a DR! :mrgreen:

two more days this week - one hr each ---

Talk with you all later :D

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I am sooo depressed -- last friday 7/16/10 I found new lumps under my right armpit. All the nodes involved were on the left side. I see the doc tom. the 20th to see if its a node or crossing my fingers a reaction to the new chemo. I know what it means if its the nodes and i cant get past it.

I am in the process of walking away from my house because of the large payments involved and Ive been laid off of work for 2 yrs. The emotion of that alone is doing me in. Now I am looking at a possible stage IV -- I cant handle this anymore! I dont know what to do anymore-- my garden and escape from life is going to be gone. I cant stop crying - I just dont know what to do anymore.

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Keli,

I'm so sorry you are feeling so fearful, and worried about tomorrow's doctor appointment. All I can advise is try not to worry about it. It could be something other than that fearful place our minds always want to go. Hang in there, stay positive, and I pray they have a common sense logic to this tomorrow that will allay your fears.

Judy in MI

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Hi Keli,

I am really sorry to read of your problems,it is enough just coping with your illness,without the additional one with your home.Something important seems to be missing from your mailings,if you dont mind me reflecting,that is the support that family and friends can provide to help you through these difficult times.You have come accross to me as a confident,brave and determined person,and I know you will get through this period successfully.

It has been my experience,since my dx. that the many dark imaginings my brain could conjure up,never even came close to being realised.We all have had to accept periods of feeling really down in our cancer journey,but we should also realise and remember those wonderful occasions when we go to bed at night and can truefully say -to-day I had a really good day.From the outset of my dx,I would never have believed there were any good days ahead for me,now looking back I can smile at my own naievity.Hey, your doc gave you 10-15 years,my doc gave me 2 years,(and they are up in October-gulp)come on give us a smile.Love to hear more from you,look after yourself.

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Keli,

I'm praying that your fears about the nodes are eased. Radiation can have different effects so maybe it is a side effect of the treatment. All you can do is all you can do. Right now fighting for your health and your life is most important.

We are here for you.

Susan

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