CAS1

Hi CasI, many thanks for your answers to my question....I got pretty much interested in the 230 muts test you mentioned.....Please may I ask you how much did it cost for you to have such a comprehensive test done? It would be great if I could send a tissue of my tumor for them to test it for me.....I don't believe hee in Latin America we have a facility prepared to tests like that.....Many, ,many thanks for your help and willing to listening to your input

I haven't tried yet..thanks for the tips...I wil try after the surgery to look for any possibility to get these meds.

thanks for your answer. good luck to you

Hi -- you answered my post and I thank you. You said the epiglottis could repair itself. I was lead to believe that once it was "broken" there was no fixing it. Also, can you tell me where to look for replacement info. I really appreciate your input and look forward to hearing from you. Laurel

Thanks for the good words

Thankyou for your words of encouragment l have a bible class l attend and its wonderful to get away it is just hard to understand why he directs all his anger towards me l want to thankyou for commenting today things are better l will get some literature on all of this also.

Hi neighbor. You are not far from where I live. I'm glad you believe in the power of Jesus. I thought these words would help
I have Cancer. I will not be afraid because God is with me. I will not be discouraged, for the Lord is my God. If you are afraid and discouraged, be honest with the Lord and tell Him how you are feeling. Then, choose not to be afraid and to be encouraged. Trust the Holy Spirit to replace your fear and discouragement with God’s confidence, peace, and joy. God will strengthen me and help me. God will uphold me with His righteous right hand. This disease will be confused and humiliated. Every demonic attack will be destroyed and come to nothing. I will look in vain for those who tried to conquer me. The LORD my God holds my right hand and I will not be afraid because He has said that He will help me and I believe Him.Amen
Blessings CELLKILLER

Hi CAS1,
Just wanted to thank you for all the "likes." Also thank you for all the research you do. I read the one you posted about lung cancer and HRT and found it very interesting.
--Susan

My PET scan went well today,thanks for your good luck wishes !
Now if I can just get through the surgery I'll be very happy. Hope you're feeling well. Zoe

Thanks so much,none of us like this.Can't wait for it to be over !!! Zoe

Wow, CAS1, you hit the nail right on the head! A LOT of people have NO IDEA what to say/not say, do/not do for a cancer patient. I believe a lot of my "mission" (if you want to call it that) is to teach people it's OK to smile at a bald woman & ask "how are you doing TODAY?", to engage in small talk, say hello, whatever. I think once people have a "successful" interaction with a cancer patient, it breaks down their inhibitions to do so again in the future. But gathering shampoo etc. for cancer patients????? WOW. I would have had to speak my mind at that idea! Thanks for sharing this.

Hi CAS1, Thanks for the info on the smart patient site. I joined and they are supposed to send me an e-mail when approved. Anxious to talk to other PD1 patients. My last blood work and CT scan showed liver enzymes/levels too high and will have to wait out the two week schedule to see if I can have infusion next time. CT showed nodes either stable or very slightly enlarged ( Oncologist says could be somewhat enlarged due to the effects of immune system fighting the cancer) My thyroid is fried so I have been taking medication to try and get the levels at least up to somewhat normal. They've had to up it 3 times. That is a very minor issue and once levels are stable I will just take the pills. Hoping this will settle down and I will be on a routine schedule and HEALTHY!
Thanks for keeping up with me. I have gotten so much information from your posts.
LillyL

Thanks for that info...I might have to try that.

Thanks for your answer. It takes me a bit to learn how to use this forum. A day at a time. But I don't know about doing the treatments. My sister made it a year with treatment. Wouldn't a few months and no treatment be same

I have non small cell lung cancer. I took the same chemo drug as you. With no problems.Except weight gain.I'm having IMRT radiation. At first it was a piece of cake ,but now I'm in my 7th week and oh boy, radiation is kicking my butt. Fatique, radiation burns front and back, and my throat hurts. It's hard to swallow. I chew some food, swallow it and need a drink of water to get it down.My radiation oncologist gave me Malox/Lidacain to drink 15 min before I eat to help me swallow. Dentists use Lidican for numbing patients.I have 3 more weeks of treatment It'sgonna be Hell.

Thank you for all the info and just being there for me... I truly appreciate the support. god bless you and be well

CAS1. Thank you for your input. I need to research some of the information from Craig, I don't understand some of the anagrams! I haven't had time to research the Inspire site, will keep a healthful distance from some responses. I asked the Nurse trial coordinator about getting together with other trial patients, she indicated they could not give out information on patients, which I certainly understand. I did tell her if anyone else was interested in connecting that I would be agreeable to her giving my information to them.
Thanks again for all the help and information you've given.

It's ok if you lost it. If there's one place you can go for understanding, it's here!

Thank you. Flattery will get you everywhere. (grin)

Hi CAS1, I read your journey and had a question if you don't mind. What stage was your cancer when you were diagnosed? I am 48, diagnosed in Feb with stage iv non small cell. I noticed we had the same chemo meds. What kind of surgery did you have?
Thank you,
Dawn

Hi Cas. Just FYI. There are 2 folks on board. Blackmama & Bigmama. Blackmama is the lung cancer lady. Bigmama is the one with the daughter who has brain cancer. You asked Bigmama about the lung surgery, which is probably why she didn't respond. Cheers!

Oh by the way. You can view questions needing answers by simply clicking on the questions tab above and then using the filter under the search bar to only show those needing answers.

Hi Cas,

As some one who likes to do research, I thought you could help with the following question.

https://www.whatnext.com/questions/does-anyone-know-of-any-current-open-clinical-trials-utilizing-immunotherapy

We have a number of unanswered questions that came in last week. Perhaps you can help us get them answered by doing searches on WhatNext for people with specific experience. For example see how I answered the question below or doing some offline research. It is ok to refer people to sites other than WhatNext, especially if they help people.

https://www.whatnext.com/questions/does-everyone-get-hot-flashes-on-tomoxifan--1

Thanks,
David

Hi CAS1,
Hope your broncoscopy went OK. I had one but it was during my lobectomy to biopsy some lymph nodes down there, so I did not know anything about it. It is probably a good thing. I understand they have a special magnetic broncoscope that can be treaded down into the deep corners of the lungs. Is that what you had? It is nice to have all this new technology/medicine that is coming out all the time.

It is interesting that some people can regrow their air sacks. I did not know that. The body is an amazing thing. It goes through a lot, and then tries its best to fix what ever is broken on its own. I am impressed.

You said that your other lung is filling in the space after your lobectomy. Did you find shortly after your lobectomy that when you bent down to tie your shoes or whatever that you had trouble breathing and you got dizzy? It felt like something flopped into my remaining lungs. That is what I experienced. It is much better now. The doctor explained to me that when you have an organ removed and there is an empty space, the other organs move in to fill it up. The liquid in there also gets more jelly like in time, since the organs don't like empty places.

Now when I get down it is mostly that my jelly leg-muscles don't let me get up without pushing off the floor or pulling up from a book case or other piece of furniture. I am hoping with exercise my muscles will come back and I will not get short of breath as easily. I am determined to get back to a healthy life. You are so right. We have to stay strong, and be positive. We ARE going to beat this!

Yes, we love Lake Tahoe and used to do a lot of hiking there. Both my husband and I as children spent a lot of time hiking in the Sierras. My husband went to Meeks Bay every summer with his parents. My grandparents built a cabin near Echo Lake (off Hwy 50) where my father and his siblings spent their youthful summers hiking and fishing. My Mom & Dad took my sister and I up there every summer for our vacations. We all have wonderful memories there. The cabin is still in the family (my uncle's family), and in use all summer with their five children. The elevation may be a little high for me (7,000 feet), but when I can, I might take my little oximeter with me and try an easy hike to see how I do. I don't want to get too far away into the wilderness and then find out I need oxygen, so I will have to be careful.

Glad to meet you. Write any time. Take care.
--Journey

Hello CAS1. Thanks for the posts and info on trials, etc. I'm not too far from you up north of Madison. You are quite hopeful and I appreciate that! Sounds like you are doing quite well with exercise! I just rode my bike up a huge hill last week . I expected to have to walk the bike up the hill, but I didn't. 3 mile ride, (Lobectomy mid March) took my dog on leash, which doc told me not to do, but I did wear my helmet - on warfarin with bloot clot, thus the advice re: no dog.
Anyway, thanks for your positive messages and sharing.

Hi CAS1,
Thank you for your answer about airplane travel. I had no idea that the lung could burst! I have been walking about 2 miles for daily exercise on the level area. I have not attempted the hills around me yet. My doctor told me to buy an oximeter to see what my oxygen level was at 7,000 feet (Lake Tahoe). I did go up to Lake Tahoe last year, but did not do any real walking, and my oxygen level was lower than normal, but OK. I did not pass out. Even though I had one lobe of my lung removed, I generally run about 99-100% at lower elevations. The pulmonologist said I was unusual; the body is somehow compensating for the lost lobe. I will talk to my doctor before I go any place. Right now I can't go any where since I am taking care of my 99 year old mother who is more dependent on us. The travel idea is more of knowing what is possible to dream for in the future. Thank you for your help, and best wishes to you.
--Journey

Dear CAS1,

I searched for the poster for brain cancer to which you referred and didn't find it. I did find a teenager (18) with a type of brain canceer, but I don't want to make the error of researching and replying to the wrong mother on such a grave issue. If you'd be good enough to cut and paste and email me, , I'd be happy to do research. I need as much information as possible if it's available, otherwise it becomes somewhat useless (for them perhaps more than me). Such as Stages, the exact name of the cancer, etc. Thanks! You also mention there are a mother and child involved.

Hi CAS1,

Sorry, I did miss that poster. Is it just brain cancer in adults and children in general or is there something more specific? I shall try to search for the post, but I did mention to Greg that I'm not on the site as often as I was because my daughter was hurt on the job (she's a Paramedic) and I'm helping to care for her. I'm happy to research for people, but am hoping it gets a bit more specific than just brain cancer in children and adults.

Thanks,
Aliza

I'm doing a Happy dance for you. Great news about your scans.

I can't seem to find the post for PDL-1 - can you send me the link?