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new to lungevity-sclc ex doing very well but worried&anxious


domsdoinit

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Hi there!

My name is Dom I live in Columbus,Ohio,diagnosed mar 2011 with small cell-I was having some side effects from hiv meds and the PC was doing a lot of blood work and saw my sodium was low-he called and told me to go to the ER-they found the tumor then.

I also have had HIV since 1987-just started meds a fews years ago-numbers are good and undetectable.

I am male,50 years old-VERY active and healthy-I own a professional dog walking and pet sitting service here in Columbus-I do yoga daily-workout regular-probably walk 15 miles a day-I juice carrot/beet/apple/ginger/garlic with powdered wheatgrass added. I am almost completely raw-I do eat chicken or fish maybe 1 a week each-otherwise I make protein drinks from Whey Protein,yogurt,almond milk,blueberries.MY diet is full of anti-angiogenisis.

I pray,meditate,journal,see a therapist weekly.

I am not taking any supplements,or anti oxidants-I am getting everything from my diet during chemo.

I have had NO side effects from chemo..I have worked fulltime even chemo days-my hair did start to thin,so I shaved it off and still shave as it hasn't all fell out.

Originally they thought it was limited,I was on my way to the setup for radiation to my lung when they called and said that they had found small mets to my liver and ruled out radiation.

I started carboplatin/etoposide-after 2 rounds(3 infusion every 4 weeks) they did scans lung tumor reduced-liver mets almost gone and dead tissue from bone mets that they didnt even see before..

I was receiving free treatment and was going to the community clinic-I had 4 different oncologists in 4 visits-when they were giving me the results for the scan they said Excellent especially for stage 4-I was shocked-I didnt know I was stage 4-When I asked about it the oncologist looked at me and said you have stage 4 small cell cancer and your prognosis is less than a year-I though i was going to pass out...when I asked about it he got perturbed and left the room.

So I had good news and BAD news to stomp it out..I decided then and there that I was going to have to go someplace else-I got a referral from my PC to the James Cancer Clinic one of the big NIH recognized places.

When I went for the consult-they seemed surprised that I was there, they said "people don't usually switch if things are going well and you are doing very well" I told them about what happened and they said you are in the right place-the new onc only does lung cancer-she said that she did have clinical trials for me,I asked if she had long term survivors and she said yes 2,3 4,5,7,and 11 year. She is from Egypt and I couldnt understand her well but had a friend with me and he said yes thats what she said.

I have done round 3. I see the old docs tomorrow for round 4-they said all they were going to do is 4 rounds...I have scans appt setup at new place for july 8th.

Anyone have any suggestions?..I think I am doing well-other than the sodium issue I had no symptoms-the sodium issue has passed as the tumor has gone down.

I am interested in the medical as well as alternative--any long time survivors?

I am a very determined person and I am going to do anything and everything I can.

I am used to managing disease--are my expectations unreasonable.

Oh I may have forgot to add..I feel and look great! Tan, healthy,muscular,great appetite, sleep well.

I have been reading alot of the entrys on here and in inspire.

I am anxious, and depressed...I feel guilty for being so as i am doing so well..but I am soo afraid that things will change.

Can anyone give me any info?

thanks alot

hugz

dom

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Welcome Dom. I'm tired just looking at all you do.

My understanding is that sclc is staged as limited or extensive and since yours has spread to the liver, that would be extensive. It is great that you are without symptoms and healthy and fit - it serves you well.

Since last week was the 30th anniversary of the first diagnosis of AIDS, it was very interesting to read the statistics and the amazing progress that has been made towards a cure. We can only work to make such things happen for lung cancer too. Still looking to make advanced stage disease a chronic and manageable condition.

One of my favorite stories on this site is from Don - he was dx with extensive sclc in 2003. He's still very active, training horses, etc. Here's a link to his post:

viewtopic.php?t=18395

That should make you smile.

Try not to worry about doing well - enjoy it. The pathology of each person's cancer varies so that we have no way to know how well anyone will do on any treatment. You've done a lot of work to create an extremely healthy support system with all that you do to maintain your health. As you have read, plenty of otherwise healthy people get lung cancer. For many, doing something in the awareness/advocacy area helps with the "guilt". Or reaching out to others.

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Welcome, Dom! Glad you found us!

You were right not to let a doctor put an expiration date on you. They can throw some grim statistics at you, but statistics are just averages, and you'll find others here who have survived a long time after doctors told them they wouldn't.

It sounds like things have gone very well so far for you. Here's hoping you continue to do well. Keep us posted.

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Welcome, Dom. I don't know how much help I can be, because I had NSCLC and had surgery followed by chemo - different "poisons" than for SCLC. On the other hand, I did change Oncs 4 times! I moved after the first surgery/chemo and that accounts for the first change. After that, in FL I tried one Onc. who didn't return phone calls and offices weren't very clean, then one who didn't listen to me (neither of us - hubby and me - liked him). Finally went to, as you described yours - "a NIH-recognized cancer center" - MD Anderson Cancer Center in Orlando. By then I had finished chemo a second time (I had a recurrence 18 mo. after completing the first chemo), and am just getting follow-up care, but these people are much more interested in me and more willing to share info/explanations than the other doctors. Your change was a good decision!

Being a 24 year HIV survivor is amazing. Congratulations! Does that interfere with your cancer prognosis? Well, I guess we don't really like to talk about a prognosis as who knows or can read the future.

Good luck and please keep us posted on your progress.

Muriel

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welcome Dom, Sounds like you're well on your way along the journey. You'll have every emotion there is . Guilt is normal. We all will listen to any updates you want to share. Good luck.Keep up the good work.

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Welcome Dom,

Sorry to hear about your dx,I was dxd with NSCLC in Oct 2008,following chemo and surgery,I was looking for some survivor stories that could give me some hope of a future,my GP dismissed my request to return to work,telling me to take some quality time out,since I had only 2 years max to live.What a charmer,well one night I bought my local evening newspaper,in it was a feature of a guy who was starting up a Lung Cancer Support Group in a hospital in Glasgow,what I went on to read was just the medicine I was looking for.The guys name is Robert Lowe,in 1993 he was diagnosed with advanced SCLC,his doctors gave him only two months left to live,Robert didnt give in,he demanded a maximum attempt by his doctors to give him treatments that would extend his life.During his chemo,he was hospitalised,and was so ill going through this treatment,his family were called out to his bedside as the doctors didnt think he would make it through to the next day.Well Robert did make a recovery much to everyone's surprise then in 2007,he was diagnosed with NSCLC,had some treatment and is now recognised as the UK's longest survivor of both types of Lung Cancer.

Well I enrolled as a member of Roberts LC support group over a year ago,Robert and I have much in common,both Glaswegians,brought up in the same district,went to the same schools,despite being 10 years my senior,we shared the same teachers,each time we meet its non stop laughter,this guy at 71 years old is also the UK's oldest,youngest teenager,and I am proud to have him as my friend.

Dom,I wish you well as your treatments commence,dont take any put downs from people who ought to know better.Just reading of your story of personal courage in the face of adversity,I know you can be another Robert.Keep the faith.

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Hi Dom,

Your story is remarkable! You are remarkable. Anxiety and depression can be a side effect of this horrible disease. If it is affecting your lifestyle, I'd talk to the doctor about an anti-depressant. At the same time, given how great you feel, and how fit you are, my advice is to go out there and LIVE!

None of us know how long we're going to live. I read an interesting quote the other day. It said, "As human beings, we have a terminal disease we call mortality. The current death rate is 100%".

That is not a sad statement, it's a true statement. And none of us are given any guarantees. So live as you are, with value, and full of richness.

Like the others said, Doctor's can't tell us how long we will be here. Let's enjoy while we are!

Judy in MI

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  • 2 weeks later...

Welcome Dom,

I agree with the others and I'm so glad you got a second opinion! I will be keeping you in my thoughts and prayers. Please keep posting and keep us posted on how you are doing.

Hugs,

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Welcome Dom. I am so impressed with all you are doing to maintain your wellness in spite of HIV and Cancer. I am glad you switched to another treatment center. We don't believe in predictions here, we are individuals not statistics.

Like you, I was very healthy when dx'd and was devastated to hear I was 3b (would be 4a under the new staging system). I've had no surgery or radiation but like Muriel am NSCLC with different chemo. Don't feel guilty about looking and feeling well. The healthier you are often translates into handling treatment well. That's critical to beating chronic lung cancer. And don't be afraid of encountering bumps in the road. I have and always seem to bounce back.

Most of all Dom, keep posting. We are interested in your progress and are here to applaud when you are doing well and support you when you are feeling down. I believe fear is always lurking down there somewhere for all of us.

Judy in KW

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Hi Dom,

Sorry your are going through this. Like you, I was diagnosed in March with ext SCLC. I finished 4 rounds of chemo and 14 whole brain radiation treatments. I started feeling so much better off of chemo, I started working full time again.

You sound amazing.

Please know that the anxiety (along with any other emotion) is normal. I feel we are all in this together. Please give me a holler if you want to talk to someone going through the same stuff as you.

You are in my prayers.

Karen

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