pattimarzano

It amazes me sometimes that when we are at our lowest, if we reach out someone will be there. Thanks for that. I have a question here. I am dealing with extreme esophageal reflux due to the radiation. My esophagus doesn't know how to act it seems. I can eat nothing solid and a spoonful of jello feels like a tennis ball all the way down. Any ideas?

I am now in Stage III. What happened to stage II??

Well folks....last June I had to undergo 10 single radiation treatments for stage 1 lung cancer. Three months later the tumor had shrunk to half the size it was. Three months later, which was december, the tumor while still small was glowing in the pet scan and one lymph node in my chest was glowing. We decided to 'watch that one'. 3 months later, March the tumor has grown to it's original size and all of the lymph nodes in my chest are affected. I don't know if you remember but, I have Pulmonary Arterial Hypertension and we bleed so no surgery. I have Scleroderma so I have to be really careful with treatment around my esophagus. I am now on my 11th day of radiation with 14 more to go and I receive chemo every monday for the next 3 weeks which will make a total of 5 treatments. Then another PET and God willing it will remiss. I need some support here. I bounce from okay to a weepy mess. I just turned 61 and have been so darn healthy all of my life, living at 9000 feel altitude in a colorado mountain town for the last 30 years and doing everything you do in mountain towns, ski, snowmobile, climb 14000 ft mountains, I was involved in the live theater for 30 years and owned the only beauty shop in town. Now I'm spending my life in hospitals and taking 16 meds a day and I'm a mess! Scared to death. Angry. Whatever. Thanks for listening.

Thanks girlfriends. I get this spirit from my team mates. All of you. We are all in this together. I am in awe of you who have had all the treatments and emerged on the other side of the tunnel. What greatness. You urge me on in whatever direction there is open for me. Looks like it'll be Medical Marijuana at this point, but what ever....as long as it works, right?

I use it. I have a State license and a dr's recommendation. I started using it for Scleroderma and RA, then when the lung cancer hit I did my research and it helps appetite, so that stops body wasting, in fact he'll put weight on at a quick pace. I vaporize mine. I got my vaporizer at www.vaporbrothers.com It cost around 165 with tax. I would have loved the Volcano but it was almost 600 and now I understand they can no longer ship to America. If you use MMJ make sure you get the medical grade. It has no carcinogens, it is grown organically and the strains are unbelievably pure. Street pot could very well be poison, so MMJ is the way to go. Get a prescription, in colorado it is called a recommendation and do a search in your area for meet ups. Find support and a caregiver. Email me if you need help with this. Patients helping patients is the only way we will be able to legalize this medicine. Good luck girlfriend. pattimarzano@gmail.com

Thanks girlfriend. What kills me about this whole situation is University Hospital is a teaching hospital so all of the doctors are on salaries. They get paid no matter what. As long as I only had 2 rare diseases and was willing to do the clinicals they were great about paying and tests and treatment....they still are for those 2 illnesses...but when the cancer reared its ugly head they backed off and started giving me such a hard time. I hate it when it is so clear that its all about money. This will be an expense for them. As you know Cancer isn't cheap. But I also know that there are grants, donated monies, etc etc etc but they don't want to give me any of that because I can't do the expensive treatments and they consider it money wasted because I have other terminal illnesses so they don't care if I get any relief or not. What they don't know is my grit. I will dance on their graves. It might be with an oxygen cannula but I WILL dance on their graves.

My daughters sit in worked!!! We have an appointment on wednesday the 23rd at University Hospital. I'll let you all know whats up. Thank you for all the caring and all the good advise. Perserverance is where its at I suppose.

I spoke to the Social Worker and told her what was going on. She asked me if I had medicaid, medicare or any insurance....I told her no but I had CICP which is Colorado Indigent Care Program and that I had it well before the cancer diagnosis, so why should I need anything else at this point to just see an Oncologist. She agreed with that and pulled up my med file. I pointed out to her that this growth was first found in June 07 by CAT and it was recommended to do a PET which was done in July. It showed a nodule and some shadows that 'could be' malignant with lymph nodes involved. It was 1cm. It was recommended I do a needle biopsy because my heart is bad and I can't undergo anithsetic. The needle biopsy was done in November of 07 and it showed Severe Squamus Cell Dysplasia possibly with cancer nearby and recommended another biopsy. The doctor felt that because of the PET positive test that this biopsy was wrong and the Oncologists she was talking to agreed. They all wanted a 2nd biopsy. The second biopsy was done on the 1st of March and it showed Non Small Cell Carcinoma and the tumor is now 3mm. It has tripled. Her response to all of this was "Oh, that's not good." I agreed. She said she'd get back to me in one or two days. I said "Thank you" and hung up and started logging.....I know that without treatment, the average survival rate for LC is 8 months. I'm at 9 and am doing okay. Who knows for how long? The meds I take for PAH make my breathing easier....why aren't I on Iloprest? Its a PAH medication for gosh sakes!! They are using Iloprest for cancer these days I hear. I don't know...maybe my Tracleer will do the same thing as Iloprest...who knows? If I were a drinker I'd need a Margarita right now.

Thank you all so much. I'll let you know what happens after tomorrow. Before my PAH specialist left she told me that chemo was out because of the damage done to my heart from the right heart failure and that radiation was out due to the condition of my lung from the Scleroderma so I'm pretty perplexed as to what else there is as I know nothing about cancer. We'll see, won't we? Thanks everyone for your kindness. I was so hoping I could find this kind of support and luckily I did.

My NP suggested that too a few weeks ago, so I went and said I was SOB and had chest pains, well of course I didn't and they watched my Pulse and my O2 in my body, and did all the heart monitors and of course they showed nothing. At that time I let them know that I had been diagnosed with lung cancer and could I please talk to an Oncologist. There is no "on duty ER Oncologist" since lung cancer isn't an emergency room problem unless its related to treatment of which I hadn't had any. So they released me and pretty much said 'nice try, don't do it again'. I am going to try the other suggestion of a social worker at the hospital. Tomorrow I'm going to call the NP again and tell her I STILL have heard nothing. I have Pulmonary Arterial Hypertension and Scleroderma, so I have pretty good doctors, I just don't have any insurance yet and medicare should kick in this year. Not that that'll do much good anymore...a lot of colorado doctors aren't taking medicare. This is too much. I am beside myself and I know stress is bad. I'll let you all know what the NP says tomorrow. Maybe I should just go out there to the hospital and refuse to leave until I have an appointment?

I really don't know what else to do. I had the second biopsy, ordered by my Pulmonary Hypertension Specialist, who has moved from Denver to Alabama and is no longer here. The biopsy came back non small cell carcinoma in a tumor in the left lung. I have had zero treatment. I have no insurance, but am set up through the Indigent Program at the hospital. I am 60 years old and am truly being a squeaky wheel and now they just don't call me, they have a nurse call and tell me to sit tight. It's not me that I'm worried about 'sitting tight' its this damn cancer that I am certain is growing. That's what cancer does isn't it? I'm sorry to vent like this, but this is ridiculous. If I had Blue Cross Blue Shield I'll bet I'd know what stage I'm in and whether or not the lymph nodes are involved.

Yes I'm doing aromatherapy, mind visualization, I'm currently reading Eckhart Tolles A New Earth and participating in the online classes. I'm trying to center spiritually as best I can. I'm juicing massive amounts of anti oxidants and treating with anything that is reasonable such as broccoli extract, grape seed extract, turmeric, immortal mushrooms and the sort. What complimentary treatments are you using and do you have lung cancer? I still don't know if the lymph system is involved yet or what stage I'm in.

Well it is now non small cell carcinoma and yesterday I got a recommendation for medical marijuana so I'm going to try to treat this with THC. I've been reading alot of good stuff about how it is shrinking tumors and what all.

I had a second biopsy done and this time it came back non small cell carcinoma. I still haven't seen an oncologist yet. This waiting is really getting to me. I have no insurance so I've gone into this on the indigence program. I am so depressed I can hardly drag myself out of bed. Once I'm up and moving it gets better. I wake in the middle of the night with all the stinkin thinkin going on in my head so I'm tired all the time. I'm just tired.

Turmeric is one of the alternative therapies that I use. I take one capsule everytime I eat. I'm taking 1500 mg a day. My doc says Turmeric is food so it is okay to use as a supplement.

They make a vaporizor now that heats the herb up to a temperature below smoking it and you inhale just the vapors. This way you don't take in any of the smoke or anything bad, just the vapors of the THC. It is an incredible pain reliever. Eating it also helps but you need to know the grower. Pesticides are so harmful. Medical Marijuana is the way to go, but finding a doctor to prescribe it is an issue even in States where it is legal. Then getting the prescription filled is another issue. If I had a prescription for it personally, I'd grow my own.

I was recently diagnosed with Squamus Cell Dysplasia. I have Pulmonary Arterial Hypertension, a rare disease affecting the blood pressure in the lungs only. There are treatments, but no cure. I have Right Heart Failure as a result. I also have Scleroderma, another rare autoimmune, connective tissue disease, again, treatment, no cure. Then I get this Lung Cancer diagnosis. I can't do another biopsy because my lung collapsed during the last one. I can't do Chemo because of the PAH and RHF, and I can't do radiation because of the existing lung damage from the Scleroderma. This left me with no options other that what I could do for myself. I found a couple of great web sites and researched hours and hours of data. I am currently on an all raw fruit and veggies, mostly juiced, almonds, 15 grain minimum bread, one slice a day. LOTS of green leafy veggies and carrots. Juicing is the only way to be able to consume the amount you need to fight this. NO refined sugar. No animal or fish. NO dairy. No caffeine and no smoking of course. I feel better than I've felt in 2 years. The weight loss is causing my heart to not have to work so hard. I don't know yet, if there is anything to this, but I have no other choice but than to heal myself, and I believe that I can do that. I am still under the care of the PH doc and the Rheumy and they both say to do whatever I need to do and they will continue to treat the other 2 illnesses as I need it. I haven't found an Alternative Physician yet, but am looking.

Thank you all for the warm welcome. It seems that no Oncologist wants to deal with me. First, no insurance. Then, the other illnesses, RHF, Scleroderma, PAH are more serious than this or so they say. I've begun intense alternative treatment with foods, herbs etc etc. My PAH doc is still trying to get one of her colleagues to see me, so we'll see where that ends up. I'll keep you posted. I just had my 60th B-day and since I've started all raw foods and veggies, I feel pretty good! Actually I haven't felt this good in over a year. Maybe there is something to this.

Hello I'm new and have been diagnosed with severe squamus cell carcinoma dysplasia of the left lung. I'm not exactly sure what that means and am awaiting a contact from an oncologist. I have a small tumor in the lower left side of my left lung and it is growing. I have Pulmonary Arterial Hypertension and Right Heart Failure, and Scleroderma so chemo or radiation isn't an option, nor is surgery. I know nothing of cancer. I've been trying to deal with the other illnesses when this was found. I am 59 years old and have a pretty good attitude. I don't let myself think about the fear too much because I actually feel great at this point. Well....as great as you can feel with 3 life threatening illnesses ). I have been eating and drinking only fresh fruit and veggies, mostly juiced, lots of soy and mega amounts of green leafy veggies. That seems to be what most of my internet investigation points to. I would love it if someone would just give me some hope, or some idea of what is ahead for me. I need peers at this point that can relate to where I am.