pattimarzano Posted December 1, 2007 Share Posted December 1, 2007 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. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted December 1, 2007 Share Posted December 1, 2007 Wow Patti, so much to deal with! You have such a great attitude and outlook. Please keep us posted on how you are doing. Warmly Christine Quote Link to comment Share on other sites More sharing options...
pattimarzano Posted March 8, 2008 Author Share Posted March 8, 2008 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. Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 8, 2008 Share Posted March 8, 2008 Hi, Patti, thanks for the update! Are you using any mind-body techniques such as meditation or visualization to complement the special diet? I believe that can be useful in conjunction with just about any approach, including standard chemo like I'm on, but especially with someone who has limited options. Wishing you the best, with lots of Aloha, Ned Quote Link to comment Share on other sites More sharing options...
pattimarzano Posted April 4, 2008 Author Share Posted April 4, 2008 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. Quote Link to comment Share on other sites More sharing options...
pattimarzano Posted March 17, 2009 Author Share Posted March 17, 2009 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. Quote Link to comment Share on other sites More sharing options...
pattimarzano Posted March 17, 2009 Author Share Posted March 17, 2009 I am now in Stage III. What happened to stage II?? Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 17, 2009 Share Posted March 17, 2009 Hi, Patti. It's been a year since we last "spoke," and there's been a lot of stuff going on, but the good news is that we're both still here, and even better, there's apparently no evidence for either of us that the cancer has spread beyond the chest. Maybe we can keep it that way. But please don't wait another year to post an update! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 17, 2009 Share Posted March 17, 2009 Patti My heart goes out to you. Pretty damn scary when things go OK for so long and then BAM - like getting hit with a shovel, isn't it. You hang in there girlfriend. Hopefully the chemo will kick the cancers butt. Its OK to be scared, we have all been there, done that. I agree with Ned - at least it doesn't seem to have spread to other parts of your body. Hoping and praying for the best for you. If you need to talk, you can PM me. Keep us posted, please on how you are doing. Hugs from one Patti to another- Patti B. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted March 17, 2009 Share Posted March 17, 2009 Patti I am so sorry to read this update but have to agree with Ned and Patti.. it is only in the chest and that's a plus. Sending lots of postive thoughts and prayers your way and hoping the radiation and chemo will do its job! Keep posting and lean on us. We are here for you!! Christine Quote Link to comment Share on other sites More sharing options...
carolhg Posted March 17, 2009 Share Posted March 17, 2009 You asked about an alternative doctor a while back. Please google: Dr. Raymond Chang, Meridian Medical in New York Ciity Meridian Medical Group: Chang Raymond MDwww.meridianmedical.org 102 E 30th St New York, NY 10016 (212) 683-1221 Hope this helps. Carol Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 17, 2009 Share Posted March 17, 2009 Hi Patti. I am sorry to hear of the latest developments after doing so well for so long. Of course you are angry. But as others have said it is confined to the lung so that is a good thing. Lots of prayers and positive thoughts that the radiation and the chemo do their job and you can get on with your life. Take care and please keep us posted on how you are doing. Sandra Quote Link to comment Share on other sites More sharing options...
jstdzy Posted March 17, 2009 Share Posted March 17, 2009 Hi Patty, If you weren't scared and angry something would be wrong with you! One thing all your posts say about you is that you're a fighter. So take awhile and scream and cry then dust yourself off and start swinging! Prayers are on the way! Dana Quote Link to comment Share on other sites More sharing options...
pattimarzano Posted March 20, 2009 Author Share Posted March 20, 2009 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? Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted March 20, 2009 Share Posted March 20, 2009 Patti There is ALWAYS someone here to listen and offer you support and hugs! My only thought on the esophageal reflux would be "magic mouthwash" which is a prescription your Dr can give you. It's a simple mixture of lidocaine, benadryl and maaloxx that coats the throat etc and numbs the pain. We had this for my step dad and it DID help.... Sending hugs and prayers to you Christine Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 20, 2009 Share Posted March 20, 2009 Hi Patti- Now this is going to sound stupid but ------ my sister has some medical problems and has been having some trouble swallowing. The doctor told her - and she thought at first, WOW this guy doesn't know what he is talking about, its going to make it worse - to bend her head down towards her chest when she is having trouble swallowing. I agree that it sounds like that would just make it harder to get the food down, but she says it works for her!! Just an idea - let me know if it works for you!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Kelly Posted March 20, 2009 Share Posted March 20, 2009 Did your radiation oncologist have you take liquid Sulcrate Plus a few days before you started radiation, four times daily during the whole radiation session and for a few weeks after? I had two cancerous lymph nodes wrapped around my windpipe and the tumor in the lung was near there also, so they expected trouble with the esophogus. I still had some trouble, feeling a "lump" when swallowing and was basically on a liquid diet by the end, but could eat soupy things like porridge with milk, yogurt, ice cream, smoothies, etc. I found it took a few months after radiation for the whole digestive area to return to normal. And I still avoid spicy foods, tomatoes, etc. and heavy foods. Any any foods that caused gas (at one point everything seemed to) because it seemed to get stuck in my stomach and I found it hard to burp it up and it was painful. Eventually, after trying every antacid-type over-the-counter remedy, I found that drinking a glass of warm water with a half teaspoon of baking soda produced the big burps I needed! It worked for me, but definitely check with your doctor before trying this! I also found I needed to sleep with three big pillows to keep my upper body high. I often thought of sleeping upright in the Lazy-boy chair, but never did. Anyway, it takes time to heal, but heal it does and ask your doctor for help and advice to see you through this. Quote Link to comment Share on other sites More sharing options...
Alisa Posted April 1, 2009 Share Posted April 1, 2009 Hi Patti! I too see Dr. Raymond Chang and he is unbelievably smart about botanicals/nutruceuticals and lung cancer. Carol H gave you all his information above. He does phone consults (pricey and not covered, but his in person visits can be submitted to your ins. co. if you have out of network coverage). He is worth every penny. By the way, more and more states are passing the medicial marijuana law. There's a lot of studies on THC and shrinking tumors, but unfortunately the average marijuana has too many carcinigens so people need to be very careful. Private Message me anytime you care to talk .... Quote Link to comment Share on other sites More sharing options...
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