I was diagnosed on August 18, 2008 with adenocarcinoma with bac features when a biopsy and wedge resection were performed at Moffitt Cancer center. All they said was some live for years and others don't do so well. Their plans were to remove left upper lung but ct scan showed nodules on rl also and they were afraid if there were more they would just have to keep taking more lung. They could not get to the right side to biopsy as my heart was in the way so do not know if any were cancerous or not.
Had 3 taxol, carboplatin treatments, then pet scan. Pet scan showed no uptake. If there was more cancer it did not show up on pet before chemo and post surgery....I get deathly sick with the treatments and have had 4 now. The medicines do not help. They had told me at Moffitt, maybe all i would need was 4 treatments. I am wanting so bad to not have any more of them as I am now sick up to 2 weeks from each one that I have every 3 weeks. Had to go to er this week as doctor was afraid I had a pulmonary embolism. (didn't, thank goodness). Anyhow last pet does not show any uptake and the previous one before chemo stated highly unlikely that anything they saw on that pet was malignant but more like inflammation. Any advice will help as I am VERY seriously considering stopping. 75 years young and afraid this chemo is really damaging me a lot. What do you think?
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rare cancer of lung
- By mitziger
- Posted January 4, 2009 at 12:04 pm · 17 replies
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Taxotere Pulmonary embolism Exercise Cancer Taxol Prednisone Carboplatin Lung cancer Folic acid Anemia
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- By Ramona
- Posted January 4, 2009 at 12:17 pm
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My advice would be to support your body with serious nutrition and supplementation. That is what I do and I think it has helped me a lot. The easiest and least expensive is th keep well hydrated at all times with water. Wet fruits such as watermelon straight or blended with ice and wet vegatables such as cucumber help too.
"Natural Stratagies For Cancer Patients" by Russell L. Blaylock, M.D., and retired neurosugeon.
The book is about $16 at some health food stores and assorted web sites.
For me this was very empowering.
Nutritionist from Cancer Centers of America 60 minute audio specific to lc. http://www.gildasclubtx.org/resources/mp3/BeckyWright_Lung.mp3
LDA
ramonarunkel@verixon.net
I know Moffit is concidered good but you might still want to get a second opinion at a major comprehensive cancer center when you have the energy.
ramonarunkel@verizon.net
- By mitziger
- Posted January 4, 2009 at 12:58 pm
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Thank you so much Ramona, I do not drink enough, I do know that and I can tell it by my dry skin. Do you think though I can get by without taking the last 2 treatments that were originally scheduled at the beginning? I really don't want them but don't know if it will affect me long term. Afraid not to and scared to death to continue the way they make me feel. I am really puzzled about doing what is best. Thank you for your advice. God Bless
- By LTLCS
- Posted January 4, 2009 at 1:39 pm
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Dear mitziger,
None of us can tell you what the best option or the best out come will be if you do or don't do your chemo. Truth is, we are ALL different anyway in this journey. No two are the same.
As for the kind of cancer you have, there really are many people dx.d with Adneocarcinoma with BAC features. I have had many over the years come and go through my LC In Person Support Group with the exact same thing. As for one lung cancer being worse then another, in my opinion, none of them are good ones or easy one. Treatments work for some, and the same treatments don't work for some. No one can make rhyme or reason out of lung cancer or it's treatments.
It's totally up to you if you want to continue your treatments. Talk it over with your doctor or maybe you would rather talk to your clergy. They also have Cancer Social Workers in Hospitals or Cancer Clinic's that can be very helpful with these types of choices.
Chemo is Poision and it is a very powerful drug. It's working to kill the cancer cells. It has to be powerful.
It also kills your good cells as well, but in time they will come back. And yes, you HAVE to drink a lot of water or juices or Boost/Ensure. It's very important to do that.
I think you might want to talk to your doctor, or Social Worker and or your family as to how you should continue with your treatments. This isn't an easy choice, but it is YOUR CHOICE.
Warm Regards and Best Wishes,
Connie
- By mitziger
- Posted January 4, 2009 at 1:53 pm
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Thank you for your reply, I guess I am wanting someone to tell me it is ok to discontinue. lol and I know they can't.....When I talked to the oncologists she acted like she agreed with moffitt that 4 did it since there was no uptake. When I went for my what I was hoping was the last one, I told nurse it was my last and she said doctor had not written that in my file and they usually finish up with what they decided on at first. Pulmonary doctor said we did it when he saw pet scans so I don't know and my primary doctor said you got very lucky. I just don't want to put more of that in my body than I have to. Thanks again for your in put and I will find out this week what I must do on the 7th, tell you what though if she says I can take the chance I will. Surgeon said it was rare and then said well a lot more people are getting it now and people that have never smoked and more women than men.
- By LoriD
- Posted January 4, 2009 at 10:11 pm
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That is a very difficult decision to make. My mother is also very ill for about two weeks after chemo. When we met with her Onc. she suggested that if after this round, (because she had already had it ), she experienced the severe side effects for two weeks again, they could reduce her next dose by 25%. Maybe that would be an option for you if you wanted to continue.
- By mitziger
- Posted January 4, 2009 at 10:36 pm
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Lori, you did get to go visit your mother? Sounds like it when you said you both went to see oncologist. I am sorry she too is having so much trouble. No easy way for us I guess, they did change mine from taxol and carboplatin to taxotere and carbo because of the neuropathy...I had to have shots for my rbc after the last treatment and this time my rbc is almost to that stage where I need it. Might be down there by the time I go in Wednesday. I think it is very hard on older people with it making your bones brittle and all. Have been prone to anemia anyhow and this just makes it so much worse. I wish there was something easier for people like us. My daughter and family were here over Christmas and much of the time I had to come in and close the door and go to bed, I was so nauseated. My daughter cooked most of Christmas dinner. Doctor said beings I had it on the 17th I should be over it by Christmas, didn't work that way. Is your mother taking the neulasta shot 24 hours later and did they give her the emend to take for 3 days to help with the nausea? I had all of that but didn't help. Wish I could think of some suggestion for your mother, maybe someone else can since I have not had good luck with the chemo either. Some people just breeze through it, don't get sick at all. I wish your mother the best Lori and hope they find something to help her. I have all kind of scripts but none seem to help. God Bless you both and she is lucky to have a caring daughter, I know you are worried but things will work out. Arletta
- By Ramona
- Posted January 4, 2009 at 10:58 pm
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Put your water allotment in a pitcher in the morning so that you know you have drunk enough by the end of the day. You will feel better for being hydrated. Drink! Drink! DrinK! It will flush the garbage a & chemo out of your system. Protein three times daily is important to heal. Go is mild exercise daily such as walks. Florida is gorgeous this time of year. I took the anti-nausea meds as needed.I was most sick starting day four. Eat as well and as often as you can. Organic chicken broth is protein too. Decaf green tea worked well for me. Lots of Vegetables and a little fruit. Nuts & seeds. Whether you continue with chemo or not you should take the best care of your body possible to feel better.
- By mitziger
- Posted January 4, 2009 at 11:11 pm
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That is a good idea Ramona, on the water allotment. I do take green tea extract, Vitamin D3, Selenium, vitamin c, folic acid. The green tea extract, selenium, vitamin D3 and vitamin C were all told to me by someone who went to cancer centers of america and has been NED for 6 yrs. She said 2000mg of green tea ex, and vitamin D3 and 200 selenium, oncologists did not want me to take 2000 mg of vit C so only take 500. But wil increase it if I am done with chemo. I remember now my neighbor who had cancer used to sit with a quart jar of water beside her all the time. Thank you for your ideas, all info is appreciated. I hope you are doing well Ramona and God bless.
- By Ramona
- Posted January 4, 2009 at 11:36 pm
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I am glad you are taking some supplements and those are good ones. I do take a lot more. My suggestion is to start learning about them for yourself I strongly recommend the book I suggested above by Blaylock. I take a lot of C and I never stopped. My suggestion is do your own research such as Blaylock and make your own informed decision after weighing the evidence yourself.
- By linnea
- Posted January 5, 2009 at 9:01 am
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Just a word of encouragement--I was dx April 2005 with BAC and although there has been progression since dx and I have required several modalities of treatment--I'm still kicking! Concentrate on the young part in your post--show that cancer what you're made of.
- By mitziger
- Posted January 5, 2009 at 1:12 pm
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Did you also have adenocarcinoma linnea with bac features or just bac? They say they are different if it adenocarcinoma with bac features. Boy don't feel young now. lol It really has taken a lot out of me, now this morning may have shingles in my left eye. The doctors' office saw me but want me to go to eye doctor which I get in this afternoon. So much for the golden years lol. Lucky to be here though, a lot aren't at 75. Thanks for your advice Arletta
- By mitziger
- Posted January 5, 2009 at 4:44 pm
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Thank you Connie for your insight into my problems. I just hope what ever I decide will be the right decision, I have to do it Wednesday. Two more doesn't sound that bad until I think of my side effects and boy hate to do that twice more. I will try drinking the ensure, always did like it so it won't be something I have to force down. Thank you so much and good luck with what you are facing too. I hope you are doing well. Arletta
- By mitziger
- Posted January 5, 2009 at 4:49 pm
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I will look into getting the book, I too take other things but those are the new ones I started taking. Oncology nurse told me not to take all of that vitamin C and I do see where some think it protects the cancer as well as the good cells and then again some people take that instead of chemo by way of iv. Maybe one of these days they will find a really easy way to get rid of the beast, until then we will just have to do the best we can. Thanks again for your ideas Arletta
- By carolyntoo
- Posted January 5, 2009 at 5:26 pm
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Whatever you decide, it IS the right decision, at least for today. Don't worry with coulda shoulda wouldas. I have adeno with BAC also. And I agree about the water. I sure feel it when I don't drink enough. Take care.
- By mitziger
- Posted January 5, 2009 at 5:39 pm
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carolyntoo,
When were you diagnosed? Have you had it for awhile and did you have more than one tumor? Mine was small. 1.2cm and clean margins they said when they removed the one on the left that was malignant. I hope you are in remission and doing well. Would like to hear from you again about you. Arletta
- By Ramona
- Posted January 6, 2009 at 8:07 am
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What the nurse said to you about C is why I said to do your own research so that you can make an educated decision yourself. Modern American cancer oncology is mostly anti-oxident. After some hesitation, I have chosen a different path.
I acquired shingles on my back in the middle of chemo supported radiation. Chemo was postponed for one week. Radiation was stopped for three days. I got a 15 day course of anti-viral drugs from my dermatologist. Shingles truly sucked. I felt worse when that happened. Maybe that is influencing how you feel lately as it starts a week or two before more easily dx symtoms appear. It took me a long time to recover from it. I think acupunture helped me.
- By mitziger
- Posted January 6, 2009 at 11:40 am
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Ramona, I went to doctor, they were not sure and thought my eye should be checked out with my eye doctor, luckily I was able to see him yesterday at his other office. He said no it is not shingles in my eye, a little inflammation but not shingles. I am not sure about the one on the outside as it is drying up now with prednisone. I have had them before back in the late 80's and my hubby had them after his diagnosis of lung cancer. Must say mine have never been a bad case, Had them around one eye before and slight case half way around the back of chest. They are not fun and hurt like the devil. I will be ok now and yes it does take a long time to get over. My hubby was very sick with it. Thanks for your interest. Arletta
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