New to discussion board

Kimlawrence

hello everyone, my name is Kim, im four months from last treatment for lung cancer. I had a non small cell tumor in my left lobe. I did chemo and radiation then a preventative round of brain radiation because they say lung cancer likes to crawl into the brain. As of two weeks ago my first scans were completely clean. I'm dealing though with a tremendous amount of residual side effects Though, I've lost over forty pounds and am down to 84 pounds and that's four months after treatment. in addition to the chronic nausea I have really bad neuropathy in my right hand and in addition to the pain it causes it also causes a lot of numbness so I drop things all the time because I think I've got them and I really don't. SO, hoping to share and learn from anyone whose been there, done that about the post side effects. It would really help to have someone who "gets it" share with me. Thanks

dennycee

So sorry to read that you are

So sorry to read that you are having so many problems.  First I'd like to verify one thing.  Do you have small cell or non small cell?  I ask because preventative radiation to the brain is not beneficial in non small cell and does nothing for the patient.  In small cell it does prevent the brain mets for many (not 100%).  

there are two appetite stimulants that may help you.  They are Marinol and Megace.  If you live in a state that has medical marijuana you might look into it.  A member of my cancer support group has had great success with it when the other two didn't work for her.  You should consult someone who knows more than I if you go that route.  I think that you want a tincture of something higher in THC than cannabinoids, but I haven't used it so I'm not exactly sure. 

Gabapentin and Lyrica are two meds your dr can try to help relieve some of the neuropathy.  Look into adding a palliative care MD to you team as they have additional training in dealing with the long term side effects of cancer and other chronic diseases. 

I am a 5 year survivor of non small cell adenocarcinoma. My friends husband survived 7+ years with small cell limited before dying of other causes earlier this month. There is always hope. 

Kimlawrence

dennycee said:

So sorry to read that you are

So sorry to read that you are having so many problems.  First I'd like to verify one thing.  Do you have small cell or non small cell?  I ask because preventative radiation to the brain is not beneficial in non small cell and does nothing for the patient.  In small cell it does prevent the brain mets for many (not 100%).  

there are two appetite stimulants that may help you.  They are Marinol and Megace.  If you live in a state that has medical marijuana you might look into it.  A member of my cancer support group has had great success with it when the other two didn't work for her.  You should consult someone who knows more than I if you go that route.  I think that you want a tincture of something higher in THC than cannabinoids, but I haven't used it so I'm not exactly sure. 

Gabapentin and Lyrica are two meds your dr can try to help relieve some of the neuropathy.  Look into adding a palliative care MD to you team as they have additional training in dealing with the long term side effects of cancer and other chronic diseases. 

I am a 5 year survivor of non small cell adenocarcinoma. My friends husband survived 7+ years with small cell limited before dying of other causes earlier this month. There is always hope. 

Dennnycee,

 

i apologize for taking so long to respond. Being new to the site I didn't realize someone could comment on what another said. I thought it was just a way to sort of introduce yourself. I had/have non small cell lung cancer. I've been out our treatment three months, had my first scan two weeks ago, it was clean. So I got lucky this time. 

I appreciate the suggestions for the nausea meds, pain from the radiation burn to my esophagus and the constant feeling Of I detesting are my primary issues right now and I did ask my dr. about a  nausea drug that turned out to have cannibus in it and though here in Ma., medical marijuana is legal she said none of the insurance companies would pay if I were to go that route. But as a new dr., I've met with her once now, this week she is suggesting a new nausa med for me to try which I will pick up on way home from another appointment today. Also I see her in two weeks and even though she kindly talked with me for an hour there were a few things we didnt get a chance to touch on, one major one being the nueroparhy so I will bring your suggestions to her in two weeks and see if she's willing and agreeable to letting me try one or the other or both. 

 

Tell ll me a little about yourself, my side effects post treatment have been really tough (to me) even compared to all the vomiting during actual  treatment, it's these after effects that are really wearing me down. Have no idea if I mentioned it because I can't see what I wrote but since treatment I lost thirty pounds, since treatment ended I've lost additional ten. So I've gone from approximately 120 to 83 pounds.  Did you go thru a lot of weight loss, did you experience radiation burn, what if yes worked best for you for healing.

On  the positive side it was discovered that I have thrush again so once cleared up that might help me 1. Eat more because it won't hurt as much, and 2. Start being able to taste more, I've just started noticing this week that I can taste certain things again which has been fun because now I'm starting to really want food, like a little food monster every few hours I'm hungry again (brand new experience) since the beginning of treatment, for the longest time I had no desire to eat I believe because of the esophageal pain I got when eating and my inability to taste anything,  but now I find myself wanting food, so if we clear up the thrush maybe that med will also help with the last of the esophagus burns I developed during lung radiation.  I did have brain radiation and I did have non small cell so it makes me confused when you say that it's not considered necessary for non small cell because they made it sound like it would greatly increase my chances of the cancer not spreading to my brain, but.....  Whats done is done. I will ask though I see them tomorrow (Thursday) for my first follow up to radiation dr. since my scan two weeks ago, and as I mentioned three months post treatment.

 

im going to try and get back to sleep, it's 340 am Thursday, my email is kiml1955@yahoo.com, if you send me an email letting me know that you've been able to write back I will know to come look here now for you

I hope you know how much I appreciate that you took the time to reach out to me  it was a gift finding your message as I said I had no idea people responded to each other on this particular site  I'm just learning the difference between the chat room, the discussion board and today I was told by someone about the expressions gallery.  But I like that this site allows you a chance to "talk" with one person, I enjoy the chat room but they go really fast and if there's three or four people on it I still find it confusing trying to read what people are saying, respond to things said specifically to me by someone and others responses to conversations that are separate from what I might have asked about.  So this was a treat finding you

 

have a good thursday

sincerely,

kim lawrence

mass.

 

dennycee

Kimlawrence said:

Dennnycee,

 

i apologize for taking so long to respond. Being new to the site I didn't realize someone could comment on what another said. I thought it was just a way to sort of introduce yourself. I had/have non small cell lung cancer. I've been out our treatment three months, had my first scan two weeks ago, it was clean. So I got lucky this time. 

I appreciate the suggestions for the nausea meds, pain from the radiation burn to my esophagus and the constant feeling Of I detesting are my primary issues right now and I did ask my dr. about a  nausea drug that turned out to have cannibus in it and though here in Ma., medical marijuana is legal she said none of the insurance companies would pay if I were to go that route. But as a new dr., I've met with her once now, this week she is suggesting a new nausa med for me to try which I will pick up on way home from another appointment today. Also I see her in two weeks and even though she kindly talked with me for an hour there were a few things we didnt get a chance to touch on, one major one being the nueroparhy so I will bring your suggestions to her in two weeks and see if she's willing and agreeable to letting me try one or the other or both. 

 

Tell ll me a little about yourself, my side effects post treatment have been really tough (to me) even compared to all the vomiting during actual  treatment, it's these after effects that are really wearing me down. Have no idea if I mentioned it because I can't see what I wrote but since treatment I lost thirty pounds, since treatment ended I've lost additional ten. So I've gone from approximately 120 to 83 pounds.  Did you go thru a lot of weight loss, did you experience radiation burn, what if yes worked best for you for healing.

On  the positive side it was discovered that I have thrush again so once cleared up that might help me 1. Eat more because it won't hurt as much, and 2. Start being able to taste more, I've just started noticing this week that I can taste certain things again which has been fun because now I'm starting to really want food, like a little food monster every few hours I'm hungry again (brand new experience) since the beginning of treatment, for the longest time I had no desire to eat I believe because of the esophageal pain I got when eating and my inability to taste anything,  but now I find myself wanting food, so if we clear up the thrush maybe that med will also help with the last of the esophagus burns I developed during lung radiation.  I did have brain radiation and I did have non small cell so it makes me confused when you say that it's not considered necessary for non small cell because they made it sound like it would greatly increase my chances of the cancer not spreading to my brain, but.....  Whats done is done. I will ask though I see them tomorrow (Thursday) for my first follow up to radiation dr. since my scan two weeks ago, and as I mentioned three months post treatment.

 

im going to try and get back to sleep, it's 340 am Thursday, my email is kiml1955@yahoo.com, if you send me an email letting me know that you've been able to write back I will know to come look here now for you

I hope you know how much I appreciate that you took the time to reach out to me  it was a gift finding your message as I said I had no idea people responded to each other on this particular site  I'm just learning the difference between the chat room, the discussion board and today I was told by someone about the expressions gallery.  But I like that this site allows you a chance to "talk" with one person, I enjoy the chat room but they go really fast and if there's three or four people on it I still find it confusing trying to read what people are saying, respond to things said specifically to me by someone and others responses to conversations that are separate from what I might have asked about.  So this was a treat finding you

 

have a good thursday

sincerely,

kim lawrence

mass.

 

Hi Kim!  
Do talk to your doc

Hi Kim!  

Do talk to your doc about an Rx for either the Megace or Marinol if you need a stimulant insurance will pay for.  Honey is a natural source of anti oxidants.  It has been used for healing burns for 1000s of years.  Know that the darker the honey the greater the content of anti oxidants. If you use honey pick one that has been homogenized as raw honey contains botulins and you are immuno suppressed right now. Some people say using it during radiation helps prevent some of the burn buti did not find out about that till long after my radiation was finished.  Hooray on getting tastebuds and appetite back.  It sounds as though you are still on steroids from radiation.  They made me ravenous.  My cousin and I had ice cream therapy every night.  

As for me, my stage 4 adenocarcinoma was diagnosed in Oct. 2010 so I am a five year 3 month survivor.  I've not had any maintenance treatment. Apparently I am a super responder.  When I was diagnosed I was told I might live 10-15 months with treatment.  There have been long term side effects.  I had osteopenia which became osteoporosis after chemo, radiation and the steroids.  I've also had 10 fractures on 6 of my ribs, 2 of which will never heal.  I had 4 compression fractures of vertebrae T6-9, three of which they could repair with kyphoplasty.  Please have a bone density test at your earliest opportunity. 

Exercise has helped me tremendously.  In a couple months when irritation from radiation is done, insist on a new pulmonary function test to establish a new baseline.   Request pulmonary rehab. Also find out if your local YMCA has a Livestrong program.  Are you being treated at Mass General?  Some of the worlds best thoracic oncologists practice there. There are soany new treatments that have been approved for lung cancer and promising ones in development.  Its an exciting time to be a patient, doctor or advocate.  

Juli A

dennycee said:

Hi Kim!  
Do talk to your doc

Hi Kim!  

Do talk to your doc about an Rx for either the Megace or Marinol if you need a stimulant insurance will pay for.  Honey is a natural source of anti oxidants.  It has been used for healing burns for 1000s of years.  Know that the darker the honey the greater the content of anti oxidants. If you use honey pick one that has been homogenized as raw honey contains botulins and you are immuno suppressed right now. Some people say using it during radiation helps prevent some of the burn buti did not find out about that till long after my radiation was finished.  Hooray on getting tastebuds and appetite back.  It sounds as though you are still on steroids from radiation.  They made me ravenous.  My cousin and I had ice cream therapy every night.  

As for me, my stage 4 adenocarcinoma was diagnosed in Oct. 2010 so I am a five year 3 month survivor.  I've not had any maintenance treatment. Apparently I am a super responder.  When I was diagnosed I was told I might live 10-15 months with treatment.  There have been long term side effects.  I had osteopenia which became osteoporosis after chemo, radiation and the steroids.  I've also had 10 fractures on 6 of my ribs, 2 of which will never heal.  I had 4 compression fractures of vertebrae T6-9, three of which they could repair with kyphoplasty.  Please have a bone density test at your earliest opportunity. 

Exercise has helped me tremendously.  In a couple months when irritation from radiation is done, insist on a new pulmonary function test to establish a new baseline.   Request pulmonary rehab. Also find out if your local YMCA has a Livestrong program.  Are you being treated at Mass General?  Some of the worlds best thoracic oncologists practice there. There are soany new treatments that have been approved for lung cancer and promising ones in development.  Its an exciting time to be a patient, doctor or advocate.  

Lung Cancer

Hi gang,

 

I am currently in remission from stage 3 lung cancer.  I am suffering terribly from crippling depression.  I have lost my appetite, my desire to do anyting, etc.  It seemed like around 3 months after I was told I was in remission, my life took a dive for the worst.  I can't concentrate, difficulty sleeping, just a general I don't care anymore attitude.  My work has been great, everyone around me is so supportive.  I have been seeing a phychiatrist for help and everything she has given me has made things worse.  Is it possible that a person's system just gets completely toxified so what normal medicines are supposed to do just do not work on people with toxified systems?  I don't feel like myself anymore.  I can't engage in what used to be so important to me.  Everyone says I should be happy I am alive, but I don't feel alive anymore.  I feel like a big pertender everyday, going through the motions, and looking forward to getting home, being by myself and sleeping.  I know it is major depression, but traditional methods don't seem to be helping.  I tried a councelor and he told me to take a walk and see a movie.  I lived a very busy fulfulling life before my diagnosis.  I feel like damaged goods now, I see the dark side of everything.  I cry everyday.  I don't know what to do at this point to stop this downward spiral.  I have even reached out to my oncologist to discuss the possibility of getting on disability.  I am not seeing a positive future.  This is in direct opposition to the war I just waged a few months ago fighting this cancer to live.  Is this PTSD?  Will this get any better?  Did chemo and radiation destroy my phyche?  Has this hapened t anyone else?

PolishPrince

Juli A said:

Lung Cancer

Hi gang,

 

I am currently in remission from stage 3 lung cancer.  I am suffering terribly from crippling depression.  I have lost my appetite, my desire to do anyting, etc.  It seemed like around 3 months after I was told I was in remission, my life took a dive for the worst.  I can't concentrate, difficulty sleeping, just a general I don't care anymore attitude.  My work has been great, everyone around me is so supportive.  I have been seeing a phychiatrist for help and everything she has given me has made things worse.  Is it possible that a person's system just gets completely toxified so what normal medicines are supposed to do just do not work on people with toxified systems?  I don't feel like myself anymore.  I can't engage in what used to be so important to me.  Everyone says I should be happy I am alive, but I don't feel alive anymore.  I feel like a big pertender everyday, going through the motions, and looking forward to getting home, being by myself and sleeping.  I know it is major depression, but traditional methods don't seem to be helping.  I tried a councelor and he told me to take a walk and see a movie.  I lived a very busy fulfulling life before my diagnosis.  I feel like damaged goods now, I see the dark side of everything.  I cry everyday.  I don't know what to do at this point to stop this downward spiral.  I have even reached out to my oncologist to discuss the possibility of getting on disability.  I am not seeing a positive future.  This is in direct opposition to the war I just waged a few months ago fighting this cancer to live.  Is this PTSD?  Will this get any better?  Did chemo and radiation destroy my phyche?  Has this hapened t anyone else?

Congratulations on being in

Congratulations on being in remission!! It's a strange word, many people confuse it's actual definition. You are very well spoken and articulate, and speak fondly of work and supportivness of everyone, how is your home support system? Mortality, it's a strange thought that no one else in the world knows except those that have come too close. Your entire outlook somehow changes, the urgency fades, things just don't appear exciting anymore. How deep are the colors you see now, dont they seem deeper? Slow down and just observe, you'll be amazed at what you see. Talk less about things and listen more, you'll hear more than the words that are spoken. Look deep into someones eyes, not to see but to feel what the other person feels. Are you using alll your senses or just going through the motions of life? You ARE NOT or will never be damaged goods! You are Juli, seeing the dark side is easy, figuring out how to get back out into the light is harder for some, but more fulfilling as you knew previously.  Do you still think your "war" is really over. It's actually called LIFE and it's meant to be LIVED forever! Smilin is contagious, smile often.

Physical toxicity can be removed by several methods, look into a foot toxicity bath in your area. Diet and excercise help also.

**Our minds are our greatest assets and our worst enimies! 

**Random, anonynomus acts of kindness causes smiles! 

I'm a spiritual, God fearing man. I find solace in the bible to try to help me understand why bad things happen to good people. It gives me inspiration and comfort from the fear that haunts me. You are not damaged and certainly not alone! We're all going to die someday, just not today! God Bless You and may you find the peace and grace he offers.