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Man, when does the "WANT" come back...

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Some of you guys are familiar with my story, but just a brief, Squamous Cell Carcinoma, base of tongue, 36 years old, 3 chemo, 35 radiation.
My last radiation was Dec. 17th, 2009. My nausea is finally subsiding, my saliva is still pretty much non existent, it comes and goes, nights are worst, Ive trained my self to sleep with my mouth closed. My taste buds have come back to about I would guestimate around 25 percent, maybe a little more. My main concern now is my want. I dont want for anything. I dont want food, not because it tastes bad, because a lot of things taste good, I could sustain myself on food, but I just dont WANT to eat. I could go all day and not eat anything and wouldnt think twice about it. I wont even get into the not wanting to listen to my favorite song. I literally dont have any wants, not just food, its like Im void mentally of yearnings for anything. Is this normal? Would you guys say that some of this is related to depression? Maybe not the food want, but the other stuff. I just miss not wanting. I dont feel like my self.
I have started back to work part time. I really dont work hard when Im at work, but man all I want to do is come home and sleep. Sleep is my main thing right now. I sleep so much. I have to get out of this habit of sleeping, or I will never be worth a crap at work. They are being really awesome and working with me, and maybe Im just expecting too much too fast of my self physically. Your brain always is ready before your body.
Any advice anyone? Thanks guys.

GRAVEY

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Gravey,
I still haven't started my chemo and rads yet but i don't have time to work. Seems one doctor appt. leads to another and another and so on. It really bothers me not working, and I could get real used to just sitting around. So what I do so far is to get my butt up and out and sometimes force myself to just do something. I asked my doctor about it and he said he would give me medicine but man I'm takin enough crap already. But if it gets to where I feel I need medication I WILL get some. So I guess it's up to you kinda of a mindset that maybe you can work yourself through. Lean on someone if you can, do whatever it takes but hang in there it'll come back I know it will. My thoughts are with ya man.

BLESSINGS ON YA,
STEVE

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Thanks Steve. I am taking Zoloft 50mg once daily, I just started a couple of days ago. They say it takes a couple of weeks to take affect. I'll let you know in a couple of weeks if I feel any different. Blessings to you to man.

GRAVEY

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I was pretty much where you are when I was at your stage. Now, 16 months out, I still could go a whole day without eating -- but the difference is, now I want to eat. I think it took me about three or four months for my appetite to come back, but it's still not quite like it used to be.
As for not wanting anything else, I can't say I've had that problem. Aside from my wife, the love of my life is hunting. When I was only a month out of treatment and still really miserable, my friends in my hunt club took me out duck hunting, and it's something I really wanted to do. A few weeks later I hunted every day of our 8-day deer season, because it's what I really wanted to do. That helped me get back into a normal frame of mind.
But life after cancer is a new normal, and things change. Aside from the mental and emotional changes that treatment puts you through, it's awfully hard on your body. Give yourself some time for your body to heal. That's why you want to sleep so much -- your body's telling you that it needs rest.
Hang in there. If your experience is anything like mine, you'll get better. It can take awhile, and life will be different. But for me, at least, life is better now: I appreciate it that much more.

--Jim, up to his a*s in snowbound Delaware

Hondo's picture
Hondo
Posts: 5631
Joined: Apr 2009

You have just been through hell; it will take time for your body to fully heal from the affects of the radiation and chemo. Start off a little at a time and build your way back up, it may take several months for your body to get running again. As for food, your brain just needs to be reprogrammed, it too will start to kick in and you will get hungry again, it took me quite a while after treatment stopped. Just remember that you have a new normal and your body will adjust to it.

Take care my friend

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

What you describe DOES sound like depression, and your doctor apparently thinks the same thing, based on the Zoloft prescription.

It is not abnormal or anything to be ashamed of. Many people seem to experience depression and/or the sense of lethargy and apathy that you describe. When it happens it is not usually a long-lasting thing, especially when you take a pro-active approach as it seems you have done.

I would suggest that while a medication is helpful you can also improve your 'want', your perspective and your appetites for food and for life, by talking to someone on a regular basis, whether this person is a trained therapist or a trusted religious person, and, at the very least, by exercising routinely. If your idea of exercise is to go fishing, then go fish.

You did not endure your treatment so that you could sleep away the rest of your life, I am confident.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Please, do not feel like the long stranger when it comes to "wants." I believe that people do only what they want to do. I had base of tongue cancer Stage IV. I did my chemo and radiation treatments because I wanted to fight the cancer in my body. When I finished the treatments I wanted to be better. But I wasn't. I know of the lethargy of which you speak. I spent two years wondering why I did not "want" to do anything. It was depression for me. Talking to friends helps some. Talking to doctors does help but I am reticent to speak up. Much to my demise I suspect. I have found that treating my thyroid has given me some relief of the wants or lack thereof. I also have started with Effexor and am pleasantly surprised. Non of the other anti-depressants that I have taken did anything but make it easier to do nothing and not care about the "wants." Like I did not care. So far I feel like I am beginning to care again. I really want to care again.

The best thing I did to get on my road to recovery from the depression that entered after the treatments was to visit this site and read of others that had same or similar incidents and stories. Some members have horror stories to tell and they still have an upbeat attitude. in my case, a success story, but still hanging out lost and lethargic. Everything has worked out well for me yet I still felt that missing item of which you spoke. Keep trying!! I started on this site screaming for help and got it. Now I am pleading with you to remain in the fight for you will get through this lethargy when you want to. Please do not continue beating yourself up mentally. I gotta tell ya... I tried to kick my own butt for two years but I found that my legs were to short.... so I gave it up. It has been better for me since I did.

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

You've got a little depression going on. I was upstairs brushing my teeth today about midmorning after a little light exercise since I'm currently a bit depressed too. I started to use my waterpik and realized I had not eaten any breakfast at all. I just forgot to eat. Chemo brain can do this too. You are still recent post treatment with very little taste and saliva. It will get better. You will also need to plan more for things you can eat, soups, salads, grains etc. Have more of that stuff on hand. Stock your favorites. I always have some cottage cheese on hand.

My own experience has been that it takes a lot less food now to feel full. I have lost about 40lbs and seem to be maintaining that weight. I am also not hungry all the time. Eating is no longer the joy it used to be. It is now a lot of work so perhaps I don't prioritize it as I used to. Give yourself more time.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I do a 2 mg Lorazepam ( ativan) before bed i also use marijuana in a vaporizer to stimulate hunger .. i am in a medical marijuana state... and i pour down super healthy shakes made from stuff at gnc .. i am 1.5 years out and feeling great

Hondo's picture
Hondo
Posts: 5631
Joined: Apr 2009

I thought I did mj everyway possible in life but you just showed me I was wrong. It has been over 30 years but one thing I do remember was always being hungry when using it.

Maybe it should be legal for people with medical problems like cancer

Take care

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

I have been using MJ also to stimulate my hunger, unfortunately I dont live in a legal state, so I have to get mine the old fashioned way. If everyone experienced a little cancer, MJ WOULD be legal everywhere, when I was going through my chemo treatments, it was an absolute Godsend literally, it was the only thing that literally took away all my chemo negative side affects, and allowed me to eat food normally after my treatments for that rough week and a half afterwards, got rid of all my nausea, I actually wanted food. It was amazingly affective.
And some may feel that, oh its illegal, you shouldnt be doing it its hurting you, its bad for your health, but when you consider how much radiation and chemo are poisoning you, smoking some MJ isnt really that bad. Esp, for the medicinal benefits it provides. I need to get a vaporizer though, I could be ingesting it in a healthier fashion. I have a friend that provided me with some baked in chocolate treats, its hard to control your ingestion amount that way though, so I dont use that for the medicinal benefits though.

GRAVEY

Hondo's picture
Hondo
Posts: 5631
Joined: Apr 2009

Humor is very good medicine and I am glad to see you using it as it helps to heal. I very strongly agree with you mj is no different then any other medication, the good it can do outweighs any bad and with far lesser side affects then most of the drugs we are giving.

Take can and all the best with your treatment.

backachedp
Posts: 124
Joined: Oct 2009

My husband Bob has Cancer..but I am on Med MJ..I dropped 70 lbs in a very short period of time. I have chronic pain. I have had several Surgeries. I get Merinol..it is Marijauna in a pill form. It has helped me increase my eating and make me want to eat..Bob has not tried it...maybe he will after he starts to try eating again. He finished Radiation & Chemo on Jan 28th. The week following his last Radiation he slept the entire week & felt worse then he ever had. He had a Dr aapt on the following Thursday & just could not go. We went to the Dr this past Wednesday & she said after what he had just been thru no wonder..his body needed to rest. He was told yesterday he will have an operation on his Tognue in the future for Scar Tissue...left side in the back. He was told he can start to eat on WQednesday, but the Mucus is still a big problem, so he is a bit hesitant to start yet...she sugested Applesauce,Yougert,jello...we will see when he feels comfortable he will try. I think he is afraid to choke. I tell him what people on here have tried and to keep water nearby when eating and gravy on things so they slide down better..I thank you all again for all you have done to help us thru this tough time...we do see an end to this road we have been on since Sept 29..Good luck to all:)

Hondo's picture
Hondo
Posts: 5631
Joined: Apr 2009

I went through the choking stage every time I ate but managed to clear myself each time, the more my body got use to eating again the lesser I had coking problems.

I heard of some people using mj as a tea, so it can get into the blood stream faster. All I can say if it is working for you and helping you to gain your weight back that is good news.

Take care and keep posting on how you and Bob are doing

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

backachedp, I completely understand your husband's fear of choking, it happens to me quite oftern. If I don't choke the food gets stuck in my throat and I sometimes have to put the handle of my toothbrush down my throat to dislodge it. One thing I've found that helps is putting water in my mouth before I swallow. The water helps the food to go down much easier. I wish you and your husband the very best and I will keep you in my prayers. Good luck.
God Bless,
Debbie

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Hi Gravey,
I cant offer too much advice since I havent had anything done yet, have SCC in a lump in the back of my neck, and have had PET scan yesterday. But like you I dont want to do anything either. Have to force myself to eat. Have to force myself to go out and get things done. I hope you start to feel better soon. This site is great, I am glad I joined.
Mary

JGE
Posts: 50
Joined: Mar 2009

Seems odd to smoke Marijuana to treat a "smoker's" disease. How does anyone who smokes marijuana know whether it was the marijuana smoking that caused the Squamous?

How is a vaporizer different? Does it protect your mouth, throat and lungs from the carcinogens in the smoke?

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

JGE your right, it very well could have caused the squamous, but then again, it may not have, no one will ever know, although, my docs were aware that I did, and thier opinion, because the size of the cancer cells,(My ENT told me the exact medical terminology of the large cells but I couldnt tell you what he said, it was one of those 1,000,000$ words they get payed big bucks to know) that my cancer was NOT from my history of smoking, see apparently the size of the cancer cells indicate to doctors certain traits of the cancer itself. Again, Im just repeating what my docs opinions were. They very well could be wrong
All I know is, there are people who live completely healthy lives, and still get cancer, there are countless numbers of examples of individuals on this board that can attest to that story.
And again, if you consider the damage that chemotherapy and radiation are doing to your body, when you feel as bad as you feel under the influence of those poisons, smoking a little pot to give you a little euphoria for a little while, as well as stimulating your appetite, and getting rid of the nausea feeling you have CONSTANTLY, are more than worth the downsides to smoking it a few times. But again, this is just an opinion, and Im no doctor :)

GRAVEY

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Twelve year ago I underwent treatment and there was no "medical marijuana". I was undergoing both chemo and radiation at the same time and as all of you know - I was vomiting, weak, did not want to eat and felt like crap all the time. Also I was a single parent with two teenaged sons (not in school thank goodnes, both were working) and no caregiver. The Doctor prescribed anti-nauseau medication (pills) which, even with two medical insurance plans, cost me $35 each. The problem was I would take the pills and immediately throw them up in the toilet with no positive results. One morning I flushed $105 trying to keep down one pill and finally quit. That day before getting zapped the rad technician told me I might want to try smoking some pot first and to then take the pill. I truly believe this advice saved my life because I could not have gone on living the way things were. I will also say that it only took one or two puffs and that was all I needed ease the nauseau and to allow the pill to stay down. I never got high (I wish I could have) and it did nothing at all to help my appetite, maybe I didn't smoke enough.
Now I need to clarify something. My mother is currently undergoing chemo and living at my house and the treatments available today are a 1000% better than when I was sick. I don't know if I would do it the same way with the meds available but who knows.

I am retired military and probably one of the most conservative people around but I will say that for real medical uses this should be allowed. By the way I lived in Alabama :>)

If you are undergoing treatment you do whatever you need to survive and make life easier and to have a little bit of comfort.

It is easier to apologize than to get permission.

fsdman
Posts: 51
Joined: Jul 2009

I am in a med marijuana state and it was the best med for nausea after I got my PEG.Each time I "fed" myself I got sick and nauseous. The MJ calmed my stomach in seconds.It also helped my sleeping and appetite. Oh-it was also a nice escape from the reality of treatments .I had a hard time after only 1 week of rads.Not to be legal is an insane politically motivated intrusion into our lives. No one in history ever overdosed on pot-never. I doubt another drug could make that claim.

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

Greend, I just want to thank you for the service you provided this country!!! I cannot thank you or any Military person enough for what you gave up for America!! So, THANK YOU VERY MUCH!
I also want to say I'm sorry to hear about your mom. You will both be in my prayers along with everyone else here.
God Bless,
Debbie

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Hate to break it to you but 12 years later I still do not have the total "want". You just do what you have to do with a rationale mind. I know I must eat so I do it and so on. However it isn't all bad and you do get used to it and the craving "want" does go away. I just joined this group and to be honest, until I read your post I had forgotten how things used to be. Things I once craved (steak, shrimp, salad etc) I no longer even think about but buddy I'll drool over a moist dessert or mashed potatoes and gravy. Next year it will all change again.

I love it bacause it drives my wife crazy trying to figure out what I can and can't/won't eat :>)

I forced myself to get back into work. In fact the biggest mistake I made was on the Monday following my last radiation treatment the previous Friday I insisted my boss allow me to make a trip to Germany that I had put off before I started treatment, I wanted my world to be normal again. I did not realize the effects of radiation last a long time after the treatment. I also didn't know my ear canal had been scared shut by the radiation and as a result I had terrible ear aches due to pressure in the plane (tubes in the ears fixed that), I got to Germany and could only eat moist bread and I look like #$%# with my burned neck and back (couln't even enjor a German beer). And I slept the whole time other than the two meetings I had to attend. Give youself time.

Hang in there because some things are now beyond your control so just enjoy the ride you have left. I have been blessed these past 12 years withy many things.

Hondo's picture
Hondo
Posts: 5631
Joined: Apr 2009

I have the same problem with the wife always asking me what I feel like eating, and I always use the same line, “I don’t know dear”. Really to tell you the truth I don’t know, if something is put before me I will eat it.

I enjoyed reading your story it kind of reminded me of how fast we all want to get back to our Normal self, we just need to take time and get uses to the new normal

Take care and keep posting

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Thanks for being so candid Greend. Fatigue has haunted me these last three years. It is finally getting better through thyroid treatment. Going back to work after your treatments must have been horrific!! I went to a dance with my wife for a few hours after treatment. It was horrible. My wife could see me slowly sinking away and took me home. It was a long time before we tried anything like that again.

I am in awe of anyone who works during and after treatment. As a heavy equipment operator who is required to work long and dusty hours on the job I would never have been able to do my job. To this day I am not able to concentrate on the tasks at hand so finish work on a blade or a dozer is not going to happen. I still feel guilty about not working. I think I hate my midwest upbringing. Ya...that's it!! I will blame my parents. LOL!!

OF late food has started to become enjoyable. I have been experiencing strange cravings for ground white pepper on just about everything that is hot when served. I can say that this is part of the new normal I am beginning to like. So this is a monumental moment in my recovery. Could it be the start of acceptance? Thanks Greend for helping to bring that out in me!!

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

Gravey, it is my experience that what you're going thru is depression. I always take meds for it but it got worse after my rad treatments. I didn't desire anything either except to be left alone. My last treatment was 10/22/09 and I am just now getting back to wanting. I want to eat everything b/c it has been so long. I want to get on the computer but usually just to come to the CSN. Other than that, I guess I still need help b/c that is all I do all day. I don't even visit friends and when they ask if I am up to company, I say no. I hope the want for me comes back as well b/c if it doesn't, then I've lost a major battle. I honestly feel that the cancer has changed my personality. I used to love being with people but any more that just seems overwhelming. I pray that you, me and any others feeling like we do will be blessed with a "want" real soon.
God Bless,
Debbie

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I don't know if was radiation, chemo or what, I gained a exrtra 20 lbs before treatment started, after everything started i lost the taste, lost the energy as well, 3rd, 4th week i become violently sick and couldn't eat for 2 weeks. I lost 40lbs, depressed, could care less, you are not a lone, i hate this with a passion, i had a few support people, but the doctors worried more about my weight, and wanting to plug me with a tube, i refused. your drained, tired, and want to live in bed, i worked full time, boss was great at first. now she wants to know when i will get my voice back? I wish they could have this once, to feel the hurt and anguish we all go threw. It does get better, I'm eating better, but my body and mind have totally changed it's lifestyle. I am so thankful there are people like yourself and everyone where we can ask questions and voice are opinions, I'm sorry, when it boils down to it, if you haven't been threw this yourself, you will never know the frustration and pain. Hang in there guy, I know where your coming from.Take Care. Dennis

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Glad you found your way in here. Seems those of us that needed this place have found our way in here somehow. I see many paralells in your post, and I know your frustration. Good to take strength in the numbers here. Seeing that somehow they have been able to get thru to the other side. Hoping I can get there too. At least now I am feeling like it might be possible for me to get there someday.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Gosh it has been rather cathartic for me since joining the forum. I felt so agitated when I first found the forum. In my head I was on my last legs. I also need to point out that it was needless to be stressed out but I was. It is so true that no one knows how you feel unless you have had the problem. Reading these forums has made a difference. I am trying and don't feel alone.

Sweetblood you keep writing things that hit me dead center. I have the same feeling of possibilities and know that I am not alone. IT seems like I am commenting on your responses on the forum a lot lately. Like I tell my wife when she has cooked a great meal, "That was some good cooking." She has over the years started saying, "Oh, you always say that." Which I reply to her, "Yes, you are right. I always do say that and the reason is...it is always good. Don't discount me since you are the one doing the cooking."(or in your case...posting...lol!)

Thanks Sweetblood and all the members of this forum that post!! I am so happy to feel the possibilities!!!!

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Well lets see

1) I went through pure hell treating a very scary disease and wondering if I would live or die
2) I had to wear a stupid mask and listen to that damned x-ray machine killing me
3) They put poison in my blood stream and told me it wa "good for me"
4) I puked my guts up in the toilet
5) I can't "hock a lugie" (spit for you folks up north)
6) Can't eat like I used to and food tastes different.
7) My beard fell out all at once one night and all I had was the hair in the middle of my chin. It looked like I had a turkey beard.

and the list goes on

Here I am 13 years later -

I look back and now consider all my military days of going out and getting drunk and then "worshiping the restroom goddess" as on-the-job-training for cancer and the related nauseau. I never missed the bowl thanks to years of intensive training :>).

Dry mouth no longer keeps me awake at night and my hands are permanently cupped to hold a water bottle.

I know that anything that happens to me physically can't be any worse than what I have experienced so I am a stronger man for it. I will say that e-coli came close but that was very short term.

Mask - what mask? I don't have no stupid mask :>)

I no longer worry about cancer returning, I can't control that and there is nothing I can do about it, so now I concern myself with things I can control/influence.

FAMILY

I now know I am not afraid to die. When the doctors were trying to determine if I should have "just one more treatment" I made the decision - I said the answer is "no" and if I die so be it - that's how beat down I was a that time. This really provides me with an inner peace and helps me put "the small stuff" in perspective and just ignore it in most cases. (who really cares if Aunt Ruth is having an affair with the mailman other than Uncle Buck).

I have been blessed these past 13 years - remarried, grandchildren, supporting my mother as she goes through chemo, bought a neat truck (ok stretching it a bit here) and have met a great bunch of like minded people on this addictive board who are going through the same things I did yet seem stronger than I was at the time.

Maybe I should not be so depressed. CW (and the rest)- you will do fine. By the way CW, you know you could ask your wife if she could at least share some of her cooking with the rest of us.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Ya, I hear you Greend. You had your mililtary training for the bowl. I always likened mine to selling Buuuuicccks. LOL! I learned not to miss the bowl as well.

Hey as far as sharing is concerned it would be no problem but I have to warn you that I have two sons at home and eating at my table is like a pirranha food frenzy. So even as it is good it may sometimes be hazardous to ones health, LOL!!

blackroze1000's picture
blackroze1000
Posts: 50
Joined: Jan 2010

You said that so well. I had finally for the most part gotten over my feelings of depression after surviving my head/neck cancer when recently, bam, breast cancer. Crap. But, as you said, going through cancer before has made me a stronger person today, and so I am confident I will beat this new cancer as well. I hope 13 years from now I will look back and be right where you are mentally. You're very blessed in so many ways and I'm glad you see that and can share it with others. Good for you!!

Elaine in Georgia

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

but it was more like an even exchange. since a lot of what you said hit home for me.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

just wanted to say that i hope you are starting to feel a little better. its a long road coming back, but you are not alone. we can all identify.

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Thanks sweet, I am feeling a little better, Im now at my 17th day back to work, the first two weeks I did part time until about 1:00,then I would go straight home and crash out until the next morning. Now Im on my second week of full time, and I can make it until 5:00, but then I go straight home and crash until around 10:00, I'll get up get something to eat, and then go back to bed. Oh, I also take a shot of Hydrocodone liquid that my radiologist perscribed me. Im really achy when I get home from work and it does wonders to help me relax, both after work and to go to sleep at night.
Im still smoking MJ to help with my nausea and help me want to eat, and it has really done the trick. I have actually pretty much halted drinking the ensure plus's, and pretty much just eat regular food now. I have about 25 to 30 percent of my tastebuds back, and between that and the MJ, I have gained about 5lbs.
Im stoked for that, and look forward to a clean test so I can get this F'ing tube out of my stomach and port out of my shoulder.
So really my only complaints are the non-saliva issue and the fatigue.

Hopefully this note finds you well as well :)

GRAVEY

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Glad to hear you are doing a little better. :)

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

It felt like graduation day when they took mine out, just no Pomp and Circumstance music.

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