Ladies going through chemo - how are you doing? Or those just starting or curious
Hi ladies! I know Teddi Bear, Editgirl and I are in active treatment. I thought it would be good to check in, see how you all are doing, share ideas, information etc.
i am in a clinical trial consisting of Aldoxorubicin and Gemzar infusion on day 1, gemzar on day 8, neulasta shot on day 9 and start all over again on Day 22 (reset to day 1.). I have been pretty beat for about four days post treatment and rebound in time for the next one. In my case I am having issues with platelet counts, hemoglobin to on my off weeks I am getting transfusions to boost my marrow production. They are seeing some of this with other trial participants and able to manage it. My doctors also noted that given I have been in continuous treatment now since April 2013 it also makes sense that my bone marrow production needs some "help".
I have few days where I wake up feeling energetic and well rested but when I do - watch out world! those are the days where I go for a gentle horseback ride, run errands, see friends for lunch.
How are you all? Sending hugs, keeping you in my prayers - Anne
Comments
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EatingCucu me said:Post 4th chemo,
Have 2 more from total of 6 Carbo/Taxol.
Diagnosed in April this year. Had surgery in May.
Endometrial Adenocarcinoma Stage 4, grade 3 or 2.
My first chemo was the worst so far, the second was better and my Onco doctor told me, that the rest will be fine,not worse.
Side efects start on the second evening after treatment. Bone pain between knees and ankles mostly for 3-4 days, so I'm taking Tylenol every 4-6 hours.
The nausea I manage somehow. I don't have apetite, so I don't eat much.
When my legs get better start headache, insomnia and restless legs syndrom. The headache gets worse with each treatment.
After the 3th chemo the carrot juice helped me, but not after the 4th,
so I'm taking strong pill for the headache.
For week or 10 days after chemo I'm exremely tired. Some days I stay in bed, but most of the time I'm trying to be active.
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
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Hi Cindi!TeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
Your food changes are very similar to mine. I started this journey, and continue it - as a very healthy person except for the cancer of course! Decent diet but I also enjoyed my sweets - my weight was fine, not thin but okay. On frontline chemo the thought of something sweet was nauseating. I am still the same way now except for the occasional ice cream which seems to help with my constipation. My taste has evolved to savory things and I crave apples, arugula and eat a lot of chicken. Plus baked potatoes are the most constant.
Sleep is an issue for me. i used to really stress over it. One of the things that I have heard consistently is sleep when you can, don't push yourself during the daytime but take naps if you are tired. A few of my doctors recommended taking a benedryl for sleep at night which I would do if I needed to, then they prescribed a light dose of Attivan which I take only as needed. I also have a cup of chamomile, mint and ginger tea before I go to bed which really helps.
Some nights I get up, take my tea and sit outside looking at the stars and enjoying the quiet stillness. I think about my space in this world and find it to be very peaceful for me. My dogs usually accompany me. Those are moments I find to be special and worthwhile.
sending hugs.
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I have sleeplessness for a decade or moreTeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
Recently I try The breathing 4-7-8( find it in internet),reading, walking, eating or if anything Lorazepam.
Food taste: mine changed too. In my bad days I'm craving salty junk food and in my normal days - everything, but less sweet than ever.
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4-7-8Cucu me said:I have sleeplessness for a decade or more
Recently I try The breathing 4-7-8( find it in internet),reading, walking, eating or if anything Lorazepam.
Food taste: mine changed too. In my bad days I'm craving salty junk food and in my normal days - everything, but less sweet than ever.
I tried that also, but it made me anxious and I couldn't sleep at all! But, my daughter says it works for her. I do find reading before bed helps. Sandy
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SleepingTeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
I am that rare bird who seldom has trouble falling asleep. So far, the chemo has made only a little difference. I am still able to sleep at least 5 or 6 hours straight and sometimes a little more. A friend told me about 4-7-8 and I have tried it. I find it relaxing, but I'm not sure it makes any difference. On nights when I do have trouble falling asleep, I use a variation of counting sheep where I concentrate only on counting slowly and visualizing only the numbers (no sheep!). Sounds weird, I know, but it usually works for me.
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I forgot to mentionEditgrl said:Sleeping
I am that rare bird who seldom has trouble falling asleep. So far, the chemo has made only a little difference. I am still able to sleep at least 5 or 6 hours straight and sometimes a little more. A friend told me about 4-7-8 and I have tried it. I find it relaxing, but I'm not sure it makes any difference. On nights when I do have trouble falling asleep, I use a variation of counting sheep where I concentrate only on counting slowly and visualizing only the numbers (no sheep!). Sounds weird, I know, but it usually works for me.
some relaxing tea from the grocery store before going to bed. Worked for me before.
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Sleep InputCucu me said:I forgot to mention
some relaxing tea from the grocery store before going to bed. Worked for me before.
Thanks all for the feedback. Lots of great suggestions to try.
Just got back from my 6 week post hysto surgery check up. All looks good. Physical restrictions lifted. Yippee!
Now, if all goes like last week... I may have just enough time to vaccum before the fatigue sets in tomorrow afternoon. :-)
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weekly chemo #3 ImpactsTeddyandBears_Mom said:Sleep Input
Thanks all for the feedback. Lots of great suggestions to try.
Just got back from my 6 week post hysto surgery check up. All looks good. Physical restrictions lifted. Yippee!
Now, if all goes like last week... I may have just enough time to vaccum before the fatigue sets in tomorrow afternoon. :-)
This time was not as bad as # 2. I'm on my worst day today (if all goes like the first two).
Lower energy hit around 11 on day 2 post chemo day. And, I had some stomach cramps but not nearly as severe as last week.
Heavier fatigue hit today (day 3), still some stomach cramps but nothing major, some nausea (took a pill), some minor aches and a low grade headache. Mostly sleeping or laying on the couch. I don't have a lot of energy to do much else. No appetite today. But eating a little and drinking lots of fluids.
This cycle was easier to live with for sure.
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I hopeTeddyandBears_Mom said:weekly chemo #3 Impacts
This time was not as bad as # 2. I'm on my worst day today (if all goes like the first two).
Lower energy hit around 11 on day 2 post chemo day. And, I had some stomach cramps but not nearly as severe as last week.
Heavier fatigue hit today (day 3), still some stomach cramps but nothing major, some nausea (took a pill), some minor aches and a low grade headache. Mostly sleeping or laying on the couch. I don't have a lot of energy to do much else. No appetite today. But eating a little and drinking lots of fluids.
This cycle was easier to live with for sure.
the rest you have won't get worse.
Talking from experience and from what my oncologist and naturopatist told me.
Thumps up!
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Hair Loss ProcessCucu me said:I hope
the rest you have won't get worse.
Talking from experience and from what my oncologist and naturopatist told me.
Thumps up!
So, I'm finding it easier to say I will be bald than actually taking action to make it happen.
I have fine, thin, straight hair. And, the fallout started about 4 days ago at a fairly rapid rate. I don't have bald spots yet but I'm not far from that point. And, dealing with the falling hair is on my last nerve. I have been pulling it back to contain it as much as possible. But, my scalp is bothered by the tension. Did any of you get something similar to "sore spots" ? Not really painful, just sensitive.
I took a giant step today by pulling it into a ponytail and whacking it off. Decided I would be the one to make it ugly before the chemo does it. Next step will be to have my husband shave it. I'm still working on myself for that step!
Here's a question: How long after any of you started losing your hair did you have to shave it?
I hope you are all having a nice holiday weekend.
Cindi
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Bald is beautiful!TeddyandBears_Mom said:Hair Loss Process
So, I'm finding it easier to say I will be bald than actually taking action to make it happen.
I have fine, thin, straight hair. And, the fallout started about 4 days ago at a fairly rapid rate. I don't have bald spots yet but I'm not far from that point. And, dealing with the falling hair is on my last nerve. I have been pulling it back to contain it as much as possible. But, my scalp is bothered by the tension. Did any of you get something similar to "sore spots" ? Not really painful, just sensitive.
I took a giant step today by pulling it into a ponytail and whacking it off. Decided I would be the one to make it ugly before the chemo does it. Next step will be to have my husband shave it. I'm still working on myself for that step!
Here's a question: How long after any of you started losing your hair did you have to shave it?
I hope you are all having a nice holiday weekend.
Cindi
I had pain in my scalp, especially on my pillow at night. I was told this is the follicles effectively dying in your scalp. originally my hair came out very gently, no clumps. About a week later it started in clumps and I shaved it pretty quickly right after. This time around it was again coming out just leaving a fine layer on my pillow and in my hands. I had the scalp pain again. My stylist cut it into a pixie about two weeks ago and while I am losing some no clumps and no patches. When that starts I will shave it all off again Although there is a chance that my hair will stay thinner like it is. I had very thick, wavy hair before I started my chemo journey, it started to grow back in about a month after I finished frontline and came in extra thi k and very curly. I didn't lose any during Doxil nor Avastin. The great thing is losing your body hair! I haven't shaved my underamrs in two weeks and about the same for my legs. The tough part for me was losing my eyebrows and eyelashes which is happening this time around.
Sending hugs! Anne
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HairAWK said:Bald is beautiful!
I had pain in my scalp, especially on my pillow at night. I was told this is the follicles effectively dying in your scalp. originally my hair came out very gently, no clumps. About a week later it started in clumps and I shaved it pretty quickly right after. This time around it was again coming out just leaving a fine layer on my pillow and in my hands. I had the scalp pain again. My stylist cut it into a pixie about two weeks ago and while I am losing some no clumps and no patches. When that starts I will shave it all off again Although there is a chance that my hair will stay thinner like it is. I had very thick, wavy hair before I started my chemo journey, it started to grow back in about a month after I finished frontline and came in extra thi k and very curly. I didn't lose any during Doxil nor Avastin. The great thing is losing your body hair! I haven't shaved my underamrs in two weeks and about the same for my legs. The tough part for me was losing my eyebrows and eyelashes which is happening this time around.
Sending hugs! Anne
I never shaved mine. The women who fitted me for a wig told me not to but I've forgotten why. Luckily my scalp wasn't sensitive. My hair was short so I just combed it several times a day and that kept things from getting messy- kinda like grooming your dog when it's shedding. Like AWK I minded losing my lashes and brows the most. my wig looked better than my own hair. Oddly enough, I found very short hair is flattering to me and I still wear it that way. Without chemo I would never have know. There's a silver lining to everything.
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thanks!ConnieSW said:Hair
I never shaved mine. The women who fitted me for a wig told me not to but I've forgotten why. Luckily my scalp wasn't sensitive. My hair was short so I just combed it several times a day and that kept things from getting messy- kinda like grooming your dog when it's shedding. Like AWK I minded losing my lashes and brows the most. my wig looked better than my own hair. Oddly enough, I found very short hair is flattering to me and I still wear it that way. Without chemo I would never have know. There's a silver lining to everything.
Thanks Anne and Connie for the replies.
I gave myself the gift of lazor hair removal years ago. So, I just have a few stragglers here and there on my legs and underarms. :-)
Now, if it would get rid of the darn chin hairs, GREAT!
I still have my eyebrows. But, my eyelashes are getting thin. It is an adventure finding them to put mascara on. I agree, I think losing the eyebrows and lashes will be harder. Makeup will be a must!
I put one of my head wraps on this evening to keep my hair from falling into my food while cooking dinner. Plus, it gave me a chance to think about the after hair look. Just another milestone to get me closer to the end of this chemo journey. Not sure about a wig, Connie. Living in Florida with the humidity may be a bit much. Especially adding hot flashes into the mix. I have this visual of being in a store, having a hot flash and ripping it off my head! lol
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WigTeddyandBears_Mom said:thanks!
Thanks Anne and Connie for the replies.
I gave myself the gift of lazor hair removal years ago. So, I just have a few stragglers here and there on my legs and underarms. :-)
Now, if it would get rid of the darn chin hairs, GREAT!
I still have my eyebrows. But, my eyelashes are getting thin. It is an adventure finding them to put mascara on. I agree, I think losing the eyebrows and lashes will be harder. Makeup will be a must!
I put one of my head wraps on this evening to keep my hair from falling into my food while cooking dinner. Plus, it gave me a chance to think about the after hair look. Just another milestone to get me closer to the end of this chemo journey. Not sure about a wig, Connie. Living in Florida with the humidity may be a bit much. Especially adding hot flashes into the mix. I have this visual of being in a store, having a hot flash and ripping it off my head! lol
Yep, don't think I could manage that in Florida during the summer. I managed to hang onto my eyebrows till till the 4 th chemo. Never fear, the chin hairs will go....then return. I tried lazer for them but they always return. Darn stubborn.
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hair lossConnieSW said:Wig
Yep, don't think I could manage that in Florida during the summer. I managed to hang onto my eyebrows till till the 4 th chemo. Never fear, the chin hairs will go....then return. I tried lazer for them but they always return. Darn stubborn.
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
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hair lossmary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
Hi Mary. I started having scalp pain right before my 2nd chemo (just finished #4 last week). I had already cut my waist length hair super short. When the pain started, my husband buzzed my hair and the pain went away.
I have not worked since my surgery in April. My doc says many people do work during chemo, but my chemo hang-overs have been so rough I don't understand how. I do understand the financial need to work. My medical bills (despite insurance) are pilling up. In a month or so, I hope to return to working at a job I retired from 2 years ago to get those bills paid.
I understand having lots of questions. When I would ask my doc these types of questions, all I ever got was "well usually......". Not much help when you are in a black hole in need of a life line. The folks here have been a great help and comfort for me. Lots of good info and resources.
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Marymary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
Hi Mary, Sorry you have to join this cancer journey with us. But, you have come to the right place for support and answers.
I am the only one that I know of that is on weekly treatments rather than the every 3 week timeline. Still on the fence which way is better. At this point I'm leaning towards the every 3 weeks because it seems like there is a longer "better days" window between treatments.
My hair started falling out at day 16 post my first treatment. Tomorrow will be day 21 and is my next treatment. I will be taking that next step today to go bald.
I have a port. I did have post surgery pain that took about 2 or so weeks to resolve. However, after watching other patients without a port getting stuck many times to find a good vein, I know I made the right decision to get one. It was placed in the hospital under anesthesia.
You can do this Mary. Not going to lie, it isn't easy but it is doable. Lots of ladies on this site continued to work during treatment. I was lucky to have retired January of this year. So, I can't give you first hand experience on working during treatment.
Ask any questions. Someone will have the experience to answer you.
Cindi
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Hi Mary - there are a couple of things you should check intomary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
I took a short term disability leave during frontline (first type) chemo, returned to work and worked through 19 months of other treatments which took place every three weeks. if your company has an HR deptment you should speak with them. You can take FMLA leave which will protect your job while you are out for up twelve weeks. My company provides full pay for that same period through a combination of short term disability from the state and company offset. All of my benefits remain intact. The other thing that I was urged to do was register as a Disabled individual under the ADA act. This benefits both you and your company if it is of a certain size. In my case I was allowed to work from home after treatments which was a huge help. Confidentiality is attached to this although I ended up telling people I was still going through treatment. I work with a team and my team needed to understand how to reach me etc. it worked out well.
The most important thing is to be gentle with yourself. You can do this no matter what. Hugs - Anne
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Hi, Marymary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it. I was out. I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well. The procedure was easy. There was some pain after but I didn't even need to take ibuprofen for it. I did have to use my hand and arm on a limited basis for a few days, though. It does make the chemo much easier. I did not want to risk the damage to soft tissue that Taxol can sometimes cause.
As far as working, everyone has a different tolerance for the chemo and the side effects. I have only had one treatment, and my side effects have been minimal so far. However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.
If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun. I am so glad that I did it that way. We had a blast trying on different styles and colors. But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo. I'm guessing mine will start to go this weekend. Probably won't wear the wig all the time, but I am glad that I have that option.
Ask away with the questions. Someone here will be able to help. The journey is a lot less scary with these ladies.
Chris
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myexperienceEditgrl said:Hi, Mary
I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it. I was out. I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well. The procedure was easy. There was some pain after but I didn't even need to take ibuprofen for it. I did have to use my hand and arm on a limited basis for a few days, though. It does make the chemo much easier. I did not want to risk the damage to soft tissue that Taxol can sometimes cause.
As far as working, everyone has a different tolerance for the chemo and the side effects. I have only had one treatment, and my side effects have been minimal so far. However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.
If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun. I am so glad that I did it that way. We had a blast trying on different styles and colors. But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo. I'm guessing mine will start to go this weekend. Probably won't wear the wig all the time, but I am glad that I have that option.
Ask away with the questions. Someone here will be able to help. The journey is a lot less scary with these ladies.
Chris
Mary,
I lost my hair, but not compeletely right before my second chemo. After that I had falling again, but still not the whole.
I don't have port, my doctor even did not ask me for it.I'm stage 4.
I stopped working right after I was diagnosed. I got Cobra insurance. I want to work,but it depends of my condition after the chemo is over.
Agry, this place is great for us to ask and share.
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