Desperately need feedback for Post Cancer issues
Has anyone out there had any of these issues?
We do stay hopeful and have strong faith, because faith is what moves the hand of God. God's blessings to all of you - Cancer patients, Cancer survivors and the Caregivers.
Thanks in advance!!!!
Comments
-
Yes, many people here have
Yes, many people here have had many or all of those issues.
I have had the blood pressure issues, but that seems to have resolved itself after I gained my weight back. If anything, it seems to be higher than it used to be. Probably inactivity and my diet.
I have been dilated a total of three times, twice stretched since cancer, I am a little better, but I cannot swallow pills at all, and I cannot swallow much in the way of meats. I still have issues when I eat, but I have learned how to prep foods by chopping them smaller, and by cooking them in ways that are softer and easier to swallow. Still, it takes me at least an hour to eat a meal, something challenging can take an hour and a half to two hours.
I have about zero saliva, but no mucus problems anymore. Just dry as dust. I have a dry tickle constantly and hack and gag constantly. I think biotène is one of my new food groups. I also use Act Total Care for dry mouth.
My tongue hurts constantly. It feels scalded. Sometimes when it's bad I use a numbing solution like magic swizzle, lidocane, or oragel. Sometimes throughout the day I will get even more pain in my tongue, very sharp pains. I basically just live with it. It's hard to talk because my mouth is so dry. It's a struggle to eat because of my tongue.
My left hand tingles and is numb kind of. I just live with that too. My neck is always painful, and I often have spasms and pain from the neck dissection. I pretty much just live with that too. I am not working though.0 -
side effectssweetblood22 said:Yes, many people here have
Yes, many people here have had many or all of those issues.
I have had the blood pressure issues, but that seems to have resolved itself after I gained my weight back. If anything, it seems to be higher than it used to be. Probably inactivity and my diet.
I have been dilated a total of three times, twice stretched since cancer, I am a little better, but I cannot swallow pills at all, and I cannot swallow much in the way of meats. I still have issues when I eat, but I have learned how to prep foods by chopping them smaller, and by cooking them in ways that are softer and easier to swallow. Still, it takes me at least an hour to eat a meal, something challenging can take an hour and a half to two hours.
I have about zero saliva, but no mucus problems anymore. Just dry as dust. I have a dry tickle constantly and hack and gag constantly. I think biotène is one of my new food groups. I also use Act Total Care for dry mouth.
My tongue hurts constantly. It feels scalded. Sometimes when it's bad I use a numbing solution like magic swizzle, lidocane, or oragel. Sometimes throughout the day I will get even more pain in my tongue, very sharp pains. I basically just live with it. It's hard to talk because my mouth is so dry. It's a struggle to eat because of my tongue.
My left hand tingles and is numb kind of. I just live with that too. My neck is always painful, and I often have spasms and pain from the neck dissection. I pretty much just live with that too. I am not working though.
When were you originally treated. You have so much strength. I am praying for you. Ann0 -
CrazymomCrazymom said:side effects
When were you originally treated. You have so much strength. I am praying for you. Ann
Hi, I think you are asking me, since you replied to my post? If so, thank you for the prayer. I had my neck dissection in January of 2009, then radiation from 4/6/09 to 5/15/09.0 -
Side effects continue post cancersweetblood22 said:Yes, many people here have
Yes, many people here have had many or all of those issues.
I have had the blood pressure issues, but that seems to have resolved itself after I gained my weight back. If anything, it seems to be higher than it used to be. Probably inactivity and my diet.
I have been dilated a total of three times, twice stretched since cancer, I am a little better, but I cannot swallow pills at all, and I cannot swallow much in the way of meats. I still have issues when I eat, but I have learned how to prep foods by chopping them smaller, and by cooking them in ways that are softer and easier to swallow. Still, it takes me at least an hour to eat a meal, something challenging can take an hour and a half to two hours.
I have about zero saliva, but no mucus problems anymore. Just dry as dust. I have a dry tickle constantly and hack and gag constantly. I think biotène is one of my new food groups. I also use Act Total Care for dry mouth.
My tongue hurts constantly. It feels scalded. Sometimes when it's bad I use a numbing solution like magic swizzle, lidocane, or oragel. Sometimes throughout the day I will get even more pain in my tongue, very sharp pains. I basically just live with it. It's hard to talk because my mouth is so dry. It's a struggle to eat because of my tongue.
My left hand tingles and is numb kind of. I just live with that too. My neck is always painful, and I often have spasms and pain from the neck dissection. I pretty much just live with that too. I am not working though.
Thanks so much for your quick response "Sweetblood 22". I truly admire your strength from what you've endured from your cancer. Sorry. I have many quesions for you. What type of cancer did you have? How long did you have the bp issues? This has been going on with my husband Louis for over a year now, 4 years post cancer. Since July, he's been in and out of the hospital for either his bp spiking or dropping. Aside from in the hospital for pneumonias. He also just started losing his taste again. Did the dilation not last long the first or second times? Louis just had his done on 11/15 and he feels like his esophaegus has closed up already. If you're unable to take your meds how do you take them? Louis' mouth is like you said "dry as dust" and that along with the tongue spasms, it's difficult for him to take his meds too. He tries the swallowing techniques - chin to chest and no luck. From what I've read from many of the threads on this site, these side effects can pop up and stay around for years. He has seen a few neurologists for the numbness in his hands and the latest one will be doing carpal tunnel surgery after the first of the year. He was honest in saying it may only give him minimal functionality. But because the radiation damaged the nerves in his brachial plexus (above the left breast area), he ended up with a pinched nerve in the wrist and elbow. So, this dr. will start with the hand and work his way up. We are hopeful and as you know with everything you've been thru too you have to be. It will not always be like this. Things do get better.
I will pray for you to stay strong and for improvement and healing to come your way. I really like your positive attitude and sense of humor.
Have a restful evening!0 -
Louceillouceil said:Side effects continue post cancer
Thanks so much for your quick response "Sweetblood 22". I truly admire your strength from what you've endured from your cancer. Sorry. I have many quesions for you. What type of cancer did you have? How long did you have the bp issues? This has been going on with my husband Louis for over a year now, 4 years post cancer. Since July, he's been in and out of the hospital for either his bp spiking or dropping. Aside from in the hospital for pneumonias. He also just started losing his taste again. Did the dilation not last long the first or second times? Louis just had his done on 11/15 and he feels like his esophaegus has closed up already. If you're unable to take your meds how do you take them? Louis' mouth is like you said "dry as dust" and that along with the tongue spasms, it's difficult for him to take his meds too. He tries the swallowing techniques - chin to chest and no luck. From what I've read from many of the threads on this site, these side effects can pop up and stay around for years. He has seen a few neurologists for the numbness in his hands and the latest one will be doing carpal tunnel surgery after the first of the year. He was honest in saying it may only give him minimal functionality. But because the radiation damaged the nerves in his brachial plexus (above the left breast area), he ended up with a pinched nerve in the wrist and elbow. So, this dr. will start with the hand and work his way up. We are hopeful and as you know with everything you've been thru too you have to be. It will not always be like this. Things do get better.
I will pray for you to stay strong and for improvement and healing to come your way. I really like your positive attitude and sense of humor.
Have a restful evening!
I had SCC Stage 4, unknown primary. When I had my neck dissection, they took out my left salivary gland, and 23 lymph nodes, 3 were positive. I had the BP issues from about June of '09 when I was down to 87 pounds, to about November of 2010.
After radiation when i was finally able to try and eat, (I went 9 months with no food by mouth) I couldn't get the food down. When they did the first stretch, he told my dad that he went from 2mm to 9mm. I could get yogurt down at that point, but I still couldn't get down food. Despite the fact that they about lost me during that stretching ordeal, I did it again, because I was miserable not being able to eat, and if I croaked during the stretching attempt, well, I was going to take the chance, because I wanted to eat. So, they dialted me a little more, and I can swallow some stuff now. The stricture is in the upper part of the esophagus, which I guess is difficult to,stretch. I should have another one, but I'm too scared to do it, because they don't go easily for me. (usually not a big deal for other people).
As for medication, I am not on any right now that need to be swallowed. If I need antibiotics, they mix them as liquid for me. I buy liquid ibuprofen for pain relief. Benadryl also comes in liquid.
Thanks you for your good thoughts. Best wishes to both of you.
Blessings,
Sweet0 -
Agreesweetblood22 said:Yes, many people here have
Yes, many people here have had many or all of those issues.
I have had the blood pressure issues, but that seems to have resolved itself after I gained my weight back. If anything, it seems to be higher than it used to be. Probably inactivity and my diet.
I have been dilated a total of three times, twice stretched since cancer, I am a little better, but I cannot swallow pills at all, and I cannot swallow much in the way of meats. I still have issues when I eat, but I have learned how to prep foods by chopping them smaller, and by cooking them in ways that are softer and easier to swallow. Still, it takes me at least an hour to eat a meal, something challenging can take an hour and a half to two hours.
I have about zero saliva, but no mucus problems anymore. Just dry as dust. I have a dry tickle constantly and hack and gag constantly. I think biotène is one of my new food groups. I also use Act Total Care for dry mouth.
My tongue hurts constantly. It feels scalded. Sometimes when it's bad I use a numbing solution like magic swizzle, lidocane, or oragel. Sometimes throughout the day I will get even more pain in my tongue, very sharp pains. I basically just live with it. It's hard to talk because my mouth is so dry. It's a struggle to eat because of my tongue.
My left hand tingles and is numb kind of. I just live with that too. My neck is always painful, and I often have spasms and pain from the neck dissection. I pretty much just live with that too. I am not working though.
Sweetblood wrote.... I think biotène is one of my new food groups
Sweet, your words sure made me chuckle this morning, it really isn't funny, but it hits home. I about spit my coffee out when I read those words, but they hold true to me also. Maybe I should buy some stock in Biotene....?
My Best to You and Everyone Here0 -
Glad I could give you the chuckle.
Seriously, if that stuff had calories in it, I'd be 200 pounds, easy.0 -
Biotenesweetblood22 said:Glad I could give you the chuckle.
Seriously, if that stuff had calories in it, I'd be 200 pounds, easy.
I find the biotene has no taste, but when I use the stoppers4 it taste like wintergreen to me.0 -
After treatment
I was treated in 1996 and about two years ago started have severe side effects. I went to numerous specialists until I found a Dr at the University of Alabama who was able to explain the mess to me, not to fix them but at least to explain. I started losing my voice first and went from raspy to barely legible. This is caused by the radiation paralyzing my left vocal cord; no remedy yet. I lost the use of my "swallow" muscles and I too was aspirating with results being pneumoinia. I had three bouts in four months plus serious weight loss. Dr told me I HAD to get a feeding tube because my weight loss would prevent them for being able to do the surgery if I lost more weight. I took the tube and it was the best decision I ever made.
I am totally numb in my chin area and the front quarter of my tongue (also if I stick out my tongue it points to the left). I have lost some feeling in my pinky finger on my right hand and the trigeminal nerve on my right jaw is also damaged causing neck and upper back pains and some serious neck spasams. Like Hondo I also get the ice pick pains in my right jaw which will drop me to my knees at times.
Now the good news. The tube should prevent the recuring pneumonia (I know hs doesn't want it, neither did I, but the quality of life improves). The tongue should stabalize soon. Mucus - we all have discussed this and there are numerous thread addressing it. Mucinex, peroxide and water mix, staem baths etc all will give some relief. For the pain they give me meds and muscle relaxers.
I was really down in the dumps when all of this seemed to happen overnight but I'm now getting used to my "new normal" and with my wife we are adjusting to the changes.
Good luck and he's not alone.
Denny0 -
Hi Louceil
I have the same problems with blood pressure one time it is too hi the next it is too low. My BP goes from 225/115 to as low as 55/40 before I faint. This is due to radiation damage to the Carotid Sinus in his neck. I will send you my contact info as I like to know what type of Cancer your husband.
Carotid
Sinus
God bless
Hondo0 -
Stoppers4osmotar said:Biotene
I find the biotene has no taste, but when I use the stoppers4 it taste like wintergreen to me.
Ok, well I guess that shoots any ideas about ever ordering the stoppers4. I was going to try it when I ran out of the bioténe. I cannot stand wintergreen, so that ain't gonna work. That flavor makes me gag. Ack.0 -
Tastessweetblood22 said:Stoppers4
Ok, well I guess that shoots any ideas about ever ordering the stoppers4. I was going to try it when I ran out of the bioténe. I cannot stand wintergreen, so that ain't gonna work. That flavor makes me gag. Ack.
Thats what it tastes like to me, with the fast fading tasting ability, I can't honestly tell you if it is really a wintergreen taste, just that it is to me.0 -
Hi DennyGreend said:After treatment
I was treated in 1996 and about two years ago started have severe side effects. I went to numerous specialists until I found a Dr at the University of Alabama who was able to explain the mess to me, not to fix them but at least to explain. I started losing my voice first and went from raspy to barely legible. This is caused by the radiation paralyzing my left vocal cord; no remedy yet. I lost the use of my "swallow" muscles and I too was aspirating with results being pneumoinia. I had three bouts in four months plus serious weight loss. Dr told me I HAD to get a feeding tube because my weight loss would prevent them for being able to do the surgery if I lost more weight. I took the tube and it was the best decision I ever made.
I am totally numb in my chin area and the front quarter of my tongue (also if I stick out my tongue it points to the left). I have lost some feeling in my pinky finger on my right hand and the trigeminal nerve on my right jaw is also damaged causing neck and upper back pains and some serious neck spasams. Like Hondo I also get the ice pick pains in my right jaw which will drop me to my knees at times.
Now the good news. The tube should prevent the recuring pneumonia (I know hs doesn't want it, neither did I, but the quality of life improves). The tongue should stabalize soon. Mucus - we all have discussed this and there are numerous thread addressing it. Mucinex, peroxide and water mix, staem baths etc all will give some relief. For the pain they give me meds and muscle relaxers.
I was really down in the dumps when all of this seemed to happen overnight but I'm now getting used to my "new normal" and with my wife we are adjusting to the changes.
Good luck and he's not alone.
Denny
On your PEG tube what type do you have, I understand there are a few types. A regular tubes and a button types also how often does it need to be changed or replaced?
Thanks
Hondo0 -
DennyGreend said:After treatment
I was treated in 1996 and about two years ago started have severe side effects. I went to numerous specialists until I found a Dr at the University of Alabama who was able to explain the mess to me, not to fix them but at least to explain. I started losing my voice first and went from raspy to barely legible. This is caused by the radiation paralyzing my left vocal cord; no remedy yet. I lost the use of my "swallow" muscles and I too was aspirating with results being pneumoinia. I had three bouts in four months plus serious weight loss. Dr told me I HAD to get a feeding tube because my weight loss would prevent them for being able to do the surgery if I lost more weight. I took the tube and it was the best decision I ever made.
I am totally numb in my chin area and the front quarter of my tongue (also if I stick out my tongue it points to the left). I have lost some feeling in my pinky finger on my right hand and the trigeminal nerve on my right jaw is also damaged causing neck and upper back pains and some serious neck spasams. Like Hondo I also get the ice pick pains in my right jaw which will drop me to my knees at times.
Now the good news. The tube should prevent the recuring pneumonia (I know hs doesn't want it, neither did I, but the quality of life improves). The tongue should stabalize soon. Mucus - we all have discussed this and there are numerous thread addressing it. Mucinex, peroxide and water mix, staem baths etc all will give some relief. For the pain they give me meds and muscle relaxers.
I was really down in the dumps when all of this seemed to happen overnight but I'm now getting used to my "new normal" and with my wife we are adjusting to the changes.
Good luck and he's not alone.
Denny
Man I feel for you. Did these problems just appear one day or was it a slow progression. I was not aware that rad damage happens this way but I guess I should not be surprised because I did know that the effects of chemo can appear years down the road. Anyway good luck to you.
John0 -
TubeHondo said:Hi Denny
On your PEG tube what type do you have, I understand there are a few types. A regular tubes and a button types also how often does it need to be changed or replaced?
Thanks
Hondo
Hondo,
I have the standard G-tube which simply puts the food into my stomach vs the J-G tube (that may not be the right name) which is inserted into the mouth of the intestine. I think the JG tube is recommended if you have a problem with reflux however I don't know if you can just squirt the food in as fast as you want. I think mine is an 18 guage tube. The first tube had to be rpplace in a year because I used the crimper too much in the same place and it started to leak. The next tube was a 22 guage and very stiff. I had a feeling it was not a good tube almost immediatel because it was simply too stiff. It came out almost immediately which was fine with me because it was very uncomfortable at night. They replaced it with another 18 guage and it is working much better. I learned not to tape the tube to my stomach because that too causes a crease which over time will develop into a crack. As I stated earlier, since I have reverted to normal food vs Ensure I feel so much better and not as tired as I was.0 -
Johnjtl said:Denny
Man I feel for you. Did these problems just appear one day or was it a slow progression. I was not aware that rad damage happens this way but I guess I should not be surprised because I did know that the effects of chemo can appear years down the road. Anyway good luck to you.
John
First of all understand that the after effects I have are rare and not the norm. Dr told me these signs usually appear at the seven year point whereas mine didn't show up until the 12 year point. All of this happened over a 7-12 month period except the numb chin which happened probably 1 1/2 - 2 years earlier. It isn't a big deal if you simply attack each thing one at a time. Really the worst part was the amount of time and effort it took to find out what the problems were and the cause. I must have seen at least seven specialist before I found someone who had worked with problems like this. Most ENT's have not encountered these problems and are not aware they exist. My regular ENT told me that he has never encountered this in any of his patients before but now he will know what to look for.
I recall when the Dr told me that all we could do now was treat the symptoms (he has many folks who are in worse condition than I especially with the narrowing of the esphpagus). I told him "well what you are saying is that I'm in the s*** pile", he smiled and said "yes but you are on top of the pile".
I just think it is good for folks to know and not meant to cause concern because I wish I had known this information when I started having problems.0 -
Hi HondoHondo said:Hi Louceil
I have the same problems with blood pressure one time it is too hi the next it is too low. My BP goes from 225/115 to as low as 55/40 before I faint. This is due to radiation damage to the Carotid Sinus in his neck. I will send you my contact info as I like to know what type of Cancer your husband.
Carotid
Sinus
God bless
Hondo
Thanks for all of the info. My husband Louis had SCC of the left tonsil in May 2007. The blood pressure issue started in 11/10 and he developed syncope (it dropped so low he fainted). Since then the bp has spiked more than drop and his hypertension dr. (and other cadiologists we saw) put him on various beta blockers. But then his bp would spike so high I had to take him to the ER a few times and one time it took them 14 hrs. to get it down to a normal range. His hypertension dr. said his sodium level was out of whack and had taking in 3600 mg. of salt daily. We stopped that after no change and saw another dr. He's had a tilt table test, wore the Holter monitor for 24 hrs, had an MIBG scan to see if there was an issue with his adrenal glands (they also play a part in managing your bp) and other tests. They were trying to rule out everything and did say since the tilt table test was negative, it was highly unlikely that his barorecptors were the problem. So, now he's on Metoprolol 25 mg. (again) and compression stockings and we continue to monitor his bp at home.
In the past year alone he has experienced various new conditions, like:
the aspiration was so bad and was coughing up so much blood that he ended up in the hospital in Sept. for 10 days with aspiration pneumonia. He had bacterial pneumonia in June, in and out of the ER for the bp spiking too high and dropping too low, his head jerked uncontrollably, his chin was numb and the nerve on his neck would jump (this has now stopped). He has severe carpal tunnel in his left hand and some in his right which they say is from the chemo causing nerve damage mostly in the brachial plexus. He has seen a few different neurologists and finally the most recent one suggested "trying" carpal tunnel surgery after Jan. Amen to that! In Oct. the swallowing issues started, mostly with the aspiration so I was pureeing all of his foods. He was using a nebulizer for the excessive mucous. Just recently twice a day and developed thrush and that's when the tongue spasms started. His tongue is now higher on the side he had radiation on so his ENT said that it's related to the radiation. That seems to be the standard comment for all of his other issues from his other dr.'s too. His esophaegus was dilated on 11/15 and he can swallow ok but the tongue issues make it difficult. So, after meeting with his ENT and 2 other dr.'s yesterday they are recommending a GTube because he's losing so much weight. He had one in 2007 and is doing all he can to avoid it now. But after I read him alot of the comments on this site he's seeing the inevitable. Who knows it may only be temporary. I do think that alot of the meds he's had since 2007 have caused some and magnified some of his conditions too. It's all in God's hands and in his plan and we just keep praying.
Sorry for rambling but I can express more in detail when writing.
We just have to ALL stay hopeful!
God's blessings to you too,
Louceil0 -
GreenDGreend said:After treatment
I was treated in 1996 and about two years ago started have severe side effects. I went to numerous specialists until I found a Dr at the University of Alabama who was able to explain the mess to me, not to fix them but at least to explain. I started losing my voice first and went from raspy to barely legible. This is caused by the radiation paralyzing my left vocal cord; no remedy yet. I lost the use of my "swallow" muscles and I too was aspirating with results being pneumoinia. I had three bouts in four months plus serious weight loss. Dr told me I HAD to get a feeding tube because my weight loss would prevent them for being able to do the surgery if I lost more weight. I took the tube and it was the best decision I ever made.
I am totally numb in my chin area and the front quarter of my tongue (also if I stick out my tongue it points to the left). I have lost some feeling in my pinky finger on my right hand and the trigeminal nerve on my right jaw is also damaged causing neck and upper back pains and some serious neck spasams. Like Hondo I also get the ice pick pains in my right jaw which will drop me to my knees at times.
Now the good news. The tube should prevent the recuring pneumonia (I know hs doesn't want it, neither did I, but the quality of life improves). The tongue should stabalize soon. Mucus - we all have discussed this and there are numerous thread addressing it. Mucinex, peroxide and water mix, staem baths etc all will give some relief. For the pain they give me meds and muscle relaxers.
I was really down in the dumps when all of this seemed to happen overnight but I'm now getting used to my "new normal" and with my wife we are adjusting to the changes.
Good luck and he's not alone.
Denny
Hi Denny,
Thanks for you info too. Your story is so similar to my husband Louis. He had SCC of the left tonsil in May 2007. What type of cancer was yours?
He did have numbness in his chin too, his head would shake and the nerve on his neck would jump. But that's now stopped. Although, just recently his tongue has been having spasms, is higher on the leftside where he had radiation and too when he sticks his tongue put, it points to the right. His ENT says it's a neurological issue because of the radiation too. He's got severe carpal tunnel in his left hand and now right and the current neurologist suggested carpal tunnel surgery in Jan. His ENT and other dr.'s told us yesterday because he's losing weight so rapidly, he should go with a GTube. He had one in 2007 and realizes the seriousness if he doesn't. His mucous and the dry mouth is really bad, but we find products to help. I've also read him alot of the comments from this site that has been really helpful. I ordered the Stoppers 4 dry mouth spray for him, so we'll see if it's better than Biotene. Liquid Mucinex did help the mucous some, but mostly for the coughing fits.
His depression and insomnia were really bad too until his dr. put him on Remeron which has greatly improved both. We found that when he was on Lorazepam it was lowering his bp. So, AMEN to Remeron.
Blessings to you and your wife,
Louceil0 -
Type cancerlouceil said:GreenD
Hi Denny,
Thanks for you info too. Your story is so similar to my husband Louis. He had SCC of the left tonsil in May 2007. What type of cancer was yours?
He did have numbness in his chin too, his head would shake and the nerve on his neck would jump. But that's now stopped. Although, just recently his tongue has been having spasms, is higher on the leftside where he had radiation and too when he sticks his tongue put, it points to the right. His ENT says it's a neurological issue because of the radiation too. He's got severe carpal tunnel in his left hand and now right and the current neurologist suggested carpal tunnel surgery in Jan. His ENT and other dr.'s told us yesterday because he's losing weight so rapidly, he should go with a GTube. He had one in 2007 and realizes the seriousness if he doesn't. His mucous and the dry mouth is really bad, but we find products to help. I've also read him alot of the comments from this site that has been really helpful. I ordered the Stoppers 4 dry mouth spray for him, so we'll see if it's better than Biotene. Liquid Mucinex did help the mucous some, but mostly for the coughing fits.
His depression and insomnia were really bad too until his dr. put him on Remeron which has greatly improved both. We found that when he was on Lorazepam it was lowering his bp. So, AMEN to Remeron.
Blessings to you and your wife,
Louceil
SCC Right Tonsil. Sounds like he is on track a bit early to follow Hondo and me.
Hang in there it will get better as he learns to cope and accept some limitations.
Denny0
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