Side effects-Rituxan?
I am desperate to find relief of the pain. The psychological effects of long-term pain has changed who I once was. I find myself begging to anyone who will listen to help me. Has anyone else ever been through this? I don't know what else to do.
Comments
-
Rituxan treatment
Hello,
I had rituxan treatment for NHL large b-cell lymphoma and am in remission.
My doctor continued to prescribe rituxan after remission and I decided to
get a second and third opinion about this approach. The other two doctors
both said that rituxan should not be used as a maintenance therapy if you
are in remission, and that side effects are really not known for this drug.
I had a severe reaction the first time I took rituxan and went into severe
rigors so I did not especially enjoy taking it, but it obviously helped battle
the cancer.
So after my alternative opinions I told my oncologist that I would decline
anymore rituxan since its benefits are not proven at all in long term maintenance.
I don't know the details of your cancer but mine was a very aggressive type
and my doctor was siding on the safe side with more rituxan.
But back to your aches and pains-I had some of the same feelings with severe
fatigue, joint soreness and just a lack of energy. That was one of the
reasons I quit rituxan, but I really didn't know if rituxan caused those
symptoms or if my body was just exhausted from heavy chemotherapy, radiation,
mental and physical stress, etc.
Everyones' case is different I guess in terms of what your doctors'
reasons are. My doctor said I was depressed, which I was, and that depression
is actually physically painful(joint pain, muscle ache).
I don't know if your cancer is more indolent than aggressive which might explain
the rituxan maintenance. I don't know if you have had a second opinion but it
certainly helped to give me some options and perspective on treatment.
Hopefully all goes well and I helped in some way.
Take care and God bless.
Brad Pelzek0 -
Rituxan TreatmentBradPelzek said:Rituxan treatment
Hello,
I had rituxan treatment for NHL large b-cell lymphoma and am in remission.
My doctor continued to prescribe rituxan after remission and I decided to
get a second and third opinion about this approach. The other two doctors
both said that rituxan should not be used as a maintenance therapy if you
are in remission, and that side effects are really not known for this drug.
I had a severe reaction the first time I took rituxan and went into severe
rigors so I did not especially enjoy taking it, but it obviously helped battle
the cancer.
So after my alternative opinions I told my oncologist that I would decline
anymore rituxan since its benefits are not proven at all in long term maintenance.
I don't know the details of your cancer but mine was a very aggressive type
and my doctor was siding on the safe side with more rituxan.
But back to your aches and pains-I had some of the same feelings with severe
fatigue, joint soreness and just a lack of energy. That was one of the
reasons I quit rituxan, but I really didn't know if rituxan caused those
symptoms or if my body was just exhausted from heavy chemotherapy, radiation,
mental and physical stress, etc.
Everyones' case is different I guess in terms of what your doctors'
reasons are. My doctor said I was depressed, which I was, and that depression
is actually physically painful(joint pain, muscle ache).
I don't know if your cancer is more indolent than aggressive which might explain
the rituxan maintenance. I don't know if you have had a second opinion but it
certainly helped to give me some options and perspective on treatment.
Hopefully all goes well and I helped in some way.
Take care and God bless.
Brad Pelzek
First, Thank you for responding. It was the second opinion from the folks at Fred Hutchinson Cancer Center (after I was in remission) that made the recommendation to have it until relapse. I do have indolent Follicular Lymphoma. The biggest mistake I ever made was not getting a second opinion BEFORE starting treatment...I had no idea that I had options. Maybe I still would have chosen to go with this but I feel cheated from making choices that were mine to make. When I was first dx I asked my doctor what my treatment would be, he said "steroids"...when I went to the hospital for my first treatment the pharmacist came in to tell me about all the side effects of CVP+Rituxan before administering it. Both my husband and I were taken aback because we both had heard him say 'steroids', he never said chemotherapy.
I am going to a pain specialist tomorrow with hopes that I can be helped with something other than morphine as that is what my oncologist has me on now. I have lost much of my independence in driving and mobility around the house. We have a two story house and it is hard to get up and down the stairs and driving is now out of my reach. It's even difficult to type for longer than a few minutes but this is my vehicle to reach others. It is hard to live in the moment and enjoy remission when the pain is so present everyday. I have hope it is just fractured.
Thanks again,
Paulena0 -
Side effects of Rituxinpaulenarae said:Rituxan Treatment
First, Thank you for responding. It was the second opinion from the folks at Fred Hutchinson Cancer Center (after I was in remission) that made the recommendation to have it until relapse. I do have indolent Follicular Lymphoma. The biggest mistake I ever made was not getting a second opinion BEFORE starting treatment...I had no idea that I had options. Maybe I still would have chosen to go with this but I feel cheated from making choices that were mine to make. When I was first dx I asked my doctor what my treatment would be, he said "steroids"...when I went to the hospital for my first treatment the pharmacist came in to tell me about all the side effects of CVP+Rituxan before administering it. Both my husband and I were taken aback because we both had heard him say 'steroids', he never said chemotherapy.
I am going to a pain specialist tomorrow with hopes that I can be helped with something other than morphine as that is what my oncologist has me on now. I have lost much of my independence in driving and mobility around the house. We have a two story house and it is hard to get up and down the stairs and driving is now out of my reach. It's even difficult to type for longer than a few minutes but this is my vehicle to reach others. It is hard to live in the moment and enjoy remission when the pain is so present everyday. I have hope it is just fractured.
Thanks again,
Paulena
Hi Paulena,
I was dx with NHL Stage 4b...large B cell, T cell enriched. I have been on Rituxin for almost a year. From Sept-Feb my treatment was R-CHOP. Since April I have been on RICE. I have had absolutely no side effects from Rituxin. I know two other NHL patients who are not experiencing any side effects from Rituxin either. You mentioned steriods earlier. Steroids were also a part of the treatment process. When I began my treatment I was pretty sick. My body stopped producing blood. My bones were impacted with Lymphoma. I was a reck. The first thing my Onc did was give me a treatment of steriods. This first treatment made me feel sooooo much better.
A part of the R-CHOP treatment is Predisone which is a steroid. Predisone is taken for determined amount of days during or after each trmt.
I can understand the joint pain and am happy you are seeking a pain specialist. When I had joint pain last year, my Oncol prescribed Celebrex which made a big difference! I have not had the need to use Celebrex in months, but when I used it...it worked!
I hope this information helps you. Be blessed.0 -
Rituxanpaulenarae said:Rituxan Treatment
First, Thank you for responding. It was the second opinion from the folks at Fred Hutchinson Cancer Center (after I was in remission) that made the recommendation to have it until relapse. I do have indolent Follicular Lymphoma. The biggest mistake I ever made was not getting a second opinion BEFORE starting treatment...I had no idea that I had options. Maybe I still would have chosen to go with this but I feel cheated from making choices that were mine to make. When I was first dx I asked my doctor what my treatment would be, he said "steroids"...when I went to the hospital for my first treatment the pharmacist came in to tell me about all the side effects of CVP+Rituxan before administering it. Both my husband and I were taken aback because we both had heard him say 'steroids', he never said chemotherapy.
I am going to a pain specialist tomorrow with hopes that I can be helped with something other than morphine as that is what my oncologist has me on now. I have lost much of my independence in driving and mobility around the house. We have a two story house and it is hard to get up and down the stairs and driving is now out of my reach. It's even difficult to type for longer than a few minutes but this is my vehicle to reach others. It is hard to live in the moment and enjoy remission when the pain is so present everyday. I have hope it is just fractured.
Thanks again,
Paulena
Hi I have indolent follicular NHL stage 4 grade 2 and was also given CVP w/Rituxan. I now do the Rituxan as maintenance every three months. I am also in pain but just figured 59 years of abusing this body is what is to be expected. My lower back is terrible and I have had cortizone shots and may need surgery. I believe this is unrelated. About the second opinion....I did get one from Dana Farber and am comfortable with the CVP-R vs. CHOP-R. It is less toxic and has the same results. It is widely used in Europe and I am in clinical remission. I think we can be assured that this disease is going to come back and when it does they will likely use the CHOP-R. I did not loose my hair with CVP-R. I had the most difficulty with the prednisone....I was literally awake for a couple of weeks the first go round and had to get some very potent sleeping aids to finally enable me to get to sleep. Re-cap: second opinion would have made you feel better but I did get two and I think you took the right course. Prednisone is the steroids and when off that you do feel more pain. Good luck with the pain management and with the cancer...stay mentally tough!!0 -
Side effects of Rituxin
Paulenarae: I also have NHL, had it for 8 years. I have also had severe pain due to Rituxin and experienced the same pain you have. It's horrible and I have begged God to go ahead a take me when this happens. They should be pre-medicating you with Tylenal, Benadryl and I think steroids before they give you the Rituxin to help wiht the side effects. I usually have them give me Dilaudid for this very severe pain. Also, I have to be admitted to the hospital every time I take the Rituxin so they can put it in me very slowly at a rate of "25" flow on machine, otherwise I will experience that severe pain. It takes about 2 days to get the Rituxin in me. After the Rituxin they then do the rest of the chemo. If you can get your doctor to use the slowest rate of flow of the Rituxin into your system and pre-medicate you with the drugs I mentioned, I think you would be alright. There is no reason why he can't do this. But remember, ask for the big drugs for the severe pain, then stop the drugs when you finish the Rituxin. Hope this information helps you, some doctors are just not informed enough in treating a patient using Rituxin. There is no reason you should have to suffer like this.
If your doctor has any questions about this pre-treatment and slow flow of Rituxin, ask him to check with MD Anderson in Houston, they see a lot of this. He should ask to speak with Dr. Barbara Pro, my oncologist. Phone number is: 713-791-2121, ask for the Lymphoma/Myeloma Clinic.0 -
Rituxan treatment effects
Hi I am new today saw your concern I just wanted to say I too am having this maintenance treatment and I am called in remission now after 1 1/2 years of treatments.I had CHOP PLUS RITUXAN FOR 8 TIMES THEN NOW I HAVE ONLY THE RITUXAN AND IG IV FOR ME I HAVE DONE WELL SO FAR BUT I DID SEE A LYMPHOMIA DR. IN ST. LOUIS MISS. THE 10TH OF SEPT. 08 SHE TOLD ME IT WAS NOT HER ADVICE TO GIVE THE RITUXAN MORE THAN 2 YEARS AFTER THE CHEMO. For me that will mean one more year.Please keep in touch .Have you ask other drs. for advice?0 -
rituxin maintenance
I have just passed 5 yrs remission Oct 22nd....I had CHOP and Rituxan, plus a stem cell transplant. It was at a well known Cancer Center.
My daughter does cancer research and at the time of my treatments she was working for the Co that developed Rituxan.
I am continuing maintenance treatments and will for the rest of my life. No side effects since my first 2 treatment. My side effects were as a result of my extremely high white count.
I am grateful to have the option of maintenance....I think that's what keeps me sane.
Good Luck in whatever you decide.0 -
I understand and hear you.
Hi,
I too have been getting rituxan for almost 3 years now. I am beginning to feeel different side effects and such. at first, i thought it was due to my "autoimune difeciancy, but we now realize it is from the Rituxan......This was my docs concern, as i already had a Autoimmune disease and was receiving IVIG antibody replacement every 28 days. I am still gettting that, and now since i was diagnosed in 2004, with NHL satge 4, i too am experiencing some of what you are!
This drug has side efffects, and they are doing studies to rack reaCTIONS AND SUCH. So, i strongly feel that one must do what is needed, to improve ones quality of life
Please know, that you are not alone, and i too suffer w/so many side effectsa and such.
Peace,
Lynn0 -
Hi Donna,Donna D said:Rituxan treatment effects
Hi I am new today saw your concern I just wanted to say I too am having this maintenance treatment and I am called in remission now after 1 1/2 years of treatments.I had CHOP PLUS RITUXAN FOR 8 TIMES THEN NOW I HAVE ONLY THE RITUXAN AND IG IV FOR ME I HAVE DONE WELL SO FAR BUT I DID SEE A LYMPHOMIA DR. IN ST. LOUIS MISS. THE 10TH OF SEPT. 08 SHE TOLD ME IT WAS NOT HER ADVICE TO GIVE THE RITUXAN MORE THAN 2 YEARS AFTER THE CHEMO. For me that will mean one more year.Please keep in touch .Have you ask other drs. for advice?
I was reading your comment, and i had the same treatment. I was diagnosed w/An autoimmune disease about 10 years ago and have been receiving IV IG antibody replacement therpy every 28 days. Then in July 2004, i was dioagnosed w/Cancer. I too have many side effects because of the on going combination of the differnt IV infusions, but I just keep on praying.
Tonight, is the first timer i have actually reached out to chat.
We can all give/receive courage and wisdom from one another.
Peace,
Lynn0 -
LynnLDD12 said:Hi Donna,
I was reading your comment, and i had the same treatment. I was diagnosed w/An autoimmune disease about 10 years ago and have been receiving IV IG antibody replacement therpy every 28 days. Then in July 2004, i was dioagnosed w/Cancer. I too have many side effects because of the on going combination of the differnt IV infusions, but I just keep on praying.
Tonight, is the first timer i have actually reached out to chat.
We can all give/receive courage and wisdom from one another.
Peace,
Lynn
Thank you for your response. I am trying to write my story for others about my journey with cancer.I had no idea it would be so painful. I am having to work on it a little then back off.I want to help others get treatment sooner as I was almost dead before they found my cancer. I am struggling with depression .I have lots of family pressers can't talk about but I keep the Faith!! I have IVIG AND RITUXION NOW. Thank you Donna D0 -
Keeping the faith.Donna D said:Lynn
Thank you for your response. I am trying to write my story for others about my journey with cancer.I had no idea it would be so painful. I am having to work on it a little then back off.I want to help others get treatment sooner as I was almost dead before they found my cancer. I am struggling with depression .I have lots of family pressers can't talk about but I keep the Faith!! I have IVIG AND RITUXION NOW. Thank you Donna D
Donna,
i understand, and i encourage you to honor yourself and do what feels comfortable for you. I will pray for you, and that god helps to lesson your pressures.
Peace,
Lyn0 -
CHOP-RLDD12 said:I understand and hear you.
Hi,
I too have been getting rituxan for almost 3 years now. I am beginning to feeel different side effects and such. at first, i thought it was due to my "autoimune difeciancy, but we now realize it is from the Rituxan......This was my docs concern, as i already had a Autoimmune disease and was receiving IVIG antibody replacement every 28 days. I am still gettting that, and now since i was diagnosed in 2004, with NHL satge 4, i too am experiencing some of what you are!
This drug has side efffects, and they are doing studies to rack reaCTIONS AND SUCH. So, i strongly feel that one must do what is needed, to improve ones quality of life
Please know, that you are not alone, and i too suffer w/so many side effectsa and such.
Peace,
Lynn
Hi,
I was DX'd with diffuse large B-cell nHL, w/splenic involvement and T-cell rich in Aug 2004. Did 8 rounds of CHOP-R. Had strong reaction to Rituxan on first infusion - the "shake and bakes" - low fever, rigors, nausea, etc. Lasted under 5 minutes and was minoir compared to the B-cell symptoms I was having before the treatment. They backed off the infusion, treated the symptoms and finished the dosage. I felt so much better as my fevers disappeared overnight (Prednisone, no doubt) that I didn't think much of the reaction. Did not have any reaction in the remaining seven treatments. I had bone pain (minor) during teatment, but I attributed it to the Neulasta.
After last infusion I was told I had a near complete response - the spleen and all nodes except the largest two had returned to normal size. Been doing well until last June when some nodes increased and showed hot on a PET. A biopsy at the time showed a normal reactive node, but 3-4 months later, nothing has changed so they are going in for another biopsy. Feeling great (no B-cell symptoms), so don't know where I am headed.
Always wondered if I should have had more treatment but hearing some of your stories, perhaps I am lucky. Keep well.
---
JB0 -
pain after rutuxin also
I was diagnosed w/ folicular lymphoma last March and had three months of chemo (CHOPS) and was put on the rutuxin as well. I had the rutuxin in March and recently I have been having a lot of the symptoms you mentionjed. Joint pain and fatigue are the biggest problem for me and eye twitching, tingles in my fingers as well as swollen fingers are some other milder but def. noticable symptoms as well. I have an appointment w/ my oncologist this month so I will def ask about this becuase I have to have the rutuxin every 6 months for 2 years. Maybe there are some meds he can prescribe, even though ZI hate taking them. Let me know how ytou feel.
Elizabeth0 -
B Cell NHLelizabeth c said:pain after rutuxin also
I was diagnosed w/ folicular lymphoma last March and had three months of chemo (CHOPS) and was put on the rutuxin as well. I had the rutuxin in March and recently I have been having a lot of the symptoms you mentionjed. Joint pain and fatigue are the biggest problem for me and eye twitching, tingles in my fingers as well as swollen fingers are some other milder but def. noticable symptoms as well. I have an appointment w/ my oncologist this month so I will def ask about this becuase I have to have the rutuxin every 6 months for 2 years. Maybe there are some meds he can prescribe, even though ZI hate taking them. Let me know how ytou feel.
Elizabeth
It seems that everyone else has had Chop for NHL. I have only had the Rituxan, with steroid,
and Tylenol. I had stage 3, one in my neck and one behind my stomach. After 4 treatments, the scan showed I was in remission. Will take my last 2 year maintenance treatment in June 2009. I didn't realize that Rituxan made joints hurt. I hurt in my knees. But it is better than knowing I have the Cancer. I also have arthritis in my hands, so I attriputed the pain in my knees to the arthritis. Has anyone else just had Rituxan for NHL or has everyone had Chop also? If so how long in remission? I sometimes tingle in my left had fingers. But, since I am doing my last treatment I guess I will have to go with it. Will have another scan in July -09.
How long does remission usually last?0 -
B Cell NHL tooEvaline said:B Cell NHL
It seems that everyone else has had Chop for NHL. I have only had the Rituxan, with steroid,
and Tylenol. I had stage 3, one in my neck and one behind my stomach. After 4 treatments, the scan showed I was in remission. Will take my last 2 year maintenance treatment in June 2009. I didn't realize that Rituxan made joints hurt. I hurt in my knees. But it is better than knowing I have the Cancer. I also have arthritis in my hands, so I attriputed the pain in my knees to the arthritis. Has anyone else just had Rituxan for NHL or has everyone had Chop also? If so how long in remission? I sometimes tingle in my left had fingers. But, since I am doing my last treatment I guess I will have to go with it. Will have another scan in July -09.
How long does remission usually last?
Hello Evaline~
I was diagnosed with stage IV indolent NHL on 9-09-1999. I am 45 years old. I did CVP (only) in 2002 and the PHASE III clinical trial for MyVax with Dr. Levy @ Stanford. I was in "remission" for about 4 years and then we started noticing growth in the CT scans. Last August I did my first Rituxan treatment (severe allergic reactions) and have been doing this one-day treatment every 3 months. I ALSO have experienced continued side effects in the days following each treatment. They seem to be getting worse, though. Right now I'm feeling nauseous, achey all over, extremely bloated, fatigued, and generally NOT WELL.
After reading all of these 'posts' I am encouraged...I'm not alone and I'm not imagining all of these symptoms. I was thinking it was all in my head, since my doctor presented Rituxan as practically 'symptom free'. My doctor wants to continue doing the Rituxan treatment every 3 months for another year.
How are you doing now?0 -
Side effects from RituxinKristine 9.9.99 said:B Cell NHL too
Hello Evaline~
I was diagnosed with stage IV indolent NHL on 9-09-1999. I am 45 years old. I did CVP (only) in 2002 and the PHASE III clinical trial for MyVax with Dr. Levy @ Stanford. I was in "remission" for about 4 years and then we started noticing growth in the CT scans. Last August I did my first Rituxan treatment (severe allergic reactions) and have been doing this one-day treatment every 3 months. I ALSO have experienced continued side effects in the days following each treatment. They seem to be getting worse, though. Right now I'm feeling nauseous, achey all over, extremely bloated, fatigued, and generally NOT WELL.
After reading all of these 'posts' I am encouraged...I'm not alone and I'm not imagining all of these symptoms. I was thinking it was all in my head, since my doctor presented Rituxan as practically 'symptom free'. My doctor wants to continue doing the Rituxan treatment every 3 months for another year.
How are you doing now?
I received Rituxin in 2000 when it had only been in use for about 2 years. I had a severe reaction to this drug (fast drop in blood pressure, almost passed out, severe aching pain all over body, fever, it was horrible). Since then that particular doctor has had it happened to a few of his other patients, and has since then come up with some kind of cocktail to give his patients before giving the Rituxin. (Dr. Ping Chue in Houston, Texas) I now go to MD Anderson in Houston and still have severe reactions to Rituxin even with the pre- administrative drugs. What they have to do for me now is lower the input of the drug into my body, as slow as they can get it in. It takes to days to get the Rituxin in my and I have to be hospitalized. If I haven't had the Rituxin in a long period, I get the bad side effects again no matter how slow they give it to me. So they stop the input of the Rituxin and give me an injection of Dialudid (pain killer), then they restart me and everything goes great after that. Some doctors want to give you just Tylenol; it does'nt work for the kind of pain I will experience. I now have my oncologist make sure that the Dilaudid is available before they start the Rituxin. It's a great drug, but the side effects can be hell. Ask your doctor about this information. Good luck to you Kristine and bless you.0 -
pain relief
Hello,
I'm sorry to hear about your pain situation.
My wife is battling bone mets and has a lot of
pain. She does get some decent relief with a
product called Soothanol X2 from Northstar
Nutritionals.
It actually works well, better than some of
the high does pain killers her oncologist
gives her.
Give it a shot, just search for it online, it
will help you I believe.
best of luck to you0 -
Rituxan side effectsrick8484 said:pain relief
Hello,
I'm sorry to hear about your pain situation.
My wife is battling bone mets and has a lot of
pain. She does get some decent relief with a
product called Soothanol X2 from Northstar
Nutritionals.
It actually works well, better than some of
the high does pain killers her oncologist
gives her.
Give it a shot, just search for it online, it
will help you I believe.
best of luck to you
Hi I have DLBCL lymphoma in my bone marrow of my left hip. I did 8 CHOP treatments the first three with rituxan. I then developed the most painful lung problem. The doctors called it organizing pnenmonia.. I was in the hospital for 30 days. Very painful. I still 6 months later have pain on some breaths but the PET scan shows it getting better. SO I can not take rituxan That is a shame too, because it is so benefitul I think. I also have whole body pain now that my predisone is down to 5 mg a day. but I had fibromilga before the cancer so it is still here HA
Good luck I hope you find some relief.
Judy0 -
side effects?
I am 30 yrs old is acase of Diffuse large B cell lymphoma stage one on R-CHOP treatment I receive it every 21 days..I have two treatment till now after first one I had no symptoms apart from simple headach and myalgia but after second treatment which was ten days ago I get severe bloating and severe back pain not respond to simple pain killer so I have to take tradmol to relief this pain .My doctor said It is not usual to have such severe pain with rituxan..I dont know if it is related or no..any idea plz?any one has such severe pain which is constant and continuous all days since I received the treatment
and what about this sooo severe bloating..?
I am happy to find this chat
sorry for my inaccurate spilling Engliash language my third language0 -
Rituxan TreatmentsKristine 9.9.99 said:B Cell NHL too
Hello Evaline~
I was diagnosed with stage IV indolent NHL on 9-09-1999. I am 45 years old. I did CVP (only) in 2002 and the PHASE III clinical trial for MyVax with Dr. Levy @ Stanford. I was in "remission" for about 4 years and then we started noticing growth in the CT scans. Last August I did my first Rituxan treatment (severe allergic reactions) and have been doing this one-day treatment every 3 months. I ALSO have experienced continued side effects in the days following each treatment. They seem to be getting worse, though. Right now I'm feeling nauseous, achey all over, extremely bloated, fatigued, and generally NOT WELL.
After reading all of these 'posts' I am encouraged...I'm not alone and I'm not imagining all of these symptoms. I was thinking it was all in my head, since my doctor presented Rituxan as practically 'symptom free'. My doctor wants to continue doing the Rituxan treatment every 3 months for another year.
How are you doing now?
I just finished my 2 year maintenance treatment of Rituxan. I have a Pet Scan Aug. 10, 2009. I have no other side effects other than I can't stand food. Can't seem to get my weight back up. Onc, said the Rituxan for me was a 50/50 chance. He mentioned a new treatment he is using on 2 of his patients now that is new that has a 93 percent rate. Can't remember the name of it, I still tire easily and have pain but, it could be arthritis. I will always wonder when it will return and I will have to go thru all of it again. Hopefully after awhile I will have more confidence. (I also had the steroid, Tylenol and benedryl)0
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