New to the club here..Larynx Cancer.
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Dear Steph how time flies.
As I read this 3rd treatment already.
Seems like yesterday you introduced yourself.
I am glad everything is going well.
In reference to the doctor that was a jerk wisely stay away from him.
He must have patients that are satisfied with him and get along with him but trust me if you can't stand him now it won't work when you are depending on him for life-saving treatment. Even if you would manage to tolerate him there would always be a little bug in your mind about him and an unsure feeling. My wife had an eye situation a number of years ago and we walked away from a doc after the first meeting as he was real cocky and sort of you listen to me and do what I say sort of approach hardly letting us get a word in edgewise. Also left a lady after one meeting as she seemed to be reading a script in her mind about my wife's condition and the treatment and didn't have thought of her own. The next doc we saw was compassionate and caring and was willing to listen and let us feel like we were working together to solve her problem. Many years later we are still with him for a follow-up now every 2 years.
As we always say on here you will be done before you know it. But when you are going through it it seems long and suddenly you come to the end of the tunnel and you are done and you truly do see the light at the end of the tunnel.
Wishing you the best-Take care-God Bless-Russ
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UPDATE:
Well, Monday will be starting my 3rd week with radiation treatment. Although, I have already been through 2 weeks, I have only had 7 treatments, but I am already starting to feel it in my throat. It is getting hard to swallow. I feel like there is a mini golf ball in my throat on the left side. It hurts to yawn, and even swallow water already. However, it isn't unbearable. If the pain level were to stay like this, it wouldn't be too bad. (I highly doubt that is possible)
I picked up some MM, but I don't know how that's going to help me. The box states not to swallow it, like you can the pure lidocaine. The inside of my mouth is not the issue. At least I will have it on hand.
Ear bothers me off and on. But not too bad.
I have some other weird thing going on with my left elbow with what seems like a nerve when I bend my arm a certain way. If that continues, I'll explain it in a later post. It may have just been a freak thing yesterday.
Mild erythema over neck... I've been diligent with that.
I've been filling out my Christmas cards today. So, if anyone likes to get on those trains and it makes you happy to receive one, PM me your address, and I'll send you one. :) I think it makes people feel cared about when they receive cards, and feel it's a lost art. (penning letters, and cards) It's so much more personal than social media and email!
Take care, each and every one of you!!!
-Steph
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Thanks for the update Steph. Your throat may feel sore already because it is just reacting a bit to a foreign invasion-radiation-the throat doesn't like that. Time will tell as you say early yet. I think you have the feeding tube so you can get pain meds in there if needed. Ahhhhhhh yes, the lost art of writing. Agreed people don't do much anymore just type on forums, etc. A lot led to that like 100 years ago people started getting phones. Now today they want to do it all on the phone, quick instant and no need to wait 5 days for a letter. Alas, it is personal and warms the soul and so few know about it anymore. I am even told the kids now are not taught to write in cursive anymore so they need an interpreter to read a letter to them-time moves forward then two steps back.
Take Care-God Bless-Russ
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Russ,
I don't have a feeding tube. I purposely gained weight prior to treatment to prepare. I have not been ordered to get one. However, If they expect me to maintain THIS weight and I will not be able to go back to my normal comfortable weight, I will not be happy. I wouldn't have gained the weight in the first place. I figure as long as I continue to eat and do not become underweight I should be okay. They should not keep wanting to face feed me. I am not losing weight from this cancer.
I was T1 when it was caught, then they moved it up to T2 right before treatment.
That is correct, most kids these days and a lot of young adults cannot read or write in cursive. I cannot imagine that. I have heard some schools will teach an elective course on it.
I'm not looking forward to the Holidays much. I am for everyone else, though! I'm just not "in the spirit" this year.
Next year!!!
Take care, Russ
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Steph,
I actually take it as a very good sign, that your Oncology team didn't feel you needed a feeding tube.
I personally don't think you'll have trouble getting back to your normal weight. Temporary throat pain and loss of taste makes it easy to limit food intake.
It's probably more important to find out what can keep you going (smoothies, soft food or whatever works). Treatment takes a lot of energy, and requires good nutrition to promote healing.
I know you're in the middle of your treatment, and I can remember it seeming like it took forever - but, you'll be past it, before you know it. Just keep counting down the sessions!
I got a kick out of your Christmas card offer - that's very nice of you - thanks!!
MG
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I notice that it has been ten days or so since you posted and I was just wondering if you are making it day-by-day okay? I had one Christmas that was a little unpleasant, but only one, and then I got another five (so far).
I wanted to comment about your mention of a nerve-thing going-on.
Obviously, I don't know where they are radiating you (in what directions, where beams are going in and coming out) but in my case my spine took some radiation and I ended-up with some temporary swelling. A few very odd sensations happened and I would sometimes lose track of exactly where one of my feet was. There was "electricity" down my spine and tingling in my hands and feet and... just odd sensations. It isn't really frightening, but it is new and weird and not-happy-making. Nobody told me that sort of thing was going to happen, so it did concern me probably more than it needed-to. It all resolved pretty quickly, but not fast-enough for me at the time.
Hang in there.
When my kids were still kids and we'd approach a roller coaster at an amusement park and they would begin to get a little anxious, I would tell them "Look at the people getting off. Do they seem like they had a bad time?" "If you are worried about being hurt, then ask yourselves how many people rode this ride before you just today." (and other words to that effect)
I know you aren't a child, but if it ever gets to be a struggle you might want to think your version of that thought. Lots of us unwillingly got on the ride, but after a while we all (okay, almost all) smile about it.
I don't think there are many here who would say it wasn't worth the ride.
Don't you hate the mask? They asked me at the end if I wanted to have mine. I won't repeat what I told them.
Bret
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Bret & Anyone else following:
There is a couple of other threads I've posted replies in. I meant to come back to my original here and catch up.
END of Week 4 - Happy New Year!
It's sort of funny you brought up that scenario . I tend to think like that. I do think about other people and what they have been through... So many lying in that room... that very machine... before me, machines before me, rooms before me, and after me. The versions aren't very different at all :)
As of Thursday, 4 weeks of this was over, and I have 4 more weeks to go. This has probably been a walk in the park so far. My first week was 3 days, and each sub sequential week has been 4 days after, due to the holidays and one other event beyond their control. That's what lead this into 8 weeks and will cause me to have 4 weeks of 5 day treatments left. If things wish to get stranger, the last week of radiation and the week or 2 after are supposed to be the bad weeks.
So far:
Swelling around my clavicles. I started to notice it last weekend. It's like edema there. Saw my oncologist Monday after I showed it to the nurse . Oncologist said we should keep an eye on it. He did not think that it was a blood clot because I have it on both sides... He actually said "I don't think I missed anything on the PET" I'm thinking to myself. "ugh. Please don't think out loud."
Then, that night I fell asleep early from a nap - woke up and my entire outer ear was numb. Crazy considering I've know I've slept on my ear numerous times in my life and never had that occur.
I have this ridiculous rash all over my shoulders, upper back/arms. I am "erasing" everything I was using and going back to ground zero and just using Aquaphor. I am thinking it was from a sweater I wore, but wonder why it's still here, or I have irritated it by scratching it, or it's a product I'm using. If the products don't make a difference the Opiate has to go next.
Still forcing solids down when I can. But I prefer Ensure with protein and it's not loaded with sugar.
Med changes: I was on Oral Oxycodone. My doctor has switched me to 15mg pills. I just picked them up yesterday.
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Regarding the nerves, you are so right. What started to happen to me in me arm went away after a few days. When I moved my left arm a certain way a nerve That runs down my elbow (it may have been my Ulna) literally gave the sensation it was wet. The first couple times I kept feeling all over my arm and the top of my t-shirt to see if something on the top of my sleeve was wet and touched my elbow. It felt that real and weird. I know how weird nerve things can get.
With that radiation so close to the spine, eeeek!
Not really bad on the saliva front or dry mouth yet, unless I sleep with my mouth open (brutally dry)
I haven't had any mouth sores or any other oral problems yet. I am trying to take the best care of my teeth as I can.
I can still talk, if I don't talk too much. I had a hard time talking when my dad was visiting because I talked too much. When it's just me and my husband here, I could go days without saying anything easily. Most of my support is given to me via friends through chat, so that works out well for me, especially with a condition like this! My voice is much better now, but I hadn't actually seen my dad in 3 years, and it makes it so much harder no to talk to someone when you haven't seen them in awhile... It makes a big difference.
Please ignore my typos, if you can. I looked over this a couple times, but haven't copied it out of here to edit it properly. I guess I try to to take thing so seriously right now. At least it's legible enough. It doesn't have to be perfect. I'm not perfect. I'm even a crooked smiley -- シ
Happy New Year!
Steph
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Steph,
I can comment on the nerve thing. I can remember that weird "wet" feeling, too. I'd check to see if my hand was wet.
It usually came and went, and got to the point where I barely noticed it.
I do agree that the last week or two, and then a couple more weeks after radiation is the worst. I'm not trying to make you feel bad; I'm just glad you're prepared for that.
The good news, is after that "two week after" thing, I recall healing up pretty quickly. It seemed like in a month, most of it was just a memory!
Hang in there...
MG
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Update as of RO appt last wednesday 01/05/2022.
RADIATION ONCOLOGY ON TREATMENT VISIT MD NOTE
Diagnosis:
Cancer Staging: Cancer Staging
Squamous cell carcinoma of left vocal cord (HCC)
Staging form: Larynx - Glottis, AJCC 8th Edition
- Clinical: Stage II (cT2, cN0, cM0)
Site(s) under treatment: Larynx and nodes
Cumulative dose/ # fractions 3600 cGy/18fx
Planned dose/ # fractions 7000cGy/35fx
Concurrent systemic therapy: None
S: Pain 5/10 to throat with improvement on oxycodone 2 tabs 2 times daily. Mild redness to treatment field, using aloe. Using mouthwash and fluoride paste from dentist. Increasing dysgeusia and odynophagia, able to tolerate solids with pain meds. Intermittent cough. C/o constipation, using miralax and colace, plans on mag citrate, used enema this am with moderate results.
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Haha, I thought about taking the bathroom stuff off, but if this can help with anyone lurking now or in the future which gives some info where my symptoms are during the 5th week, well ... I better leave it all in! I would like to add I have been on pain meds for a couple of weeks causing the constipation. I started on the Miralax a bit too late, I think.
When I do eat, I am still managing to eat solids, but the food has to be squishy. I can't munch on chips and salsa (I can't imagine) and I also don't really have that big of an appetite.
Regarding the pain. I don't take those meds 2 times daily. It's more PRN, before I plan to eat as an FYI (due to the constipation) I'm trying to take them even less due to bathroom issues.
-Steph
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Steph,
I can remember the alternating constipation and then diarrhea (just to make things interesting). I used a stool softener, which seemed to help a lot.
I can also remember thinking that something like a piece of pizza was an impossible dream - WAY too dry and abrasive. I wondered if I would EVER eat anything like that, again in my life.
But, a couple months after finishing treatment, I was starting back on the track towards eating normally again.
The only weird holdover, is that meat can sometimes lose it's taste, after a few bites. I'll eat something like a meatloaf, and after 6 bites, it tastes "faded". I guess that should just help me keep my weight down.
I did go to a get-together, yesterday though - and a lady had made some Buffalo Chicken dip - which tasted GREAT!
Your countdown was at 15 - if I remember correctly. You will be heading back to a normal track in a few weeks!!
Hang in there!
Curt
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Heya Curt!
My taste has change, and it's not be a sudden thing. It could have been with some food that I just haven't eaten in awhile. It could also be the day. It seems to vary when I do eat. Some days I have to force myself to eat. I rather not eat at all, but then I think about healing and that it will do my body good.
Yep, that was correct on 15th today, so 14 more to go after today. two more weeks after this week. Getting closer and closer! Boy will it be nice to get these over with, but I hope they take care of it and it's gone. It would be a shame to go through all of this only to find the tumor is still hanging out. I know it happens.
I've been rather down again, so I need to straighten it out and get back to trying to think more positive. Sometimes it's just difficult to do, and put on this happy face all the time for everyone and I never get any alone time to ever really cry it out.
Anyway, Curt I hope you, and everyone else hanging out on here that reads this had a wonderful holiday and have gotten their rest if they were hosting and cooking for holiday!
-Steph
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You're oh so right about nutrition and healing, Steph. As for eating, I was FT-dependent all thru tx so I cannot relate to that; however, I might be an example of what not to do, because there were days midway thru tx I was only pouring 1-1/2 8 oz. Jevities (500 calories) down my FT and ended up in the Hospital at the start of week #6 getting antibiotic drips. Figure I wasn't giving my body the food it needed to fight the battle with concurrent C & R.
Glad to hear you're past the halfway mark, and don't think for a second that all the tumor won't be gone.
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Steph,
Taste loss is just something impossible to describe to a person who hasn't been there. As I've mentioned on here, if you can't taste something, you don't want to swallow it!
I appreciate the countdown. It reminds a person that they're progressing, towards getting DONE, and then on the way back to normal!
So far, from what you tell me, you appear to be handling the fight like a Pro - and look to be an easy bet to knock it out!
Thanks for letting us know how you're doing!
Curt
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Logan,
Thanks for you comments. It wasn't a fun night, but I'm glad the "episode" didn't last too long. I think so far this was the worst middle of the night coughing episode due to the fact I was actually stopped up quite a bit, and usually I haven't been like that. This is going to be a pain in the neck for sure. After what you've said, I think I need to remember to take to multi-vitamin and take it with one Ensure Max Protein for the extra vitamins each day on top of other things I eat.
One other thing that's scaring me is I'm blacking out. My yesterday's are disappearing and I don't think it is drug related. The pain meds I have are Oxycodone HCL 15 MG 1/2 to 1 every 8 hours. I don't take them every day. They don't make me loopy. They do take the edge off for me to eat. I may stop taking them entirely and drink my calories, so I don't have to deal with the constipation.
I'm worried I am actually so tired it's causing it. I can go to sleep very quickly. I actually have to make a small effort to stay awake during the day, and it's a bit of an effort to keep living like my life is like it was before I was getting radiation.
I'm sorry to talk so much. I really need to keep eye on on what's going on with me and write down notes to share for others until my end with this.
I literally asked a radiation tech today how long of a life I have left today (people like me anyway) I've been pretty down the last couple days. He was one I have only seen a couple times, and was the only person left in the room. He told me they are treating me to cure me. That's the treatment plan. They are covering my whole neck and nodes, plus my vocal cords, and malignant neoplasm. (that sound nicer than "tumor") But I believe I didn't go into this seeking radiation for palliative care. I would gives this is what the usual regime would be for this considering I didn't have surgery.
Logan, I know I have read you story, and you touched on this. So I'll check out why they can't do some surgery to clear some scare tissue, then stretch your esophagus, so you can eat again. I'm off to go do that again.
Have a good night!
My Bestest,
Steph
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Curt,
The loss of taste is weird, as it usually depends on what is eaten or drank prior to something else. I can eat something, and then drink water and water taste like something totally different, or sweet.. or not so pleasant tasting.
I have not even attempted carbonated drinks and I have not drank Soda/Pop for years. I used to drink Diet Coke like a food group. Literally it's probably been over 10 years, So I couldn't compare that.
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Hey Steph. I'll also paralleling you through throat cancer. I'm in Houston though at MD Anderson. I live here so perhaps I'm lucky I am so close to a world leading cancer fighting facility. Today is Thursday January 13. I am 49 yo and I have the good old HPV throat cancer as well. My tumor was on my left tonsil though, that an ENT removed hastily in October. I'm really glad he did even though my MDA care team was really concerned. It had metastisized to the closest lymph node which the ENT also removed but didn't look at the next one in line. I looked at my radiation map and it overlays exactly where **** was lighting up in the PET in that rear lymph node area. I was a part-time smoker from my late 20s until 2010 when I stopped. I drank voraciously for decades and that probably woke my little friend up who infected me 30 years ago to try to kill me (I'm in business development in the oil industry so drinking is part of the gig (well, was). This process has turned me into a sober person overnight. I'll never put anything past my throat that could irritate it ever again. They are clearly targeting the lymph nodes behind my jaw in the left side and the remnants of what was outside the surgery margin. The reason my doctors were so concerned was the tonsillectomy scar. They said it was/is huge. No wonder I was in HORRIFIC pain after that as I also bled out 4 days after surgery on Halloween night. They were concerned about nightmare pain and had to delay treatment for 2 further weeks. I have 9 radiation visits after today's. I have no throat pain save for a slight discomfort that is easily controlled with 300mg of gabapentin twice a day. Weird but I think the tonsillectomy scar tissue may be protecting me. I was on cisplatin for three rounds (no port) that was delivered every week. It roasted the veins in both arms but I saved one good one for the remaining chemo which they switched to Taxol(sp?) and Chromoplatin (which sounds like a painting technique, lol). The nausea from the new cocktail vs cisplatin is night and day better. I never took Zofram since, while healthy, I'm prone to constipation and such, got an amazing prescription for Dronabinol (Marinol). I went from 5mg three times a day to 10mg after the 3rd cisplatin round. I was pulled from it after three due to the tinnitus that developed. It always sounded like it did back when I was a kid the day after a heavy metal concert...super high pitched noise that is s s l l o o w w l y going away. My brain should re-wire it after it sees that the nerves it's pinging aren't answering in a couple of weeks. Sucks. I'm in a peaceful space though. I take everything day by day. I swam 1000y 2-3 times a week until the chlorine got too much after about week 3. Additionally the cisplatin just wiped me out eventually so I stopped for that reason as well. I'll do some yoga today as I'm getting very ancy laying around. I meditate every morning for about an hour and a half. I cannot recommend this enough during treatment as I feel it's been my game changer. I listen to this Buddhist "Om" track https://youtu.be/oHc2nIR2SEU each morning and a harmonize with the Om sound, creating a super powerful vibration in that area. The frequency of the track seems to work with energy in the local area (blue center throat chakra). You might really benefit as would all. I've been drinking my meals since week 4 as my taste buds said no to everything but a faint vanilla flavor it can sense from my smoothies. We have a Ninja blender that can make quick one serving shakes and a traditional attachment for larger batches. My weight has stayed very steady. I've only shed about 3 of the 15lb I put on prior. The doctors are really showing they're impressed with my diligence. The flouride trays blew up my gums week one so after two weeks I couldn't stand the gum irritation and switched to just brushing in the Colgate Gel-Cam each evening. Per the shakes I use a secret weight maintenance ingredient...MCT oil. Each tablespoon is worth 130 cals!! It makes the smoothies a tad more viscous alongside the protein powder, collagen, cacoa, maca, spinach, banana, strawberry, blueberries, almond milk, and honey, we make each day twice (I also have an amazing chocolate cake avocado smoothie which will blow your mind - avocados are another secret weapon as they create that creamy mouth feel). You can also put 2 tbsp into your morning coffee (except chemo day) to boost the caloric value. I got some Kale Farms 1.0 and 1.4s. These are like Ensure without the nasty chemicals. I don't like the taste in my present condition so I pour it into my Ninja single serving cup and put in a ripe banana with a scoop of protein powder and a table spoon or two of MCT. (DOCTORS GET 10 HRS OF NUTRITION TRAINING IN MED SCHOOL). Just saying...they never recommended this to me so my wife and I figured it out. Get some Liquid-IV and use it the day before and during chemo to boost hydration immediately. I cannot recommend this enough to everyone. The taste issue with me is the worst. I'm a total foodie and had a great palate for wine and craft beer. I don't care about the alcohol anymore but Lord do I pray for those prized taste buds to return someday. I close my eyes when food commercials come on, watch no cooking shows, and breathe a lot through my mouth to not smell so much. I have Tramadol ready at the helm should I reach into the tonsillectomy pain. 9 to go after today 9 to go after today... And speaking of prayer during chemo and radiation I ask my higher self to protect me while I'm there. I ask it to kill the cancer but spare the healthy ones. This may have also contributed to my progress but that's unknown. Hope some of this helps. I've enjoyed reading your posts on this thread. Praying that week 6 is tolerable as well as the following two weeks.
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Good morning Swim,
Wow, I'm all the way across the country on the East Coast across the country from ya! Thanks for the tips you have. It seems most people bought the Vitamix, but I didn't want one due to their size. I bought the Ninja as well because it's smaller. I thought a Vitamix would be overkill.
Regarding your tips on chemo, luckily, I did not have to have that. But maybe they will help someone else. Just radiation here. I was T1N0M0 when they first found it but due to delays (which weren't too long) I was upped to T2N0M0 before treatment, so I was close to T2. Due to location on my left vocal cord, they try radiation before surgery due the most minimal amount of damage to your voice... I didn't have the time to fly around and see doctors about laser, but I read about a few hospitals that performed it on T1-2 malignant HPV tumors. However, I did get a 2nd opinion - the ENT at a hospital a couple hours away didn't think laser was a good idea in my situation and radiation was better to try first.
Yes, was a smoker here. Drank as well, but more socially, it was not my H2O. I did quit smoking around the same time you did. A couple years later. I started vaping to quit. So, it's hard for me to date when I quit cigarettes. So, it's been probably 10 years for me. The only thing I can figure may be one of those 2 items could wake up HPV by decreasing our immune system as that would usually keep it at bay. We are both exercisers. So, you think that would have helped counter the bad stuff... However, I was also going through menopause. I've read that woman tend to have an HPV recurrence around that time, so that may have been a part of it with me. Heck, we just don't know. All we do know is to live as healthy as possible and keep our immune system as happy as possible so it will help keep it from coming back! We know drinking and smoking are not good for the immune system, and exercise, Spinach and Salmon are!
I did the same thing you did and gained weight before the radiation. I've lost 10 pounds which was inevitable. I wasn’t at my normal weight. Considering, I gained the weight quickly, it was probably a lot of water retention. I can still lose a few more pounds before I'm in trouble, so I think I gained as much as I could in a month, I surely was not comfortable in my skin. I'm still eating solids, which is insane. I have had a difference in taste, but not as bad as most people describe. However, there must be a difference between people that have the cancer down in the lower part of their throat (me) and the back of the top of their throat (you) Where yours is very close to your mouth and closer to your nose than mine. On top of that you’ve been taking chemo, and that is a double whammy. There are a lot of positive stories on here and I can’t recall reading one where a person never got their taste back.
Yesterday I saw my Oncologist. I see him every Wednesday. They were worried about my neck. They are treating the tumor with high level radiation, and the rest of my neck with moderate levels. So, the burn is getting bad, and thinking about the skin on my neck and 11 more days to go after today = not fun. My Oncologist wants me to stop putting anything on my neck at all. I usually take a shower every day right before I leave to go in, maybe I should stop doing that and allow my skin at least a few hours after the shower. I believe he thinks I have sensitive skin and it's starting to react to the ingredients in things now that it's even more sensitive. Heck if I know when he then later said it was OK to use some sample cream the nurse gave me. LOL
Anyway, that's where I am right now, other than the coughing at night that wakes me up. However, I got more sleep last night. My throat was being kind to me, or I was just too exhausted for it to even wake me up. Other than that, I'm good! My neck may feel better after a couple days of rest this weekend.
Thanks for your other cool suggestions as well! I’ve been wanting to check out meditation for years, but I’ve never really known where to begin with it. Then I’ll get off track and forget about it.
You sound like you are in pretty good spirits and you are further along than I am, but I'll tell you I honestly thought I would be worse off right now than I am. Keep drinking your shakes. Your recipe is a good one, and will keep you healthy. Watch out for dairy if your saliva starts to get thick, and utilize the tips for dry mouth if you get that. I've not used fluoride trays, but I did get some fluoride paste. I got Mipaste from my dentist, and I just put it on my finger and rub it on my teeth (you may like this stuff, a lot more versatile) and I have a prescription mouthwash called CTX4 - I also bought a new Sonicare that has a water pic built in before this all started. I've got some other items I haven't needed to use yet.
There's your novel!
Take Care!
-Steph
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One other thing I wanted to mention was I really feel for you on that tonsil surgery. The pain I have heard people have to go through with that.
I remember being a child and kids would get their tonsils out and it would seem like it was just a small insignificant surgery for children, but when it comes to an adult it's a nightmare. It's crazy to think about nightmare pain. Whenever I hear people say they prefer just to die in their sleep peacefully, I don't understand why they think that just because they happen to be sleeping it's peaceful. How do they know they aren't dreaming what happens to them? How do they know they didn't wake up? It's weird to me.
I am person that used to get night terrors when I was younger.
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