-
My Daughter, Johnnybegood
Just wanted to let everyone know that I spoke to my daughter tonight and she sounded really good. Her latest blood test shows her platelets are up to 120. That's so much better than the 65-70 she been stuck at since last June She's hoping to get the drainage tube out and be able to go home tomorrow. Thank you all so much…
-
Warrior Tracking Chart
hi, One of the things I find hard to keep up on is where everyone is in their battle with the beast. I created a template of something that I would like to get your thoughts on as it might help others as well. I can keep it updated as long as I get the info in some standardized tabular format (yet to be developed). anyway,…
-
TEP Not Closing
I had a smaller diameter voice prosthesis inserted, with the hopes the hole (TEP) would close down around it. No such luck. I aspirate liquids, and am reduced to using good ol' ThickIt. I guess, one can get used to anything. Finished one month of chemo. Need a CT to see what the chemo did. The next round is in the planning…
-
No more cracked and irritated skin
Hi all, One of the many side effects seem to be various forms of chapped, split, rashed skin disorders. I had a single sore from my first round of induction TPF and grabbed the old bag balm without thinking. I also have a dry sore spot in my upper nostril so a dab there too. It got me thinking I never saw anyone mention it…
-
ENT today. Surgery Monday
So I went to the ENT today and had a scope done. Low and behold he sees a spot on my right tonsil. I will be having my tonsils removed and a biopsy Monday. At first I thought he was joking about Monday but then he sent my to Hospital to do the paperwork. So I guess it is for real. He says the spot is small and he will be…
-
Taste - Is There Hope?
I am 8 weeks out from my last radiation and chemo. I had (hope operative word is had) neck cancer, unknown primary, one lymph node involved. Had a neck disection, 7 weeks radiation and chemo. I think I have some taste back, but it is so hard to tell if I am really tasting a few things or just a sensation in my mouth. I can…
-
Survived This Week
Well, here I am again. Started out the morning in tears, probably just for the he!! of it. Sometimes, I just feel so darned alone. I certainly can't "dump" on my daughter all the time. And as I may have mentioned before, all those "friends" I worked with were just that, "work friends". There is one very special lady that…
-
When You Least Expect It...
Hi Folks, I'm home. A bit worse off for the wear unfortunately :( Surgery started with a look see around and a larygoscopy. There was a suspicious area in the back of my tongue that warranted further examination. Turns out they took out my lingual tonsils. They're off to the lab along with more BOT biopsies and the tumors.…
-
Finally got dentures today
Hi everybody its been a long road from April of last year when i had 23 teeth extracted to start treatment for tonssil cancer stage 4a hpv+ at the age of 29 now i'm 30 woohoo but today i got my implanted dentures there are defnitly some sore spots here and there but they look awesome just hard to get used to i'm going into…
-
Too much chemo for NPCA Non keratinizing Stage 2
I would like to inquire about chemotheraphy protocol. My husband was diagnosed of NPCA stage 2 he went to 3 cycles of cisplatin (1 day admission every cycle) and 3 cycles of cisplatin & 5fu (5 days of admission per cycle). His onco wants him to undergo last cycle of cisplatin & 5fu but before she told us that it will only…
-
What a day :(
On top of the stress of Jeff's cancer (seeing the oncolugist tomorrow for 1st follow up) my 13 year old daughter's father passed away this morning of CHF. I had to tell her when got home from school. She was very close to him. He btought her home last night agter her basketball game and looked and sounded good. You just…
-
Really Needed a Good Day
Friends, The first of many scans (CT Lungs) I will take on this journey came back clear after the "official" diagnosis. The first step of a thousand step journey...followup with ENT on Monday and we have sent primlinary reports to MD Anderson in Houston and waiting on them to set up a new patient appointment for the full…
-
PEG TUBE REMOVAL TODAY
Hi Everyone, I wanted to post an update. I think that those behind me in the treatments stage might appreciate the information. We all experience this journey differently but here is the latest with me. I finished my radiaiton and chemo treatments (for tonsil cancer on left side and lymph node on same side) on Dec 19th. I…
-
myxofibrosarcoma right nasal cavity
My mother is suffering from myxofibrosarcoma in right nasal cavity. Please let me know the survival possibility
-
Good news for a change
Finally we have received some good news. David is in complete remission from the Plasma Cell Leukemia. His is in doing a full body bone scan to see if there is progress on the condition of his bones. They are going to be doing a lot of tests in the near future. More PET scans, etc. They want to try to make the case the…
-
advice for problems week after treatment
Hi Everyone. I have been following all the posts and sending positive thoughts and congrats through the air but have not had any time to post. My husband and I and our two kids relocated to another state to complete weekly cisplatin and 35 rads which we finished last week. I have been homeschooling out kids, and taking…
-
Unwelcome, Unexpected Surprise
We met with the MDA Rad Onc today. The good news is that there appears to be no lymph node involvemnt in the lung area, so Ron will be preparing for 4 Rad treatments on the lung which the doc feels will eradicate that tumor. I'll make arrangements to get his teeth pulled as he prepares for the tougher phase, the 35 H&N…
-
How to add a friend
How do you add someone to your friends list now with this new format? You used to just click on there avator, but not anymore Sue PS Thanks ahead John..I know you will have the answer.
-
Appetite
I understand why I have lost my saliva and my taste but does anyone know why I dont get hungry ? I have to force myself to eat just to try to not lose anymore weight.
-
Olfactory Neuroblastoma
Hi my name is Jim...and you guessed it add another member to the OBN club. I just found out Monday that I have OBN. I have stage 2 pending my PET scan tomorrow or something like that. Right now my brain is swimming and not sure where to turn or what to do. Don’t know if I should stick with my current Dr., look for a second…
-
A side-effect
As some of you may know, I've been dealing with neck spasms on a daily basis for some time, now. Yes, arthritis has shown in two spots at the base of the Cervical section of my spine, but where the spasms happen is where I definitely got zapped with the rads. New Drs in my life, as my General Practitioner recently retired,…
-
Dealing with Idiots
Jeff's erbitux rash had really got bad.. it's on his face, hands and now stomach. He changed his fentenol patch today on there were blisters under it. No itch, just pain. He thinks he might have them on his tongue also..something popped and oozed on it. We went to the Dr yesterday. I called at 9AM and by noon did not hear…
-
more rechecks this afternoon
Hey everyone, Rechecking the lung and chest wall down at Masonic today. And it's suppose to snow. Alrighty then, should be a fun trip. I also want to bring up another issue that is important in understanding our dx's. TUMOR PROFILING This shows our specific DNA and RNA that could match up tx's in the future that could help…
-
Just A Random Thought
Hello All, Just up late and thinking. I know, bad combination. LOL On the Colon Board, we have a member who swears by TCM(Traditional Chinese Medicine). Since, I am relatively new to H&N Cancer and Lung Cancer, I was wondering if any of you have any experience with TCM for these types of cancer, in conjunction with or…
-
Cancer and sugar
Hello, I've heard from a friend that sugar in any form, even fruit should be avoided (for a while, for me) to have healthy cell re-growth and prevent cancer. This topic has surley been around, but is new to me. I've done a little reading online, there so much out there. I'm wondering how others here feel. I find it hard to…
-
Finding a doctor
Hello, I'm a 12 year stage 3 cancer survivor. I was diagnosed when I was 21 years old. I'm moving to Madison, Wisconsin and was hoping to get names of great doctors in that area. I also need a dentist who has experience working with oral cancer patients. Any help would be great.
-
Was it BS?
Just wondering what happened to the post from this morning from the "17 year old Cody" who was broke but needed to see a doctor? I hate to seem this way but I have a feeling it was a scam of some sort. I want to be wrong but something just didn't seem right. If I'm right in my thinking it's scary because someone out there…
-
New diagnosis-I have a Fur ball!
It is driving me C R A Z Y. All this hacking and gagging and throat clearing...and every now and then finally coughing up something that looks horribly similar to ear wax. I consulted with the cat (figured she was experienced in this area) but she just gave me a blank look and tried to drink the milk out of my cereal bowl.…
-
Just Starting the Journey
The past three weeks have been just crazy and I feel so out of control! Still in the staging process but looking at III tonsil SCC with left nodule involvment. I am just so scaried...my kids come home from school and I have to go to our bedroom because I can't stop crying. My wife has been incredible and I have just been…
-
3 weeks post Tx Update
All, I want to take a minute and say "Thank You"! You have all been there for us down this road, and I am sure will be there as we continue down the road. You held my hand, you listened, you gave advice, you shared your personal experience, all while you were undergoing your own personal experiences. At first I think Dan…