Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#65995 09-10-2007 06:51 PM
Joined: Feb 2007
Posts: 1,940
Cookey Offline OP
"OCF across the pond"
Patient Advocate (1000+ posts)
OP Offline
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Well i thought i would get the ball rolling by saying thanks to brian for the welcome addition of a place for those unfortunate enough to be suffering a scare or recurrance of their cancer.I am sure it will be a great board once every one gets familiar with it.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#65996 09-10-2007 07:57 PM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
And I guess I will have the honor of being the first "unlucky" to post here.

I saw my primary care doc today and he said he will do everything within his power to get my insurance company to cover treatment at Hopkins. Hopkins called us today and as soon as I get a clear chest CT, they will schedule the surgery. I'm anxious to have it done and scared to death to do it. I just wish I could fast forward 6 months or so.

I didn't have chemo with the first go around. I'm nervous about that, I hate the unknown territory of it. I'm also very nervous about vomiting with my throat being so "different" since radiation. I can't even imagine vomiting.

But, one step at a time, baby steps, and then recovery and remission I pray.

Love to all,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#65997 09-10-2007 08:06 PM
Joined: May 2007
Posts: 632
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: May 2007
Posts: 632
Today, hopefully, I get my last chemo Minnie--I haven't been sick once, and have been given tablets---teeeny, tiny ones to take in case of nausea--at every visit.
So hang in there Minnie and put that thought way to the back of your mind!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#65998 09-11-2007 04:33 AM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Thanks Brenda, that takes some of my nervousness away. Glad you're doing well with your treatments.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#65999 09-11-2007 05:31 AM
Joined: Jul 2005
Posts: 69
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2005
Posts: 69
Minnie,

I too, am dealing with another round of treatment. My doctor wants to do a 2nd neck dissection (same side, just lower) because of a swollen node that popped up in the last 3 weeks. A needle biopsy last week was inconclusive and showed atypical dysplasia. He is aggressive and wants to get everything out. If pathology after surgery shows any cancer, it will be chemo for me too about 6-8 weeks postsurgey. Let me tell you, it is no fun to throw up with our "changed" throats and minimal saliva. I won't go into a description but you can imagine! I had chemo before with the radiation and am not looking forward to losing my hair again but it does grow back.

I can relate to all your emotions right now - I just started back to college this fall and was perfectly happy and then boom - the hammer fell last week- now I'm trying to take the first round of tests in my classes with this huge distraction and wondering if it's even worth trying to keep up with the classes because it's going to take at least 5 years to get my degree it dietetics/nutrition - I want to work with head/neck patients. So in my dark moments, I tell myself I probably won't even be here in 5 years but that darkness doesn't last more than a few minutes and I pick myself back up. Like you, I have a great husband and as you said, I'll be damned if I'm going anywhere and let someone else have him! Let's both have a good day!

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66000 09-11-2007 09:59 AM
Joined: Mar 2006
Posts: 58
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2006
Posts: 58
My husband's cancer has spread to the right lung too. His BOT and neck area are still clear and bone scan and MRI are also clear, but he had so many nodes involved that we knew the spread was a real possibility. He is scheduled for several months of chemo, cisplatin and Erbitux, starting Sep 26. He wavers as to if this is even worth the trouble. He feels fine now---is not sick and has strong lung function. The idea of bringing sickness on now that he still feels well is almost too much for him to deal with. He will get the cis/erb combo the first and fourth week, and week 2 and 3 only Erbitux. I feel like I can't pressure him into treatment, but want him to at least start, and if it gets too bad, then he can stop. He had 2 sessions of cisplatin during radiation and did well--was not too sick from it. He is also permanently on a PEG tube. He never recovered swallowing function well enough to sustain and he aspirates. At times he just wants this to run it's course and be done with it. This cancer is evil incarnate.


Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
#66001 09-11-2007 10:08 AM
Joined: May 2003
Posts: 102
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: May 2003
Posts: 102
Oh my gosh, you guys did it. We all did it!! This portion of the website is going to be so valuable for both the patients and the families of those suffering a recurrence. Thank you Brian!!

Minnie, my heart and prayers are with you every day. I haven't been posting lately because it all gets to me sometimes. I've been on this Board for so long and have gotten to know and love so many of the people here. My heart goes out to you. I wish I were stronger and could be more supportive on a continuing basis. I am just so angry that this disease exists and so horribly angry that it took our Aunt. I'm still dealing with that. But Minnie my friend, you are a woman of great faith. You're also clear headed, informed and driven to find the best care possible. I fully believe that you can win over this beast. I know that God is watching over every step you take.

Cookey, you are a fantastic lady and I SO admire your character, your strength and your courage. You're going to help a lot of people through their struggle with your knowledge and kindness.
An unbeatable combination.

Brenda, you're strong. Take it one day at a time.

Hi Pam, I never spoke to you before but I am awfully sorry that you're in this spot again.

As far as Chemo and nausea go..... my Mom had eight rounds (was supposed to be nine but her bloodwork wouldn't support the ninth) of a triple cocktail Chemo for breast cancer. Platinum based, mixed with 5-FU and something else that I can't remember. They gave her Compazine, Ativan and a third thing. Most everyone else threw up but my Mom didn't. She came home from Chemo and I made her something to eat every time before she zoned out for three days straight. If one anti-nausea drug doesn't work for you, there are plenty more to try. Not everyone throws up. She absolutely did lose every last strand of hair on her beaner, but hair grows back.

Lastly........ ah crap, my husband's mother, Aunt Rosemary's sister, was diagnosed with three different types of cancer in June of 2006. She has SCC in the lymph nodes in her neck, lung cancer but they can't distinguish what type, and neither of those two are the primary. They hit her hard with Cisplatin and 5FU, three rounds megadosing all day infusions last Fall. She's been good since then, until now. She has a mass on her lung. They haven't biopsied yet so we don't know which cancer it is. Her doctor is unbelievably (the idiot) giving her megadoses of antibiotics to see if it's an infection. This line of treatment, this delay in finding out exactly what's going on- is beyond belief!! But my husband's mother is a very ignorant woman and believes that her doctor will tell her whatever it is she "needs" to know. I feel so bad for my dear husband who just keeps telling me that no one can tell his mother what to do.... I just know in my gut, that this is going to be bad. One day at a time.........

Hugs,
Lisa


Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
#66002 09-11-2007 03:23 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
I,too, am very glad to see this new board. Thank you Brian. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#66003 09-12-2007 02:17 AM
Joined: Jul 2005
Posts: 207
Platinum Member (200+ posts)
Offline
Platinum Member (200+ posts)

Joined: Jul 2005
Posts: 207
Minnie,

When i had my chemo three years ago, I never vomited once. The anti nausea meds they have no are very good. Also, make sure you take them as a preventative, not when you begin to feel sick. I have found that ttoo many of us take the anti nausea meds too late to be of great help. I took mine every day, whether I was having chemo or not. I found it helped.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#66004 09-12-2007 09:35 AM
Joined: Jan 2007
Posts: 97
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jan 2007
Posts: 97
Dear AngAk-
I'm on the same treatment. I can't speak for everyone but it has been fine so far. The chemo(once every 3 weeks) makes me tired for a few days and I feel a little nasueas but not too much. Then the Erbitux is once a week, the only side effects are that they give me benadryl before the infusion which makes you groggy for a few hours, and I have the rash/acne which most people get. The rash isn't too bad though, and the doctors keep an eye on it.
I had radiation back in February and that was much worse than this chemo/Erbitux has been.

Melissa


Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5