| | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula- Neil's doctor is on vacation this week but he said to call the office and make sure they fax him the results at home which I did this morning. I hope he calls back fairly soon as we have two graduations this week and we are going to the beach next week on vacation. If this Taxotere has not been working they of course won't be giving him a treatment this week and maybe he'll feel ok for vacation. If it has been working they will keep him on it at a reduced dose to help with the side effects. Either way I'm not sure if he will get chemo before we leave. I would like him to feel halfway decent as I really have a feeling this may be our last family vacation. Our daughter is going away to college in August and this whole summer is going to be very emotional for all of us. We're not asking for much, just some surf fishing and good weather!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Sue, I hope you are able to have a vacation together and enjoy something every day. My heart is with you as well. It is a very hard road we travel......
Paula, you are on my mind also......
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Thanks Linda...Jim has been in a very bad mood this week; he had chemo today so I guess we are going to spiral down for the next 4 days....I'm weary from it all and people at my office are telling me that I look very tired...and you know what? I am! But, I'm hanging in there as if Jim can fight this fight, then I know that I'm up to it as well.
Sue - try and have fun on your vacation...I want one of those to, but Jim just isn't up to it. His parents want to take us somewhere in August, but I feel that he may not be up to it then...but I'm holding my faith that he will be!
Hugs to everyone...Hi Liz!!!
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi yoursef.Nice to see you posting
xxxxx((((( liz)))))
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.
| | | | | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Dear Paula, you've gotten some really helpful information in the last few weeks from this group [and I know Sue is struggling with the many of the same questions] and I want to share some thoughts with you. You are NOT GIVING UP on anything by requesting hospice. IN FACT, you will be doing Jim, yourself and your family a great service. Whether it's in home care or at a facility, there will be professionals available to ease the pain and fatigue for all of you. One of the most echoed themes on OCF is "how differently we all react to this disease, the tx. and the outcome". That is soo true. Liz [a nurse] was terrified that her Robin might die at home. I [an old English teacher] promised John that he could die at home. But both of us got greatly needed support from hospice. So much of what you are going through is still very clear in my mind and my heart goes out to you. AND you need to have strong, professional people around you to keep you grounded while dealing with this- for your sake and Jim's. 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
:
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Amy
lovely to see you back
love liz
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.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Ditto, Amy.....It's great to know that you are still "in the neighborhood." I hope all is going ok with you. Thanks for checking in! xo--Colleen
Last edited by August; 06-29-2008 09:25 PM.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Hi Everyone,
Just a quick update - Jim is feeling lousy, but we are making some progress on the remodeling of the house. Jim has developed a slight cough and tries to hide the pain from his face. I contacted MD Anderson in Houston and went over everything with their Dr.'s and they told me that they couldn't do anything for him that isn't already being done. I was heart-broken and I haven't told Jim yet. He wanted me to pursue this avenue, which I did, but will wait until he asks me what I found out. I do have all of the Hospice numbers to make contact with, but not going to do anything at this time. Jim has been very short with me the last few days, but I know it's because of his pain level - I am walking on eggshells around here.
Amy - it's so good to hear from you and see that you are hanging in there with us. A special thank you to Liz for all of her deep wisdom and understanding of a soul wretched in pain.
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Paula,
I'm certainly not the expert but judging from what others have said after going thru what you and Jim are facing you really need to get his pain under control and apparently it's doable. Wish I could help.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Well today has been a roller coaster ride to say the least! I got up this am and got into the shower...half-way thru, Jim said he needed the bathroom, which I replied, well come on in...I'm in the shower...he wouldn't have it. I jumped out, shampoo and all in my hair. We only have one bathroom in this house - when he came out, he lost it....he fell into bed and started to cry - he said that he couldn't fake it anymore and that he couldn't take the pain anymore and that the process of dying had started - he could feel it. I told him that this was just because he hadn't had any pain medicine for 8 hrs. and that he would be fine...he told me to brace for reality. I gave him his medicines and he proceeded to put that damn prosthesis on (which weighs at least 20 #'s) and I can hear every groan that he makes when he starts pulling the suction up and lacing it....I went to work (which he made me do) and he went off to check on the framers that are remodeling our home. When I got to work I called all of his Dr.'s to which they of course wanted to see him...I left work at noon, went to pick him up and proceeded to the radiation and the oncologist (whom I cannot stand). Bottom line - they gave us a script for 100 mg. of oxycotin and more breakthrough pain medication. I'm a wreck - JIm is very frustrated - his nurse even told me that he looked really bad - - - well, duh! The man is in excrutiating pain and I feel totally helpless! So, I just gave him his meds and hopefully this will help.
Thank you Brian for this board....I don't know where I would be without being able to talk to someone about this....
Liz - where are you?
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
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