#29643 11-29-2007 01:58 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | Hi, can anyone please provide inforamtion/feedbaMy personal secreatary of 14 years, 59 years old, has jsut been diagnosed with stage 4 throat cancer.
She ignored symptoms for months and has lost considerable weight. The doctors are putting a feeding tube in her stomach next weight before she begins her treatment.
They also told her she would probably need a tracheotomy soon too.
The doctors have her receiving chemo and radiation for 6 months.
What is the realistic outcome/prognosis/effects from this disease and treatment?
Thanks fos sharing. | | |
#29644 11-29-2007 02:52 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Hi Arizona, and welcome to OCF! Sounds like she has a great boss! I hope she will join us here and share with us as her treatments begin.
The feeding tube is a good thing, in my opinion. Keep in mind that no two patients ever respond to treatment in the same ways. There are many here who really care, and will gladly answer any specific questions she may have regarding her treatment.
Is she scheduled for surgery now, or following the chemo/rad treatment?
Where will she be treating?
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#29645 11-29-2007 04:00 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | Hi, thanks for the response. She is not scheduled for surgey. the doctors want to wait and see how she repsnds to treament. The tumor is very, very large.
She is in Houston, Texas.
Can she survive this? We sure are keeping a positive attitude. Will she able to work or should we plan of hiring a temp? | | |
#29646 11-30-2007 02:12 AM | Joined: Jul 2007 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2007 Posts: 44 | One of the biggest blessings my son received while he was ill was the faith of his employer. He had only been working there a few months when he was diagnosed, was not eligible for FMLA, and was in a business that is very deadline oriented. It would have been easier (and far cheaper) for them to replace my son and move on.
They didn't choose to do that though. Instead, they talked with us to try to figure out a way to meet all of our needs. It happened that my daughter had just come home from college for summer break. While she wasn't as well trained or experienced as my son, she had many of the skills that were needed for his position. They hired her and allowed her to work whenever her brother wasn't able to, and my son was able to coach her through much of the work.
My son survived and recovered enough to return to work just as his sister went back to school.
The kindness my son's employer showed (and continues to show) our family meant more to us than I can explain. It was more than the financial ease of knowing his insurance would continue. It was the idea that there was a life still waiting for him -- the possibility that this awful thing would end and that he could pick up again where he left off.
I urge you to do the right thing. Talk to your secretary. Perhaps she knows someone (a friend, a relative) who is looking for temporary or part time work and would be a good fit for your organization. Keeping her job waiting for her could be just the motivation she needs to get through this.
And, from a purely business point of view, we tell everyone we know about the way my son's employer rose to the occasion. It's gained them at least a few new customers.
-darcy (Matt's Mom) | | |
#29647 11-30-2007 07:08 AM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | i have already assured her that NO ONE will replace her..NO ONE. She has been very uneasy about her job security and I have reasured her over and over that it will always be there.
She has been a long time dedicated, loyal employee and I am very old fashioned. Loyalty is everything to me and we will see her thru this to the recovery side.
I am hoping to gather information from this site to help her thru this. | | |
#29648 11-30-2007 12:02 PM | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2007 Posts: 163 | Arizona... bless your heart! Just wanted to let you know.. my husband had a stage 4 cancer and has fully recovered. Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
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#29649 12-01-2007 04:27 AM | Joined: Jul 2007 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2007 Posts: 44 | Awww, Arizona, you must be a great boss to work for!
darcy (Matt's Mom) | | |
#29650 12-01-2007 09:04 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | My cancer was advanced and I had 6 weeks of radiation (and ct) not 6 months -No one gets gets treated for 6 months. But it will take a month or recovery for every week of (radiation) treatment so maybe that's where you got those numbers. My doctor told me, very unscientifically, that "it is a matter of blind luck". Although it doesn't hurt to be seen and treated at a comprehensive cancer canter, which I hope she is going to MD Anderson - they are in the top 2.
I had a large tumor as well and it completely melted by the 3rd week of RT.
It was no walk in the park and she will need a support network, drivers, caregivers, etc. for a while anyway. Realistically about 4-6 months
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#29651 12-01-2007 09:44 AM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | Hi Gary,
thanks.. That was the type of information I needed. She is a wonderful person along with a great employee.
We want to be able to accommodate her and her needs with care and compassion.
They are insisting on a feeding tube for her next week before she starts treatment and most likely a traecheotomy soon after.
She has lost 30 plus pounds with the symptoms and she is now very thin.
Thanks for sharing and ifthere is anyone else out there who can add input please do so.
Thanks | | |
#29652 12-01-2007 10:08 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Arizona,
Does she have a family member or friend that can accompany her to her appointments? It's overwhelming to go through the treatment planning process. It took a month of appointments before my husband started treatment. How close is she to starting treatment?
My husband wasn't in any pain and was mentally alert. I wasn't the patient and was also able minded. However, the doctors appointments were daunting and exhausting for both of us.
There's a whole new terminology to learn for those who have not been exposed to radiation and chemo before. Plus, emotionally, it's tough to hear about what you may or may not experience in the upcoming months. So, the one thing I would say is to never go to an appointment alone if you don't have to...and, never go without a notebook and pen.
And, I hope you have invited her to join our forum. We're a pretty helpful, supportive group of people. I don't know how my husband and I would have gotten through the summer without the support of family, friends and this OCF board. Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#29653 12-01-2007 02:10 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Just so brilliantly put Margaret--you are a star and have been a support to me! Arizona--my job was advertised as a temp from jAN-july in October when I still had a week to go on my sick note--it gutted me--you are a STAR employer!
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!
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#29654 12-01-2007 03:38 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | Hi Mhupe and the srest..thanks for the feedback.. She has an 18 eyar old granddaughter coming in form out of state to drive her to her appts. etc. and basically tend to her needs.
I do not think the young girl knows waht this all entails.
I am hesitant about telling Ellen about this site for a couple of reasons. 1) She does not know I am on it asking information regarding her. 2) I do not know how she would respond to the facts. 3) I do not know if she is in denial right now and not fully facing the facts.
The good news..her PET scans came back clean with no sign of throat cancer having spread anywhere else.
Can anyone tell me how difficult it is to adjust to a feeding tube in the stomach. Will this be a big challenge for her?
I have also told her that she does not need to come to work once she begins chemo and radiation but she tells me that she 'will work half days' until all treatments are finished.
Is it safe to assume she will not be up to this?
Keep the comments coming folks..we're all in this together.
Thanks | | |
#29655 12-01-2007 04:25 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Everyone handles it all different , some have worked and some can't. I did not have the Peg , chemo or Rad . But from my experiences of what I have read , everyone is different .
She is lucky to have such a concerned boss. and You could let her know about the site and explain how you were worried and were trying to get more information on this disease and that you found this site and began talking to us and think that it may help her cope with all this. It is a group of people who have faced the same or similar circumstances ..and then she won't feel alone.
I know I had family and friends who wanted to be there, and I let them ...But there was a part of me that still felt alone as they didnt truly understand. and then I found this site and now I know I will NEVER be alone , not with the love and compassion of these people.
Shar
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#29656 12-03-2007 06:11 AM | Joined: May 2005 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2005 Posts: 31 | My husband worked half days through his treatment. After treatment he missed some days. His employer was NOT as nice. He was treated very poorly after he was done with treatment. They needed someone more dependable, he would have to call in sick some days. He had over 1500 hours of sick leave accumulated prior to his diagnosis and had 30 years in. To say it devasted him emotionally is an understatement. He still hasn't recovered from it. You are a wonderful employer and caring person. I know that having to go to work helped Bob through his treatment and I am sure it will help Ellen plus the fact she has job security. Linda
Husband diagnosed 2/9/05 SCC Larynx (piriform sinus)Stage IV,T4,N1,MO cisplatin/5FU 3/21-3/25 & 4/11-4/15, began 39 rad 4/21/05 last rad 6/17/05, mrnd 10/7/05
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#29657 12-04-2007 05:44 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | ARIZONA, You are asking some very good questions. And, coming here will help you become better informed. I had a very large tumor in the base of my tongue (too big to safely remove) and was Stage 4.
Chemotherapy tends to sap energy, strength, fluids and the ability to concentrate. Its different with every person, but these symptoms are very common. If she continued to work, even just a couple of hours per week, it might very well help maintain her spirits, give her focus and help keep her motivated. It is surprisingly easy to think about just sitting and doing nothing when the treatments get heavy. There was a period where I couldn't really read. I could see the words, but my short term memory was so impacted that I couldn't remember from one paragraph to the next what I was reading. I also lost feeling in my hands and feet. This made typing and writing pretty challenging (not to mention walking and balancing!!) But those symptoms are short lived. You may need to be pretty patient with her. She may not be completely aware of her limitations.
One of the worst parts of treatment is NOT KNOWING what is really happening. Fear is the mind killer and it makes every symptom much worse. This site could really benefit her. She needs to know what is happening. Cancer is darkness. Knowledge is light. The truth is scary, but not NEARLY so scary as uninformed fear and worry. Grandaughter could benefit too. Don't let that young woman get overwhelmed with this and wind up being your secretary's patient.
What we, here at OCF, have learned about cancer is that fear, hesitancy, reluctance, half measures, being overwhelmed, being too frightened to act - these are the real killers. Cancer can be beaten. Even really bad Stage 4 cancers can be beaten. But only by the active, well informed, assertive and well supported. She is WAY past time for denial. The music has already started and its time to get her a program. You can make a difference for her. We are here to help you, and her, and her grandaughter. Well done to you for being there, but its just starting. Come here often, Tom J
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#29658 12-04-2007 07:42 PM | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Arizona: I am responding to these: A) Can anyone tell me how difficult it is to adjust to a feeding tube in the stomach. Will this be a big challenge for her?
B) I have also told her that she does not need to come to work once she begins chemo and radiation but she tells me that she 'will work half days' until all treatments are finished.
To A. Generally it is not a great deal (simple procedure). I would definitely recommend it, it makes feeding and hydration so much easier if and when (more likely) you need it. Personally I hated the fact that I had one but was relieved that I had it.
B) this can be quite variable. Initially this should be possible, later on there will most likely be a time when it is not feasible at all. There are those who are really lucky... but do not count on it. In my case it was good to be able to do something and take the mind off the "pain" in the neck.
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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#29659 12-05-2007 03:13 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Arizona, My workplace was wonderful at supporting me through cancer treatment, giving me as much time off as I needed but also setting things up so that I could continue to work as I was able.
Even in the midst of the worst of my treatment I taught an online course for my college--but I have to say I was not a timely grader that semester. If I had to do it again, I would probably choose not to do that as it really wasn't all that fair to the students--my mind was so fuzzy at times from everything. Still at the time I really valued having some identity other than "cancer patient" to worry about once in a while!
If you can set things up so your secretary can contribute if she is able but won't need to do so if she is not able, that would be the ideal. Though easier said than done I know.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#29660 12-05-2007 02:07 PM | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2007 Posts: 71 | Dear Arizona, I have begun my treatments and I am very fatigued. My husband has been great and there right by my side every step of the way, he also has a great boss. As everyone will tell you every one reacts differently. I am unable to work due to the surgery and treatments and I also have a great boss that checks on me all the time. My best advise is that both of you agree to take it day by day. This web site has been a blessing to me. You will find great support here. Remember DAY BY DAY.
Take Care Tammy
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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#29661 12-05-2007 02:55 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Keep reading and keep asking questions...if and when she does 'open up' about her condition, you will be armed with more information than she will ever want to know!
Regarding the placement of a PEG tube...I can honestly state that in Buzz' case, he would have literally wasted away to nothing had he had had it to supplement his oral caloric intake. Even with it, he lost down to a little under 160 lbs and he is 5' 11" tall.
I've told Buzz over and over...the THREE most important points to remember are: hydration, nutrition and pain management...these have been the most important issues we've had to deal with.
Stay with us...we're all in this together!
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
| | | | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | Just wanted to say my friend Rod was diagnosed in March 04 with stage 4b throat cancer. He had chemo and 37 rad. treatments and now is doing GREAT. Had some depression and trouble with weight gain but now is pretty much his old self!!!
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | How in the world can he put on weight? Post his secret will ya?
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2007 Posts: 16 Member | Member Joined: Sep 2007 Posts: 16 | Arizona, compliments to you for standing behind your employee. My employer did the same for me, and it was a good, secure feeling to know that my job would be waiting for me when I was ready to go back to work. Your kindness to your employees will be rewarded.
Tom Alexander SCC Stage IV BOT, completed 35 Tx TOMO & 7 Tx chemo Taxol + Carboplatin 12/04/07. No surgery.
| | | | 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 Arizona, Good for you for caring! [My company has 9 employees and they are like family to me] If the granddaughter is the primary person responsible for caregiving, she will need some help and some coaching! ARe you up for that part? If so, keep researching here. DEpending on her tx schedule, I would not count on her to work much after the 1st few weeks [especially with rad tx]. If she has already lost weight, it is a good thing she will have a peg and for most folks, that is not a hard thing to deal with. What is hard is keeping up with medication schedules, amount of hydration and calories on a daily basis, etc. The person who is sick usually doesn't feel like doing this BUT someone has to or you end up in the ER. It is also very important to have a 2nd pair of ears at all Dr appointments as this progresses, to take notes,to ask questions and to make observations of how things are really going at home. I would be worried about an 18 yr old being able to handle this responsibility. Hope you will stay really involved and we are glad you are here. Amy in the Ozarks
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
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| | | | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | didnt put all of his weight back on but did finally gain using the VHC drink (i think from carnation). Also milkshakes and eating ice cream every night. Not the best nutrition but was very, very thin and needed some weight to look somewhat healthy.
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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