#4799 01-15-2005 06:00 PM | Joined: Jan 2005 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2005 Posts: 56 | Hello All: this is the first time I've visited this site. I'm very impressed with the interaction I'm seeing, so I'm going to ask for some input.....and I'm not very good at asking people for help.....but HELP!
My wonderful husband was dx'd with base of tongue cancer, T4A in December. He began treatment this week. He will have radiation (43 to complete) and chemo (3 total), no surgery. He saw 5 doctors from Feb 2004 until it was finally dx'd in December when he was 2 days away from brain surgery.....THAT would have been from the previous misdiagnosis. Anyway, we are very close, and I am so frightened. He is just so very weak and tired.....I can't believe how fast that happened. He has been in pain and on narcotics since Feb '04, but the treatments are really difficult. Any info anyone can provide would be helpful. Thanks, Michelle
Michelle
| | |
#4800 01-15-2005 06:15 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Welcome Michelle, there are friends here for you to lean on. If you take a look at some of the earlier posts (or search button) you will find a lot of answers for you. Feel free to ask specific questions.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | |
#4801 01-15-2005 06:30 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2004 Posts: 104 | Hello Michelle,
Welcome to OCF. Sorry that You had to find us but am glad that You have. Sounds like Your husband and You have definetly gone through some hell in the past year. Like Mark says, don't hesitate to ask specific questions here and read all You can. We are all here to help each other out in any way that we can. Sending out the positive vibes Your way.
Peace Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#4802 01-15-2005 06:38 PM | Joined: Jan 2005 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2005 Posts: 56 | Thanks Mark/Jack: there is alot of great info out here. I'm glad I found this site. I wish I could get Dan (husband) to check out some of the survivor stories here. No interest. He had the first week of radiation this past week....5 rad and 1 chemo. He is having such a terrible time with thick mucous.....any suggestions?
Michelle
| | |
#4803 01-15-2005 07:08 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Michelle, and welcome to the forum. It is a gift to us to be able to help you in any way we can. Most of have had similar issues, pain, narcotics meds, fatigue, weight loss, nausea, etc. Not to mention misdiagnosis. Chemo and radiation only are a quite common treatment of choice for base of tongue cancers. Radiation is no walk in the park but many here have survived and gone on to normal, productive and somewhat enriched lives as a result of the experience.
This is the scariest time.
It is not shameful to ask for some meds for yourself to cope with the anxiety. Sometimes the local cancer society can provide people to talk with you one on one. Ask the hospital social worker as well about support groups and financial help. Since this is a multinational group there bis usually always someone up late to answer questions for you.
We do recommend strongly that you are seeking treatment at a comprehensive cancer center. There are links to the NCI and NCCN comprehensive cancer centers in the resources section here.
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)
| | |
#4804 01-15-2005 07:37 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Michelle, I'm sure other people will give you some suggestions for coping with the thick mucous, but the first thing that comes to my mind is advice that I received from Joanna, another OCF member. Roll up some gauze squares (4x4" ones work well, but any gauze will do) and have Dan put them in the gutter between his teeth and cheeks. The gauze will soak up a lot of the mucous. This works especially well at night, allowing one to sleep longer before having to spit or wipe out the mucous. As for wiping out the mucous, Puffs brand tissues are strong enough to do the job, but are soft enough to not irritate. Since Dan is in a weakened state, I think he would be helped by having a suction machine similar to the ones dentists use. If the doctor writes an order for one, many insurance companies will pay for it. We rented a portable Yankeuer (sp?) from a medical supply company. It was a huge help. Sleeping with the head elevated can help, too. Many OCF members have slept in a recliner for weeks and even months during and after treatment. Having sufficient moisture in the air is also important. Running a humidifier can be a great help in keeping the mucous thinned out. Rainbows & hugs, Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | |
#4805 01-16-2005 04:35 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Michele, welcome to the site. Sorry you had to find us. It would help if we had more information about your husbands tumor. What stage it is, where it is located, where he is being treated, his blood status (ie, white and red blood cell count and other stats), and any other details would help us help you. Meanwhile, you are both in my prayers.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
| | |
#4806 01-17-2005 08:24 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Michelle,
Welcome to the neighborhood! I can certainly relate to Dan not wanting to come to this site right now. I am sure his head is still reeling from all the doctor visits and the whisking into the start of treatment once everyone agreed what he is facing. It sounds like your wonderful husband has a wonderful wife by his side. That in itself is certainly a great thing. He is very fortunate to have you and your love during this rough time.
Make sure you take time for yourself so you can recharge and be all you want to be for Dan. Also, make sure Dan is taking in plenty of liquids either orally, intravenously or through the PEG tube if he has one. The side effects are much easier if the body remains hydrated.
Arm yourself with as much information as possible so you can help maneuver Dan through the maze ahead.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | |
#4807 01-17-2005 03:19 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Michelle: Incompetence is what you have had to deal with, it is absolutely atrocious that this man has been misdiagnosed and left to suffer for so long. Unfortunately, he has some miserable days to look forward to soon. Either consult with a Gastro Doc and have he/she wait in the wings or just go ahead and get a PEG tube. But , don't be fooled a PEG will be required soon into treatment. As you will notice, my tumor was almost a carbon copy of your huusbands. I had no surgery either. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
| | |
#4808 01-18-2005 03:17 AM | Joined: Jan 2005 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2005 Posts: 56 | Hi Kirk: I'm not very OCF site/forum savvy yet, so I hope you receive this. Sorry I didn't provide enough information. Dan is stage T4A, base of tongue, left side, with 2 nodes involved. He is being treated at the NC Cancer Center at the University of North Carolina in Chapel Hill. He was diagnosed at University of Pittsburgh Medical Center. I don't have the stats right here on the blood work, but I will forward them asap. Thanks again......the people here are wonderful! I'm so glad that I was able to find you! Thanks to all.
Michelle
| | |
Forums23 Topics18,170 Posts196,933 Members13,105 | Most Online458 Jan 16th, 2020 | | | |