| | Joined: Dec 2010 Posts: 2 Member | OP  Member
Joined: Dec 2010 Posts: 2 | I apologize in advance for this long introduction. I am new to post, but definitely not new to this forum. I have been reading people's stories for the past 6 mos and have learned so much! I can't explain everything in doctor terms, but can do my best from what i have gathered. I am caregiver to brother in law Gary, age 35. Pittsburgh, Pennsylvania Wife- has to be back where they live to work, Washington State (miles apart from wife is one obstacle) DX 2006 with SCC on R Cheek, Surgery then radiation. Feb 2010 recurrence, 9 hour surgery to remove tumor, some bone shaved from Jaw. Recovers enough to be able to go back home to Washington. April 2010- New tumor appears at corner right above lip. Another surgery to remove tumor, then radiation and chemo all summer. He did so well over the summer. Stayed active, walked the dog, enjoyed time with my husband. August 2010 went back home to Washington after he completed treatment. Nov 2010- Back AGAIN! 23 Hour surgery to remove left side of jaw, bone from leg to replace jaw. Free Flap. One week later, had to have new bone removed due to complication. (numerous lymph-nodes removed, a couple cancerous) He came home with us to start recovering, seemed to be doing ok, but then WHAM...TUMORS started showing up almost daily on his face and neck. These are visible tumors, some that bleed. Doctors this time says he's terminal, there is nothing more to do. They started him on Carboplatin, Erbitux and 5FU to try and slow it down a little. Starts Radiation today to try and shrink HUGE tumor above collar bone for pain relief. So far, no metastasis to lungs. Is it only a matter of time? If they gave him a time frame, he hasn't told us. We are sooo devastated as this is happening so fast. Is he really dying at our house. So sad. | | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | Oh my Kroth, I am really feeling for you but have no words other then I will be praying for you and your family. It is sad and so young. God bless you all.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Dec 2010 Posts: 2 Member | | OP Member
Joined: Dec 2010 Posts: 2 | Much appreciated Bonnie, I too will pray for your daughter and family. | | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 |
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Oh how awful.....I am so sorry....sending lots of prayers for your family.
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Kroth:
This is such sad news - you all certainy have my prayers and I will keep checking in on you. Your brother-in-law is really lucky to have such a caring person caring for him. I know your sister must be devastated not to be able to be with him.
I pray he can get some relief and will keep praying for him, along with all the other caring members on the Forum.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | You and your family are in my prayers! I am so sorry to hear this, so terribly sad.
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Kroth, welcome to OCF. I am so sorry to read of your brother in laws ongoing illnesses. I really hate reading such sad stories of people who just cant seem to get a break. Poor guy! He is so young. He doesnt even get a chance to get well and it keeps coming back. Oral cancer is very fast moving, your brother in law is proof of how quickly it can grow. You are wonderful to take care of him, thats what families are for. Sadly not everyone has good people like yourself as relatives to help them when they it.
This may be a silly question and I apologize in advance. Have you considered taking him to a large cancer center for a second opinion? From your post I understand that his health has declined and there are so few options for an oral cancer patient. If it was me as the patient, I would want that done for me. Thats why I mentioned it. Again, Im sorry if this suggestion is ridiculous.
Another avenue to go for help is hospice. From what I have heard, they will make sure he is comfortable and help you to help him. Ive heard so many glowing reports attesting to how compassionate the hospice people are.
Hope today is an ok day for you. Take it one day at a time. I will add your family to my prayers.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | Kroth,
Words can't say how sorry I am to hear about Gary. It is so unfair to go through all that treatment and still be given that kind of news. My prayers and thoughts are with you and your faimly.
Deb
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Kroth and welcome to the forum. I'm so sorry to hear about your brother in law...how sad and he is so young which makes it worse. You and your husband are so kind to care for him. It is stressful, I'm sure.
Where is he being treated? I do agree with Christine, is a second opinion something you can do? Again, you may have already done this but I had 3 opinions until I felt comfortable with my treatment.
Please keep is posted..I am thinking of you and your family.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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