| | Joined: Mar 2011 Posts: 26 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 26 | My husband finished treatment in may and had a pet scan/biopsy in June. Within six weeks of ending treatment, they found bone mets in his pelvis and femur. He is now on a different chemo protocol to treat this metastasis. I have not been able to find one other person who has had recurrence to bone so, I am searching for someone. Anybody there?
Robinleigh (caregiver)
Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Robinleigh:
Just wanted to let you know your message is being seen and others who know more about your problem will be joining in soon, I know. You didn't say where his original cancer was. I assume it was head/neck or you wouldn't be on this Forum. There are so many members, I am sure someone will answer soon. Hang in there and you'll see. You're one of the first members I've seen since I joined the Forum who is from Alabama. What part? I am from Huntsville.
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: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Hi Robinleigh,
You would need to post details about the original cancer and the treatment that your husband got. For Squamous Cell Carcinoma of Head and Neck (SCCHN), mets to pelvis and femur bones is a distant event and has a low frequency (loco-regional mets and recurrence are more common). And, this is reason why you are not finding any other person or details.
Has the bone been biopsy been done? Considering bone mets, your husband needs immediate medical attention and do discuss possibility of surgery with his doctors. I hope he is undergoing treatment at a reputed CCC.
Hope to hear from you to be able to guide you.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Mar 2011 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 26 | Sorry I wasn't more specific. A little history...My husband, Andy diagnosed in Feb. 2011 with SCC of tonsil and base of tongue. Treatment at Mayo clinic to remove tumors (clear margins) and neck dissection with removal of 70 lymph nodes of which 14 tested positive. Completed 3 cycles of Cisplatin concurrent with IMRT radiation. Returned after 6 wks. for pet scan which found bone mets. The pelvis was biopsied to confirm SCC. In treatment now for recurrence. Receiving carboplatin, Erbitux, and 5 F U. Apologize for not knowing all of the abbreviations. Will try to learn them! Appreciate any feedback very much. I just can't seem to find anyone with bone metastasis. BTW...Montgomery, Alabama
Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Welcome! I wish I could be more helpful... But I'm not sure about the mets though I do believe I recall reading about one other person here with bone mets! ( to the pelvis ) I think it was his caregiver who posted for him. I only remember it because I too thought it unusual... There is also another woman who isn't here right now - she had a similar situation. - 20 + nodes - and it had moved into her skin. They gave her chemo, then rads and more chemo, now it's in her vertebrae - 3 - they are operating soon to remove the affected vertebrae and then plan to hit her With more rads and chemo. She scared but doing ok... I'm sure someone here will be able to connect with you. Hugs and prayers to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 | I have had my first round of cancer being located in 2 seperate places at the same time. The first spot was inside my left cheek then another seperate spot appeared behind my top left molar. The second time I had cancer was a tiny spot almost the same place as the first time on the inside of my cheek. Now the third round was the one where the cancer was in my jaw bone. It was found by a biopsy on my lower left gum line but the PET/CT scan showed cancer in the jawbone. Not sure if this helps you or not.
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: Mar 2011 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 26 | Very happy you are alive too...you have had your share and I hope that is it for you. I just think my husband's metastasis is so odd because it is so distant and others seem to be closer to the head and neck region. Guess we are all unique. I just pray he new chemo regimen is effective. Thanks for feedback!
Robinleigh
Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes fingers crossed everything goes well. One thing this has taught ne is never say never... That works on both ends of the spectrum. A t1 requires just as much respect as a t4 - and someone who appears to have no hope - can ultimately become a miracle! prayers to you and your hubby!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Robbin,
I was caregive to my husband, Jim. He had finished his treatment as well when it was found in his femur, pelvis. Radiation Theraphy helped quite a bit as we were encouraged to do this when the pain go too much. I felt that it was much better and gave him much more quality of life than all the different chemo cocktails that are out there. I found it ironic that when we went to see the Dr. about the pain, that we went into a new examination room and they had a small skeletal system with red dots on it. Our Dr. said that this was a path that SCC often times takes. Please feel free to send me a private message if you want more details.
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: Jul 2011 Posts: 131 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | Geez... its just so unfair
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
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