| Joined: May 2012 Posts: 4 Member | OP Member Joined: May 2012 Posts: 4 | Hi?..new here...well here goes...my husband was dx with salivary glad cancer 1 year ago. He had surgery removed the gland and 42 lymph nodes. He had radiation and chemo. He has been doing well until March when he started having pain in his left hip. After labs, bone scan and full body CT scan and bone biopsy we just found out yesterday that he has bone metastasis to the left femur. We are devastated and scared and worried. I just found this site and think it is time for me and possibly him to get support. We see his oncologist next Wednesday. He is researching if he is elidgable for a clinical trial and it looks like no matter what we are back to chemo this coming month and I am trying to collect as much valid information as I possibly can to help him and I through this. Running scared.
Last edited by JanetA; 05-25-2012 09:22 AM.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Janet welcome to our forum - but sorry that you have to be here. I am not familiar with your husband's type of cancer - but just wanted to send vitual hugs at this trying time. Your location should be pretty convenient for clinical trials / treatment. There is a lot of good research going on, and I hope that your husband will benefit from it. Will be thinking of you over the long weekend. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: May 2012 Posts: 4 Member | OP Member Joined: May 2012 Posts: 4 | Maria...Thank you for the hugs. Ithinki need them more than Jim does. Regarding the clinical trials...I know we are in a good area. Supposedly one of the nurses will be in touch with us today to begin the process to see if he qualifies. Sometimes it is hard to remember to breath and not expect the worse. | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Have you done any yoga or meditation? I found that the breathing exercises helped me a lot to stay calmer and do what needed to be done.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | Hi Janet! So sorry you and your husband are going through this. Having been a caregiver myself, I am familiar with the feelings you are having right now. You are in the right place though, everyone here is amazing and will help in any way possible. This is certainly the place for you and your husband to find all the information and support you need. Hang in there and definitely let us know how things go!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi Janet, I'm so sorry you guys are going through this. I think it is all of our worst nightmare! Hopefully he will be ok for a trial. Will be thinking of you and praying for some peace. Please keep in touch with us. Just curious, was his primary cancer HPV+? Blessings, Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Hello, Janet. I'm also not familiar with this type of cancer, but I'm so sorry you are going through this. �fter going through the stress of chemo and radiation, to be hit with a recurrance is so unfair. I suppose you have to think back on how you coped with the first lot of treatment and try to do the same. Bit by bit, hour by hour, day by day. When my brother was in treatment, I couldn't think too far ahead. If he had a good result or reaction at any point in the treatment, we were glad of it, and if he had a set-back, rough days because of the treatment, then we thought and researched about the issue (indigestion, nausea etc etc etc etc) as if it was the only problem he had. It kept me sane, otherwise I'd have been sick with worry the whole time. My mum would say "don't borrow sorrow from tomorrow". I wish you the very best and will be following your's and hubby's progress.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: May 2012 Posts: 4 Member | OP Member Joined: May 2012 Posts: 4 | I am not sure want HPV+ means. Can you define that? A year ago he found a small bump behind his ear. In three weeks it grew to 2.5 cm and was surgically removed. It was a tumor of the left salivary or parotid gland. They found local mets to 9 of 42 lymph nodes that were removed. It was a squamous cell carcinoma. It was treated with rads and chemo. And until March he was doing terrific. Now it has metastasized to the ball of the left femur. We see his oncologist next Wednesday. He wants to enter him in a clinical trial if he qualifies, I think we will know this by Wednesday. Otherwise he will be in for a long summer of chemo. Thank you for your support. It helps. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | HPV Positive would mean that the origin of the disease was from the human papilloma virus number 16, but with a salivary gland tumor that isn't likely. I don't think I have ever seen one reported in the literature. At this stage of things, what caused it, I am sure is really academic in your minds right now.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2012 Posts: 4 Member | OP Member Joined: May 2012 Posts: 4 | Well the causes are listed as environmental, exposure to dental x-rays, smoking or chewing tobacco. Except for dental x-rays over the years i thought none of them applied to Jim until I thought about his dad. His father was a heavy smoker for years and I wonder about second hand smoke. But as you say this is all academic now. | | |
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