Oral Cancer Foundation
Posted By: JanetA New here and worried - 05-25-2012 04:14 PM
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.
Posted By: Maria Re: New here and worried - 05-25-2012 04:57 PM
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
Posted By: JanetA Re: New here and worried - 05-25-2012 08:13 PM
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.
Posted By: Maria Re: New here and worried - 05-25-2012 08:47 PM
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.
Posted By: aimlee311 Re: New here and worried - 05-25-2012 09:15 PM
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!
Posted By: KP5 Re: New here and worried - 05-26-2012 12:33 AM
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
Posted By: samkl Re: New here and worried - 05-26-2012 03:41 AM
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.

Posted By: JanetA Re: New here and worried - 05-26-2012 01:45 PM
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.
Posted By: Brian Hill Re: New here and worried - 05-26-2012 01:55 PM
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.
Posted By: JanetA Re: New here and worried - 05-26-2012 02:07 PM
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.
Posted By: Cheryld Re: New here and worried - 05-27-2012 03:09 AM
Dope fully the trial will do what needs to be done... Hugs to you, I know it's so hard to face this again.
Posted By: Kerri Re: New here and worried - 05-27-2012 05:05 AM
Janet,

I am so sorry that you and your spouse are going through this. Is the only met to the head of the femur? If so, did the doctor say a total hip replacement might be an option? I'm just wondering. In a total hip replacement, they remove the head and femoral neck and replace the ball/socket with titanium and plastic components. I have no idea if this has ever been done or if it makes sense. It might just be a question to ask his doctor.

I'll be thinking of you both and wishing for some good news soon.

With care,
Kerri
Posted By: davidcpa Re: New here and worried - 05-27-2012 02:43 PM
Good luck in whatever treatment you decide to do.
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