Hello everyone,

I have lurked here off and on. The site has been helpful since I found it. My partner was diagnosed with SCC Stage IV OC. It had spread to the lymph nodes as well. After some pretty aggressive treatment, it does not look like we are going to be one of the luck ones.

Right now the tumor has come through the neck. The smell is pretty intense. Any suggestions? Also, is this any indication of where we are in the process? Does it indicate that we may be close to the end.

The only options we have right now are a clinical trial which she will start hopefully tomorrow.

I feel like we are walking in two worlds...

Hi JustJan,

Welcome to the site. You have come to the best place on the net for info.

My fathers tumor broke though his neck as well (it oozed a clear and bloody discharge) and I know what you mean about the smell. Mom found herself changing the dressing several times a day (about every two hours) to help with that. I've heard of others on here putting kitty litter in the room where they are to absorb the odor as well as using "stick ups" in the rooms to mask the smell. I'm not sure how well the other two options worked, but I'm sure someone here will chime in soon.

Hang in there and keep coming back.

Joy

My husband's tumor has also broken through and has bleeding and discharge also. The nurse had told us about sprays that can help but they are by prescription and they have to show you how to use them so that's something you might want to check out. My husband is now on Taxol and after the first infusion the tumor has turned into a crater. This, according to his doctor, could be good or bad. We don't know yet how bad it is under the surface as he will have scans in two weeks. He does believe however that it is good because his lungs sound good. He has mets to the lungs so if the tumor was in fact getting worse he would have heard a worsening in the lungs. Just when I thought all hope was lost we got a bit of a break. I really know how hard it is to keep the faith but sometimes that's all we have. Good luck with the trial and please keep us posted.

Sue

Hi JustJan,

Don't have much advice about your partner's current situation but my heart goes out to both of you as you struggle with this disease. I hope you both have lots of support from friends and family. Glad you found your way here where support is available 24/7 and everyone is always willing to lend an ear and share their experiences.

Susan

Don't laugh, but I was terrified that no one would respond. So thanks for all of the responses.

Well, today's the day. We go see the oncologist. I also have to call her boss to let him know that she won't be coming to work and may not be going back. My fear is that she will lose her life and health insurance, though her short and long term disability is through the agency that she works for.

The pain meds aren't cutting it, so we will have to talk about that today. We really need to ask the onocologist some serious questions today. We know that the clinical trial is a shot in the dark, but we need to talk about what it may look like for her if it doesn't work.

Thanks again for all of the responses!

Keep us all posted after you meet with the doctor and lets hope he brings some good news.

Only good thoughts are going with you today...I agreee lets hope the appointment gives you some good news and something to hang on to..

Dianne

fingers crossed and will be waiting for good news.

Praying for you and your sweetie to have some positive news.

KATE

My thoughts are with you...hope the clinical trial does the trick and the news is good. We are with you in spirit.

You have all of my best and prayers. Check out COBRA for the Ins. It's a law where the Ins has to keep you on as long as you can foot the bill.

Thanks again for all of the warm wishes!

The news isn't great, yet not surprising. We are hoping/praying for a miracle with the clinical trial. It's only Phase II, so we really don't have any idea how effective it might be. The good news is that the tumors are growing so quickly that we might be able to tell in a week or two if it is working or not. The bad news is that the tumors are growing quickly. The doctor let us know last night that we might be looking at 6mos or less.

research ways to boost the immune system which may well help the clinical trial to work better and faster. of course always consult with the doctors on measures you wish to take, but it is her body and she can choose to do as she wishes. supplementals have been shown to really boost the effectiveness of many treatments yet some doctors still refuse to admit / recognize how helpful they can be ... the nice thing is many have seen the results now for themselves and embrace it... so research it all and talk to them and see what can be done to make the most of it. best wishes to you and your partner. i am sure this is a very hard time and nothing makes much sense right now. hang in there and let us know what we can do to help in any way we can.

I know how you must be feeling about now, having been in a similar position less than a year ago. My heart goes out to both of you. Hopefully this clinical trial will buy some time and quality of life for your partner and also you.
You should also make connections with a hospice program so that when the need arises they will be ready to assist you. Maybe this is already in place through your cancer treatment centre. Hospice does a wonderful job with symptom control and emotional support and all the little things that make such a big difference for patient and family dealing with a life threatening illness.
Were you able to get some better pain management and wound care guidance for the neck tumour when you saw the doctors?
Wishing you strength and courage to face the challenging days ahead.

the odour problem with tumours that break through the skin ,has been debated on here many times,and is unfortunately one which never seems to really have a definitive answer.Robs smelt so badly that when he went in to the hospice ,it permeated the whople place.they placed an electronic air purifier outside his door,and a small one with lavender oil under his bed..they also packed his face with charcoal ,which absorbs the odour.the biggest danger with break through,is erosion of the major arteries which can heamorrhage and cause a real medical emergency.

Make sure you speak to a practioner about putting emergency procedures in to place in case of this eventuality.

i wish you luck with the trial..

Liz

Thanks for the advice. In terms of pain management, they are upping the fentnyl patch, increased frequency of oxycodone (every 3 hours), and starting a new pain medication that addresses nerve pain (for both nueropathy and neck pain). We are going to try these and see if they work.

I'll be getting them filled today.

Hi I am curious to know what med is used for nueropathy and nerve pain as both my husband and I have severe damage due to diabeties...this effects both feet and hands...

Thanks

Dianne

I am getting it filled today, so this is just what I can make out from the doctor's script. It looks like Pregabalin? 75mg. I haven't had a chance to look it up online yet. There is also a neuropathy board and someone there mentioned a patch that goes on the feet. I'll see if I can find that again for you.

It is Pregabalin. Apparently it's the generic name for Lyrica.

Thank you but I don't think that is covered under our plan in Canada...Does it work or you don't know yet...I really need something that works... We were given a trial sample of that drug a while back but only 14 days worth and didn't want to start it in case we couldn't get more but if it works it might be something to try to fight for...

I feel so bad for the 2 of you. I just don't have any answers or wisdom to pass on, just want to wish you 2 the very best and the usual take it one day at a time. I sure hope they get you some good pain meds.

[quote=darkeyedlady0]Thank you but I don't think that is covered under our plan in Canada...Does it work or you don't know yet...I really need something that works... We were given a trial sample of that drug a while back but only 14 days worth and didn't want to start it in case we couldn't get more but if it works it might be something to try to fight for... [/quote]

I hope you find something. I know for us, right now, pain management is at the top of the list. I don't know if it works yet, but I'll let you know when we get it. I tried to get it filled last night but the doctor apparently has to call the insurance company. So now I need to call the doctor and get them to call the insurance company.