What can we expect?

[cancer mom]

My 42 year old daughter had a malignant mole (stage I) removed in January. Three months later she found a lump in her armpit and was diagnosed w/ Stage 3b melanoma. She had multiple nodes removed, but no melanoma was found in any other than the original one, and her PET scan didn't show any further metastasis. Now 4 months later her PET scan shows that she has upwards of 20 tumors throughout her body, several of which we can feel. She has lost her appetitie, tires easily and is in a fair amount of pain.

Although one of the drs. she has spoken to says we should still be looking for a cure rather than just maintenance, she seems to be deteriorating at a rapid pace, and we just aren't sure she'll make it through treatment.

I consider myself to be a srong person who is going to be able to be a great support for her, but I do better if I know what to expect. I don't functionally understand exactly HOW cancer kills you...I can see the tumors, but what is it that does the killing? And how does the disease progress?

Is there anyone out there who has lost someone close to them from this disease that can give me some particulars? I hate to take up the drs. time w/ hypothetical questions like these, but I'll be better able to support her if I know what we are facing...Thank you!

[sodapop]

Cancermom, I really don't know how or if I should begin to answer your question. The dr. is there to answer these questions, I'm sure he/she wouldn't mind at all.

Although I pretty sure there isn't a cure, that doesn't mean that miracles can't happen.

You say you can see the tumours? I have dozens and I can't see or feel any of them. Where are the tumours at?

What we can do is take the reccommended treatments---Chemo, Radiation, IL-2, Gamma Knife, Surgery---and keep our faith in God. He says when we will go and only him.

I will keep your daughter in my thoughts and prayers every night.

This is a beast of a disease and we have to be strong.

Keep us updated on what's going on. Maybe someone on here can answer your questions better than I did. I apologize for not being able to help much.

Take care,

[cancer mom]

Thanks for your reply Sodapop...I knew it was a weird request, but in my research on the internet, I can't find anything, and I don't want to ask these questions of the dr. in front of her.

As far as she knows, we are expecting a cure, and really, I DO believe in miracles, the power of people to cure themselves, and God's ability to do anything He wants...I just can't help but go to the dark places from time to time. I find that for me, if I figure out what the worst thing that can happen is, and figure out a plan for dealing with it, I can face anything...we all deal differently, and this is what works for me. I guess that may seem a little pessimistic, but it really isn't. I'm a very optomistic person...but I'm also a planner. AND, although I know I can't control this stinking awful disease, I CAN control how I react to it, and I have to know what to expect in order to do that...hope it makes sense.

The largest of my daughter's tumors in her neck, just above her collar bone. It is about the size of a walnut and you can actually see it's profile in her neck. The others that we can feel are in her back and groin. She hasn't got an ounce of fat on her, so it is pretty easy to feel them. They match up perfectly w/ the black spots on her PET scan....pretty scary.

Her dr. had a cancellation for tomorrow night, so they are getting her in almost a full week sooner than we thought...

Anyway, thanks for your story. I love that you are fighting so hard, and meeting w/ some success. We'll be praying for you, as well...

[sodapop]

Nothing wrong with the way you're dealing with it. Kind of the way I attacked it as well.

I also have a tumor in my lower neck region and my lower back. Do they give her pain? My lower back hurts sometimes but not the neck one.

Have they mentioned anything about surgery to remove the resectable tumours? I wish I could but unfortunately he told me it wasn't an option.

Stay in touch. Let us know how it goes on the next visit.

Good luck! Let's fight these aliens together and see what happens, that's all we can dol.

[cancer mom]

Well, we had a crazy day. My daughter got in to see her dr. Thusday night instead of having to wait until next Wednesday. He confirmed what we knew already, that she has "enumerable" tumors throughout her body, including lungs and liver. But, rather than shipping her home to die, made arrangements for her to begin a comprehensive 5 day in the hospital chemo session, followed by 2 weeks recovery and then back in for 5 days, etc.

She went in Friday morning, started testing, got her pic installed, and was excited to get going when we got some terrible news. Her MRI showed multiple tumors in her brain. So, they removed the pic and sent her home w/ oral Temodor and she'll begin WBRT on Tuesday.

Her spirits are still good. She has decided that her progression of this disease has been so weird, that maybe they'll stumble on some weird combination that works on it...she's something else.

The dr. didn't go into what comes next, what happens if this doesn't work, etc. And I understand his rationalle...he needs her to fight, not give up. So, for now we're going w/ that...

Thanks for listening...

[sodapop]

Cancermom, thanks for the update. I'm sorry that your daughter has to go through this. That's exactly what they told me,"enumerous tumors in the lungs".

Not that it matters, but when you said he wanted to do the 5 days in the hospital and 2 weeks out of the hospital chemo routine, are you sure he didn't say Interleukin 2 treatment. That's what they usually do with that kind of schedule, or at least for me that's how it was.

Can you share with us what WBRT is? Did they mention the Gamma knife radiation treatment? Maybe not because of the multiple lesions in the breain but I'm not sure how that works. That worked really well with the tumor in my brain but the IL-2 treatments I went thru didn't do a thing exept let the tumors grow during my stay at the hospital.

At least she seems positive and you're right maybe they will find a combo that works. The combo they chose for me is working at the moment--Paclitaxel combined with Carboplatin, so just keep up the positive attitude.

Sorry for babbling but this really gets my attention because it's so related to myself.

Keep us updated and keep fighting.

[brainman]

cancer mom, I am very sorry about your daughter's cancer and how far and fast is has metastasized. It does seem like the doctor's are treating her cancer aggressively and that is good.

I think the main reason the doctors do not tell you what comes next is that they do not know. It really depends on how she responds to the treatment they already have planed. Some patients do very well with whole brain radiation therapy (WBRT) + chemotherapy. I hope your daughter is one of them. The chemotherapy should help cancers anywhere in her body. So, while the focus is on the brain right now, the treatment will start to work on the other areas as well.

You and your daughter are in my thoughts and prayers.

[sodapop]

Hi, Cancermom,

How is the WBRT going?

I hope everything is going well.

Keep us informed when you have time.

I just found out last week that I need WBRT as well.

Let's keep fighting!