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The most important thing I think I can tell you right now is this: you said that if hospice comes, there's no hope. And that is not true. With hospice comes hope, because hospice makes it possible for you all to take a deep breath and talk to each other about management of all of the symptoms. There are patients who go in, and out, of hospice, depending on their symptoms and disease.

Hospice would make it possible for you to have the discussions with your mother, and your father, and make plans about how to manage the disease, instead of reacting to it. If your mother is not eating, and only sleeping, she may have already made decisions that she needs to talk to you about. And whose hope is the Alimta providing? For your mother or for your father and you? Is she taking the drug for you or for herself? These are questions that you could be discussing.

At least talk to hospice in your area, and find out what your options are. Especially if the family is trying to provide all the home care. That is what they are really good at. And maybe it only means that you have someone to talk to who has already been there. Each patient is matched with a hospice volunteer who understands the situation, many times because they have been through the same situation, and really wants to help someone else with the same things.

When my husband took the Alimta, I can tell now that he did it for me. He really wanted to stop fighting. He was SO tired of all of the complications and the symptoms, and he wanted peace and quiet for himself, but he put himself out for our son and me, so that we could feel that we were doing what we needed to do. We finally did contact hospice, but I do wish we had done so four or five months earlier. He was only in hospice for a week, and so I speak from experience when I tell you that I think it would be a great relief for you to be able to step back and see the situation from a different perspective.

My husband's cancer metastasized from his bladder to lymph nodes in his neck, and then to his abdomen and lungs, but it was all the same bladder cancer cells. He only lived five months after the mets diagnosis, but we had time to prepare for his death, and had many discussions about it. It was a relief for all of us to discuss it, and we had no regrets, either about his treatments or his prognosis. I only wish I had stopped fighting it a little earlier, so that I could have had peace earlier. I think that hospice would have helped with this. The local chapter was wonderful.

I wish you peace and comfort on this lonely night, and I wish your mother peace and good sleep. Keep us informed and let us help, if we can.

Stephany in Iowa

Thank you so very much for your replies. I know you know how much it means just to know someone else is listening whose "been there".
My mom had a ileostomy with her RC so that she did lose some terminal ileum. This was done by Dr. Rodney Davis at Vanderbilt in Nashville, TN. Her oncologist gave her B12 shot two days before the chemo infusion.

As far as hospice, I've thought of it. I really have, not so much for my mom but for me. I don't know what to do if I'm to go back to medical school on July 15th and there's no one to take over, which is why I'm considering taking the year off. And even if I do I still need someone to help. The emotional drain is exhausting enough.
But it's like no one wants to admit that we're at that point. If hospice comes, there's no hope. And I don't know if she's ready to go off the alimta, as it represents her only active fight against the cancer, and taking that away takes hope away.
However, I know you're right- the fatigue is incredible. She's starting to hear voices and is no longer a part of life. She's sleeping ALL day and I have to fight (and I mean all-out arguments) for her to just drink some protein shake.
I guess I need to have that serious conversation with her doctor. He is always so optimistic, but I worry he's not realistic. If he's not going to be realistic, who is? None of us want to admit the harsh reality.
Some more details about her: she had diffuse abdominal carcinomatosis with right pleural effusion, and I'm pretty sure I hear a left pleural effusion developing. Nothing in her liver or within the lungs themselves, no bone mets that we know of. Of course, her last pet scan showed none of this so we wouldn't know i guess.
Where had your husband's cancer metastasized to? How long did he fight this? No one is giving us a clear prognosis and I know that's hard to do but we need to know. My dad keeps asking me and I don't know what to tell him.

Savvy: My heart is heavy for you and your family. I just happened to link to your post. I think it may need to be relocated to a different thread, and I'm hoping the administrators will take care of that, but right now I want to respond directly to your post.

My husband was prescribed Alimta in the last stages of his metastatic bladder cancer. His doctor was quite succinct with us, and told us that there was a 30% or less chance that the drug would extend his life and impact the quality of his life. We did decide to proceed with the treatment, but the Alimta made him so dreadfully tired that we did not proceed with the second treatment.

Looking back, I am sure we made the right decision. I wish that I had held a magic crystal to tell me future during that dark time, because I would have halted the treatment sooner, had I been able to understand that his quality of life was more important than pursuing treatments that had very little chance of working.

After you have had a chance to talk with your mother's doctor, really talk with him, and what he sees in the next six months, I would recommend talking with your mother, and get in touch with hospice, which will give you much needed respite. Hospice is not for the dying, it is for the living, and for living well, in whatever stage of the disease you find yourself. They can help you in the planning with your mother. And if your mother recovers, they will drop out of the picture. But right now, you need their help and support. They are just a phone call away.

And now for the wedding plans. If you want to share the wedding with your mother, you might need to change the place and date, but decide what is most important for you and your family. If you want your mother to be able to share the joy with you, then make that happen.

Please keep in touch with us here at the website, and let us answer any questions you may have.

Stephany in Iowa

so so sorry for this sad outcome. where was your mother initially treated?
lots of things to look out for with Alimta
Throughout your treatment with Alimta, you will need to take folic acid and vitamin B-12 to protect your stomach, blood cells, and bone marrow from the side effects of Alimta. You will need to start taking these supplements a week before receiving your first Alimta infusion, and will keep taking them for 3 weeks after your treatment ends. not knowing the diversion she received i can't tell if they took the terminal ileum or not..if so she needs the Bl2 shots.

www.drugs.com/alimta.html
Pat

I'm new to the site- my mother was diagnosed last year after fighting a "uti" for three weeks, started chemo immediately on a taxol combo, had RC in July. They found tumor in 3 nodes, but scans showed it hadn't gone anywhere else. so she did more chemo on a giemsa/cisplatin combo which was awful!
All spring she's been telling her different doctors she has abdominal pain- crushing, debilitating pain. i couldn't believe how much she had changed in a couple months since Christmas when I saw her again because she'd been in bed sick. Pet scans, CT scans, doctor's brains- nothing revealed any sign of cancer. So they came up with the idea of doing a colectomy for her colitis thinking this would be the cure. They open her up and there's a thin sheet of cancer EVERYWHERE in her abdomen, and going into the lining of her lung. Expecting a 5 hour surgery, you can imagine our devastation when the surgeon came out an hour later to tell us this news.
Then she got DVT's so back to the hospital. And then a pleural effusion, so back to the hospital again and home with a permanent drain in. This last development made her most hopeful treatment, a radical surgery on her abdomen with heated chemo perfusion into the abdomen, impossible since it was a sign of spreading disease. As if this isn't enough, she has even more DVTs and we have to do shots twice a day instead of the pill.
So now she's trying a new chemo drug she hasn't had- Alimta (pemetrexed). First got it on Wednesday and had some CRAZY fatigue for the last two days with borderline altered mental status, but I think she's getting past that now. She has a nasty cough and I might have to take her in for that, but we can handle that.
It seems like every turn we take another complication or new development dashes our hopes at ever fighting this disease. It's growing like wild-fire and this new chemo has about a 50% chance of stabilizing the disease, but mean survival is around 10 months- not a pleasant thought.
Any advice anyone can offer on the alimta or on a similar experience with their cancer would be greatly appreciated. I'm so tired of praying and getting no relief. I was supposed to be married in October. My fiancee finally returned from Iraq and we were to be married at West Point but we'll have to cancel it on Monday. I am probably also going to have to take a year off of school since i don't know that she has any longer than that and she needs round-the-clock nursing. I'm so tired.

That's fabulous!!!!! I hope you'll never have to deal with this again!