homecare and other options?

[loveher]

Hello everyone,

Unfortunently my mothers disease has progressed considerably in the past few months. She had brain radiation for the second time in march, the doctor was surprised (pleasantly suprised) that she responded, we are very thank full for that. however, we know that it is still there and will progress eventually. what other options are there? tykerb/zeloda failed last year. are there any other chemos that can cross the bbb?

We are usually a family filled with hope but my moms situation does seem dire. she also has mets in the lung and liver. and from what the doctor has told me there are innumerable mets in her spine now.

My mom is very weak right now, she does not get up from the bed very often as she is still unsteady on her feet. She is however still absolutely set on fighting this disease and refuses to give up.

My other concern is that there is a period of time when i leave for college and before my aunt comes that we will need someone to help my mom at home. Does anyone know anything about social workers or patient care takers?

thanks so much!

[pattyz]

Sue,

I was 50 - dx'd Stage IIIb,

My mets were July & Sept. 2002. I had focalized radiation for the two brain mets - Navelbine/Herceptin worked magic on my internal nodes, small spot on a lung, and spot on my pelvis. Bod's stayed NED since then. But not so my brain. The second occurance in brain was with 14 lesions. They were all treated with more focalized rads (2 SRS Headframe & 2 CyberKnifes two days apart.) over the course of 17 mos. ( have just checked on the time).

With my current six brain mets I was told: no more rads, EXCEPT WBR/T.... So, since Aug. '05 I have been on Xeloda/TEMODAR. Only added the Tykerb about two yrs ago when it became available.

The Xeloda/Temodar combo worked fantastic at first. However for the past two yrs., I have been periodically progressing slowly. Now will be changing to ?? something else. ASAP

My intent here is to see if you've considered this particular combintation? Here is my dose/schedule 'in case' you'd consider it: (me age 60 on the 12th. NO, I don't have any other mets that we know of, nor other health issues we know of. Very much unlike your mom)

Xeloda: 2000 mgs. TOTAL per day - in two divided doses, 7 days on, 7 days off. Temodar: 250 mgs. per 7 days out of every 28, (in combination w/ the Xeloda.) Since there was no 'standard' at the time, my onc created this dosage/schedule for me over time... as he had originally. It was never a higher dosage, however. Schedule of days differed a bit with a lower dosage briefly.

I'm hoping so much that your mom will combine her spirit with SOMETHING that will do her justice.

Wishing her (and yourself!) the most compassion... and best care available to your mom.

xoxopattyz

[ElaineM]

I think I read that Carboplatin can be used for brain lesions, but I could be wrong about that. Ask your mother's doctor if that can be used. Check to see if your mother's insurance will help pay for homecare or call your local Catholic Charities office. They might be able to suggest some resources. If your city or state has a phone system where you dial 211 to get suggestions about homecare you might be able to get some info from that source. Of course you might have to do background checks on the people they suggest. Your mother's doctor or nurse might be able to make suggestions. The hospital social worker might be able to suggestions some options.

[Believe51]

Hello Swetheart, I missed you and am so sorry that we have to meet again like this. I would like to talk to you so when you get a chance please pm, I will give you some of the previous research I had to do for Ed, he has too many brain mets to count and is in a dire situation since a second whole brain radiation and radiation in general is out. Please keep the faith until we can get you some help for Mom. There may be something on my list that can help her. I only popped in for a second and I am glad I did. Please give me a hollar...and hold on to hope the best way you can. I will be back later. Love to you as always.>>Believe51

[StephN]

Dear Loveher -
Sorry to hear that your Mom is in this situation. She may be too weak for the Carboplatin that was suggested.

Has she had the bone mets radiated?? This can be done and will shrink her tumor load. Keep pushing her doctor for other treatments. Don't let him give up on her.

Your mom's nurse case manager should have all the information on hospice (this does not mean she is at the end), but that you need more help and they also give "palliative care." You and your aunt should not be taking on your Mom's care without outside help now anyway.

You have all our best thoughts and hope for your mother.

[ElaineM]

Maybe your local American Cancer Society would be able to suggest some resources for homecare too.

[harrie]

Hello Sue,
I am sorry I don't have any advice to give in regards to tx. As far as home care goes, maybe you can talk to a home health nurse and get some information.
Mainly I just wanted to say hi to you and let you know I am thinking of you and your family.
Take care Princess.
Love, Maryanne

[Believe51]

Just thinking outloud with you. Why did Mom stop the Ixempra, were the side effects too rough for her?? Dosage can be adjusted if need be and has proven thus far to be a great drug. Ed is on the Ixempra alone and it is unknown at this point if it passes the BBB, a sister drug to Ixempra does. Anyone I know that is on this drug also uses something else or adds Herceptin to the mix. They also have mets systemically in other areas and not the brain. Ed has the disease controlled in the body for the most part, it is his brain that is severely affected. If this drug does pass the BBB I will be the first to know and will blast the marvelous news here.

I will talk to you soon. Just wanted to ask about the Ixempra. I even think I will have Ed's dosage changed because he is soooo so frail right now.>>Believe51

[Sheila]

Sue
So sorry to hear about your Mother....have you tried to talk to the social worker where she gets her treatment, or call the American Cancer Society...they may readily know what options are available in your area. I would go with the social worker first.....sending you positive thoughts and prayers that your Mom will regain her strength...it is hard to concentrate on school when you are worried abvout your Mom!

[SoCalGal]

Oh Sue, I am sorry to hear the news about your mom. Glad to hear you are still in college and you sound like you are handling things on behalf of your mom.
Way to be a warrior-daughter : )
With love and blessings,
Flori

[Jackie07]

Sue,

Be sure to talk to the counselor at your school when you return to campus. They will provide needed support to you as you are going through such tough time in your personal life.

Sending love and prayers from Central Texas.