case manager called

[MrsB]

This morning the case manager called to tell me that the team of specialists want to meet with me. I had talked to the neurologist yesterday and he told me treatment would be radiation / chemotherapy.

My husband was disoriented yesterday and this morning's call from the case manager (her first to me) was pretty doom and gloom. I am asking for copies of reports WITH CONCLUSIONS, not just lab figures. They want to TALK. I would like to see recommendations and assessments in writing as well.

I want to give my husband every chance to fight this, yet I feel that when I go down to see them they will paint a very bleak picture. Called my sister-in-law to accompany me for moral support.

Called my husband this morning and he was not disoriented.

Treatment will involve being near the hospital where he is right now because there is no radiation facility right here near us. So, this sounds like a skilled nursing home. Being with so many strangers, and short term memory problems leads to lots of disorientation for him. I want him to get the treatments and not give up.

Please pray for us as we make these critical decisions. I think he deserves the best opportunity to fight. I think they will advise me otherwise, but I will not agree to that.

It has been 6 weeks since any chemo while we waited for an appointment and then test results. I think that's long enough to wait for sosme kind of positive action. Think it's time to resume treatment, time is of the essence.

Has anyone out there come across similar circumstances? Are cancer cells in the spinal fluid more serious than tumors / lesions?

My husband's vital signs continue excellent.

MrsB

[Karma1976]

sometimes little strokes in your signature may be associated with a brain lesion too WHICH is NOT to say it can not be treated...you can ask anyone here

[Don Wood]

Hi, Mrs. B! Welcome to the board. Your plans sound very good. It is obvious you are a good caregiver and advocate for your husband, and that is what he needs most. Your husband is the same age as my wife (I didn't say that, guys!), and she is in the 10th month of her survivorship after chemo and radiation treatments. She is now on maintenance to keep the beast at bay. Good luck and prayers. Don

[john]

Some info on TIA. It is hard to say what the caused the TIA. It could be the cancer or if your husband has high blood pressure/cholestorol before the cancer it could be two different problems.

http://www.1uphealth.com/health/transie ... _info.html

I breifly did a search on the spinal fluid. Sometimes Dr's use

methotrexate - it is injected into the membrane around the spinal cord.

I am not a Dr, but maybe you could ask about this.

I also read a ommaya reservoir / intrathecal chemotherapy may be used

Praying for you and everyone here

[john]

Not sure if this will be helpful or if this is related to what is affecting your

husband but I thought it might be - couldn't hurt to ask

: Lung Cancer. 2003 Apr;40(1):99-101. Related Articles, Links

Intrathecal gemcitabine chemotherapy for non-small cell lung cancer patients with meningeal carcinomatosis--a case report.

Chen YM, Chen MC, Tsai CM, Perng RP.

Chest Department, Taipei Veterans General Hospital and School of Medicine, National Yang-Ming University, Shih-pai Road, 112, ROC, Taipei, Taiwan. ymchen@vghtpe.gov.tw

Intrathecal chemotherapy has been the mainstay treatment for meningeal carcinomatosis for decades. However, this has not been the case with non-small cell lung cancer (NSCLC), due to the low efficacy of the drugs that could be used before. Gemcitabine is an effective drug against NSCLC and has a structure similar to cytarabine, which has been widely used in intrathecal chemotherapy. Thus, intrathecal gemcitabine chemotherapy might prove to be suitable for leptomeningeal carcinomatosis induced by NSCLC. We herein report our experience using gemcitabine intrathecal injections in a NSCLC patient with leptomeningeal carcinomatosis.

[Debaroo]

Mrs. B, upon my dads diagnosis I called the onc. before my dads first chemo appt. I told him that my dad is pretty upbeat and believes that he can fight, and is up for it, so please do not give dad a doom and gloom attitude-as I feel that his emotional state will have everything to do with how he handles the side effects of chemo as well as how his body helps the chemo fight off the cancer. The dr agreed, he said that he dosn't believe in giving people timelines, as he is not God. Man was I relieved.

My point is, you might want to call in advance and explain that THIER attitude will affect YOURS AND YOUR HUSBANDS ATTITUDE, and while you appreciate honesty, and that he should be given every piece of information on how to help aid the chemo in working-diet, etc.. I have no problem telling the nurses, etc. that my dad is not dead yet, and I would appreciate it if they would treat him with the dignity and respect that he deserves, and that every case is different-so they should not treat him as if he is a book and they have jumped forward to read the 'last page' and know what the outcome will be.

I hope this was of some help to you, GO GO GO!!!! I am sorry that I can't offer any info regarding the spinal fluid-although my dad had a tumor on his spine, but the chemo took care of that-but that is different from what your husband has. There are definatly people that will be of more help regarding info. to you (John gave you some good leads). Just wanted to offer some support. Take care, and try to keep us posted, you are in my thoughts and prayers. Deb