Hi Fllover,

I've had some luck with diuretics -- furosemide and spironolactone. I had edema in my legs and quite a bit of distension in my belly along with fluid in my pleural sac.

I hope this helps,

G

Dear Kris,

I am glad to provide a place for you to vent. If not us, then who better to understand the frustrations.

G

You'll be in our thoughts and our hearts.  Good luck with SF.

G

Jamie,

Good luck with your Neulasta tomorrow. I hope everything goes uneventfully.

G

Hi Jamie,

I've had Neupogen many times. I had to inject myself daily.  My doctor told me to take it until I get the bone pain signal -- which could feel like a lower back -- like you've tweaked pain or a pain in your breast bone. the pain didn't last. If you had to keep injecting, then I would suppose you would continue to get the pain.

G

6

(5 replies, posted in Members' Cafe)

My kids were 13, 18 and 20 when I was diagnosed.  I was very straight forward with them. I think they appreciated knowing what's going on and I still keep them in the loop as to tumor markers and scan results. My youngest didn't talk about his feelings that much. But being a teenage boy -- he still doesn't talk about his feelings that much on many subjects. But he was very considerate with me and always try to help me when I ask for help.

G

7

(6 replies, posted in Insurance)

There's some sort of program that helps to pay 65% of the cost of COBRA.  I'm going to start on COBRA in August -- through BC/BS of Calif. as well.  I've been told it'll cost around $800!

G

8

(14 replies, posted in General Discussion)

What wonderful news about the shrinkage! 

G

9

(10 replies, posted in Members' Cafe)

I sure miss him also.  I miss seeing his signature on recent posts.  It's one of the many things that unite us.

G

10

(21 replies, posted in General Discussion)

Dear Kris,

I'm feeling so good about your being in charge of your tumors and treatment.  I hope the MRI will show good things.

G

11

(32 replies, posted in General Discussion)

Hi all,

My pleural effusion draining went smoothly.  They got out about 900ml this time, just like the first time. I haven't heard from them as to the composition of the fluids -- whether or not it has cancer cells.

The pulmonary doctor told me there are two other ways to deal with the fluids. One is pleuradesis -- it involves surgeons and several days of hospital stay.  They would inject a talcum powder like substance into the pleural cavity which would irritate the area and cause pain.  And as the area heals, the pleural sack should stick to the lungs and not leave an area for the fluids to accumulate. The last method would be to attach a drain where a family member would need to drain you every so often. Sixty percent of these people would get the scarring and attachment of the pleural sac.  The other forty percent would just keep on draining.

I'm not sure how I feel about any of these options.  Scarring and pain doesn't sound like fun to me.  Getting drained is no picnic either.

G

12

(32 replies, posted in General Discussion)

This is very interesting news.  I am having pleural effusion as well.  But, it started while I was on Nexavar.  Since then, my regimen has changed to Gemzar and Oxiliplatin.  I do have mets to my lungs, though the tumors are little -- probably too little to have cause the pleural effusion.  When I got drained last time, they didn't find any cancer cells in the fluid. My oncologist didn't have any explanation for the pleural effusion. 

I'll be having another drain next week and I'll be curious as to what they'll find this time.

G

13

(12 replies, posted in In Remembrance)

Thank you very much for passing on Jeff's message.  We all loved him dearly and can take heart in knowing that he knew how much he meant to us.

G

14

(7 replies, posted in Chemotherapy)

Hi LB,

I know of three drugs that may help with keeping your appetite up: Mirtazapine, Marinol and Megace.  Mirtazapine is an anti-depressant and the appetite increase is one of it's side effects.  Marinol is a Marijuana derivative which tends to kick in after a couple of hours.  Megace mimics the second trimester of pregnancy in terms of appetite increase - I've had the most luck with this one.

G

Hi Tiffany,

Getting a referral to Mayo sounds like a great step to take. Get second and third opinions. I think they should be offering you alot more options!

There are quite a few chemo drug combinations that people have had on this site as well as other targeted drug therapies like Nexavar and Avastin. There are also radiation treatments like sir spheres and theraspheres.

I hope your doctor can provide your with anti-nausea medications in the meanwhile.  I know how despiriting it is to be losing weight,  but that can be controlled with the anti-nausea medications and also there are medications to stimulate the appetite.

I hope this helps,

G

16

(5 replies, posted in Insurance)

Hi Karen,

The policy of the LTD is to provide enough coverage so your income becomes 60% of your previous income.  So if you get SSD they would make up any difference between that and the 60%. I was turned down for SSD due to not having had worked continuously the last 10 years. 

Regarding the health insurance, like Lisa, I will end up paying Cobra when my employer stops paying for my health insurance -- one year after I started on disability.  I know that it'll end up being very expensive so it's wonderful that you'll be able to add your husband to your helath insurance policy.

G

17

(5 replies, posted in Insurance)

Hi Karen,

I have Long Term Disability insurance through my employer as well. The long term disability doesn't kick in until a certain amount of time.  But I get short term disability payments from my state -- California which goes for one year. The FMLA is a job protected leave which is probably done at this time for your husband. You can probably apply for Social Security disability at this time. Usually the social security people are very helpful.

But all this is different than health insurance.  Your husband's company will stop paying at some point.  It'll be good find out when they will stop paying, and when you are eligible to add your husband to your health insurance.  They usually don't allow changes except in November unless there's an "event" and you don't want any lapse in coverage.

Companies vary in their policies and I would suggest that you call the HR or the disability manager to find out the particulars of yours and your husbands's policy.

I hope this helps.

G

18

(46 replies, posted in Blogs)

Jeff will be very missed.  My heart goes out to Jeff's family.

G

19

(6 replies, posted in General Discussion)

Hi Barbara,

I had the sir spheres done 2 years ago and had excellent results from it.  Though they weren't able to give me the full dose because it was backing up, my liver tumors haven't given me any problems since the procedure. They suggested that I sleep in a separate bed, though I didn't end up doing that -- my husband and I just kept to our side of our king size bed.  The half life of the radiation is quite short and it doesn't go very far in distance.

Another thing that happened, though it's not usual is that I had vomiting after the procedure and they kept me in the hospital overnight instead of sending me home that day.

I hope this helps,

G

20

(46 replies, posted in Blogs)

Dear Valerie and Rachel,

My heart goes out to you and your family. Our dear Jeff has been one of the heart centers of our community.  Now, you are part of us as well.

Hugs,

G

21

(15 replies, posted in Pain Management)

I hope your port pain is less with the Motrin. Good-luck.

G

Pauline,

Thinking of you as well.  We're always here for you.

G

23

(15 replies, posted in Members' Cafe)

Lainy,

I'm so happy to hear about your Miracle Man's scan!

G

24

(8 replies, posted in Members' Cafe)

Happy Easter everyone!

Love,

G

Dear Jeff,

As always, it's great to hear from you. Sounds like you've had quite the busy with with all things medical. Thanks for posting the information on the potassium/laxative connection.   I've been wondering what's causing my low potassium levels-- Miralax, from the looks of it and I've been having to take potassium tablets daily.   It looks like I should be more diligent about taking my potassium tablets, since I can't forgo the laxative.

I am now picturing you chasing your grandkids around the house (sockless!)

G