lung drained, short lived relief

Hi Tracy Lee,

I'm sorry to hear about the fluid in your lungs and how miserable it's making you.

I know your Dr has indicated ipi may not be working for you, but how does he know this if the scans havn't been done after the 4th infusion? It is to my knowledge that some people's nodules/tumours shrink slowly over time after ipi, so couldn't the fluid be a sign of an inflammatory response??   There must be some medication in the meantime to help with the fluid so you don't have to continue being drained.

As for work, I've been on disability since being diagnosed. I need to focus on my new "job" of being healthy and beating this thing – can you do the same thing rather than quit? 

Let's hope you can get into this BRAF trial soon, so you can get started eliminating those nodules – if of course the ipi isn't doing it's job.

Hang in the there –  I'm thinking of you and hoping for good things.

Lisa

Hi Tracy Lee,

You'll get scanned in 4 weeks since you just had your last infusion, so you'll know if the ipi is doing it's magic. Some people's immune systems are late responders and take longer to kick in.  Perhaps ipi is working for you and with the added BRAF trial, it can help speed things up.

You're right, it is exhausting keeping track of all the appointments, call backs, scans, etc. My "mothers timetable" is filled with appointments rather than fun stuff with my daughter. It's hard not to get down at times through all of this, but keeping strong is important and so is your faith.

Lisa

Hi Tracy Lee,

You'll get scanned in 4 weeks since you just had your last infusion, so you'll know if the ipi is doing it's magic. Some people's immune systems are late responders and take longer to kick in.  Perhaps ipi is working for you and with the added BRAF trial, it can help speed things up.

You're right, it is exhausting keeping track of all the appointments, call backs, scans, etc. My "mothers timetable" is filled with appointments rather than fun stuff with my daughter. It's hard not to get down at times through all of this, but keeping strong is important and so is your faith.

Lisa

Hi Tracy Lee,

I'm sorry to hear about the fluid in your lungs and how miserable it's making you.

I know your Dr has indicated ipi may not be working for you, but how does he know this if the scans havn't been done after the 4th infusion? It is to my knowledge that some people's nodules/tumours shrink slowly over time after ipi, so couldn't the fluid be a sign of an inflammatory response??   There must be some medication in the meantime to help with the fluid so you don't have to continue being drained.

As for work, I've been on disability since being diagnosed. I need to focus on my new "job" of being healthy and beating this thing – can you do the same thing rather than quit? 

Let's hope you can get into this BRAF trial soon, so you can get started eliminating those nodules – if of course the ipi isn't doing it's job.

Hang in the there –  I'm thinking of you and hoping for good things.

Lisa

Dear TracyLee,

I was scanned (PET/CT) two weeks after my 4th infusion but was part of a clinical trial and that was the procedure. 12 weeks later I was scanned again (with that scan looking much better) and I am about to be scanned again this Thursday, an additional 12 weeks has gone by.

I am so sorry to read about your lungs filling with fluid. What exactly is causing that? Is it painful to have the fluid drawn off? You dont mention that so I am wondering about your level of pain with that. Yes the relief is immediate but the pain of getting to that relief must be hard?

I hope that BRAF gets going soon!! People have a point with stopping work for now, as your body uses a lot of energy to heal and cancer treatments are hard on us. Rest is important, essential actually. I believe short term disability is usually a higher percentage of your salary and is used first, then long term disability is at a lesser percentage of your salary and for a longer period of time. I got 23 weeks of short term disability at 67% of my pay and was able to still get SSDI as SSDI counts EARNED income. I have not been found eligible for long term disability through my employer (some silly rule about being treated in the previous 12 months for the disorder I am out on leave for..I know, stupid, but when I did get it before, it was 60% of my pay, and they counted my SSDI so they reduced the amount and then only paid me monthly. My employer contracts with this company for the short and long term disability and I am not sure even they KNEW of all these rules when it comes to being out multiple times and how things are looked at…..the company is UNUM by the way. Anyways, if you go out on medical leave (you have 12 weeks of FMLA) you can apply for SSDI and apply for your short term disability and once you go back to work, and are making more than $1000 a month, your SSDI would stop (you have to notify SS).

Thinking of you,

Vermont_Donna, stage 3a, NED

Dear TracyLee,

I was scanned (PET/CT) two weeks after my 4th infusion but was part of a clinical trial and that was the procedure. 12 weeks later I was scanned again (with that scan looking much better) and I am about to be scanned again this Thursday, an additional 12 weeks has gone by.

I am so sorry to read about your lungs filling with fluid. What exactly is causing that? Is it painful to have the fluid drawn off? You dont mention that so I am wondering about your level of pain with that. Yes the relief is immediate but the pain of getting to that relief must be hard?

I hope that BRAF gets going soon!! People have a point with stopping work for now, as your body uses a lot of energy to heal and cancer treatments are hard on us. Rest is important, essential actually. I believe short term disability is usually a higher percentage of your salary and is used first, then long term disability is at a lesser percentage of your salary and for a longer period of time. I got 23 weeks of short term disability at 67% of my pay and was able to still get SSDI as SSDI counts EARNED income. I have not been found eligible for long term disability through my employer (some silly rule about being treated in the previous 12 months for the disorder I am out on leave for..I know, stupid, but when I did get it before, it was 60% of my pay, and they counted my SSDI so they reduced the amount and then only paid me monthly. My employer contracts with this company for the short and long term disability and I am not sure even they KNEW of all these rules when it comes to being out multiple times and how things are looked at…..the company is UNUM by the way. Anyways, if you go out on medical leave (you have 12 weeks of FMLA) you can apply for SSDI and apply for your short term disability and once you go back to work, and are making more than $1000 a month, your SSDI would stop (you have to notify SS).

Thinking of you,

Vermont_Donna, stage 3a, NED

Hi Vermont_Donna,

I was not sure whether to start a new topic or branch off your reply, so I apologize in advance if I have breached the standard protocol of the board!

I have been unemployed for a long time as I have been dealing with other health issues leading up to the recent discovery of Stage IV melanoma tumors in my lungs and one in my brain. I am getting ready to apply for SSDI, and wondered if you used an attorney, an advocate, or if you just went for it yourself. Did it take you a long time to receive it?

I appreciate any tips you can provide!

Sincerely, Cristy

Hi Vermont_Donna,

I was not sure whether to start a new topic or branch off your reply, so I apologize in advance if I have breached the standard protocol of the board!

I have been unemployed for a long time as I have been dealing with other health issues leading up to the recent discovery of Stage IV melanoma tumors in my lungs and one in my brain. I am getting ready to apply for SSDI, and wondered if you used an attorney, an advocate, or if you just went for it yourself. Did it take you a long time to receive it?

I appreciate any tips you can provide!

Sincerely, Cristy

Hi Cristy, I thought I would jump in and see if I can help at all. I am on SSI.  I didn't qualify for SSDI as as I hadn't worked for over 2 years before I applied. I only get $400 but it helps. My income is reviewed each year and my health will be reviewed in about 3 years to see if I still qualify. The most important part and the reason I applied is that i now qualify for Medicaid.

I was told about this from the hospital social worker right after surgery. They made the appointment and " helped" a little with the paperwork. I would contact them and see if they can give you a bried description of SSDI and whether you would qualify or not. You don't need an attorney unless you are turned down and then you may want an attorney to help appeal the decision.

Expect it to take some time to get your decision (called an award letter). Mine took 3 months,even though they told me I was obviously disabled (cancer) and it would only take a few weeks. Expect it to be a headache.

Others will jump in with more knowledge than I.

Nicki, Stage 3b

Nicki, thank you so much for the information. I actually had applied once a little over a year ago when I had a large meningioma that was causing me a lot of problems and the claim was denied. I decided to do the whole claim process with a lawyer this time because I just don't have the energy right now to deal with gathering all of the necessary paperwork and getting it to the SS office.  I also think they might act a little quicker if there is a lawyer bugging them, but the claimant pays dearly for the service, which does not seem fair at all. I guess I amazed that Stage IV melanoma is not on the compassionate allowance list since other types of metastatic tumors are, and the prognosis for the melanoma is worse…oh, well. Maybe that will be my mission.

Okay, I am off my soap box for now! 🙂 Thanks again for you help..

Cristy, Stage IV

Nicki, thank you so much for the information. I actually had applied once a little over a year ago when I had a large meningioma that was causing me a lot of problems and the claim was denied. I decided to do the whole claim process with a lawyer this time because I just don't have the energy right now to deal with gathering all of the necessary paperwork and getting it to the SS office.  I also think they might act a little quicker if there is a lawyer bugging them, but the claimant pays dearly for the service, which does not seem fair at all. I guess I amazed that Stage IV melanoma is not on the compassionate allowance list since other types of metastatic tumors are, and the prognosis for the melanoma is worse…oh, well. Maybe that will be my mission.

Okay, I am off my soap box for now! 🙂 Thanks again for you help..

Cristy, Stage IV

Hi Cristy, I thought I would jump in and see if I can help at all. I am on SSI.  I didn't qualify for SSDI as as I hadn't worked for over 2 years before I applied. I only get $400 but it helps. My income is reviewed each year and my health will be reviewed in about 3 years to see if I still qualify. The most important part and the reason I applied is that i now qualify for Medicaid.

I was told about this from the hospital social worker right after surgery. They made the appointment and " helped" a little with the paperwork. I would contact them and see if they can give you a bried description of SSDI and whether you would qualify or not. You don't need an attorney unless you are turned down and then you may want an attorney to help appeal the decision.

Expect it to take some time to get your decision (called an award letter). Mine took 3 months,even though they told me I was obviously disabled (cancer) and it would only take a few weeks. Expect it to be a headache.

Others will jump in with more knowledge than I.

Nicki, Stage 3b