Stage four cancer,mestatic adrenocarsinoma

seanslove said:

SSD and med's
So your saying that SSD will back up and pay us for June,July,August in our first check we recieve? That would be way cool,this was not mentioned to us at the time he was approved nor in the letter we recieved from SSD. I hope your right as this would greatly alter our lives in a positive manner.
As for the med's,yep we sure do know as of yesterday his cocktail will be Fluorouracil,Oxalipatin,and Leucovorin. His first round starts next Tuesday,we will go in to short stay/outpatient until for the 5-6 hour push,then home infussion will meet us there to attach the first 23 hour drip bag to bring home as well as show me how to switch bags for the next 23 hour drip. At the end of that drip,home infussion will come to our house to DC his huber needle. I do not know,but intend to ask today how many every other week cycles of this we will be encountering.
We had a small scare two days ago as a lump appeared in his lumbar area over a two hour period of time and since it was the night before we saw the oncologist we just waited. Upon her seeing it she said more than likely it was a spasm of the back,but sent him back that evening for an MRI of the lumbar and spine. All came out clean as did the urnie tests ordered for that day.
We also got the news yesterday that the EDG proved the upper GI tract is cancer free,however the lower GI is not. So we are working on Mets in the lung,lower GI and pancreas. He has lost about 50 pounds since April,however last night said one of the most positive things to date: "Well hun,the good lord was looking out for me this past winter in fattening me up,so I could stand the weight loss now." He is 6'3 and was up to almost 190 this winter,not really fat,just a good tire staring,but now weighted in two days ago at 140.
Due to many phone calls and much crying to others on these calls I got his Medicaid pushed through this week,which means all his scripts have now been filled and what was going to be a 4-5 day stay in the hospital for chemo is now going to be done at home. Without Medicaid in place they were going to make him stay not because of medical reasoning,but because of the cost of the home infussion team;Isn't THAT STUPID!!!

Yes, it's true that once
Yes, it's true that once it's approved they back date to the original date of filing. I remember my son started getting multiple checks in the mail for days. He actually got enough so that he could rent his own apt. (which was close to Mom).

I didn't know that chemo could be done at home! That's very interesting since it's so hard to transport my husband back and forth. Just lifting the wheel chair in and out of the trunk has left bruises and scratches all over my body. But, knowing our insurance company it would get denied no doubt anyway.

I was reading your prior post about your husband getting the chest tube. Was he diagnosed with plueral effusion? If so, that's really bad because it means the chest fluid is loaded with the cancer cells too which will go into the blood stream and travel. My husband has this himself. I can't believe that there were no symptoms until we reached stage 3. I just hate this disease and wish we could all just find a cure....somewhere.....somehow.

When my husband came home from the hospital on the last trip he had lost about 40lbs and I had managed to get about 10 back on him. Giving him 4 ensure plus drinks a day helped I think. But now he suddenly seems to be losing weight again. I measure his urine out take and it's much higher than the 1200 cc's of intake so I think I'll stop the water pills at least until Monday when I can talk to his doc.

Well, hang in there dear one and tell your husband that I will be praying for you both! Keep us update........we care

seanslove said:

Scans and scans and more scans
ljrn,

Thanks for the info on the ibuprofen,he has a whole bottle of 800 mg ones here,however,he has tried them twice,and both times resulted in sever stomach cramps. Therefore we do not use them anymore and have moved on to 30 mg Ms cotin in conjuntion with the 15 mg oxyicodones.
As for scans,oh my word,he has had about three PET Scans,10 MRI's,10 ultra-sounds,and every bit of 50 or more x-rays. An EDG,colonoscopy,stoped at the thrid sigmod due to omental mestasis,and the list goes on.
As of this past Wenesday we know 100% for sure no mets to brain,bones,or kidenys. We also know it is in the lung,colon between thrid sigmond and end of the small intestine,and possiabley pancreas. Therefore,finally,after a very long wait and a great deal of growth on the cancers part,we start chemo Tuesday.

I just remembered some
I just remembered some services that can help you since you don't have insurance. In my countym we have a cancer services center. They supply everything that you could imaginee for free. Commodes, dressings, recliners, supplements like ensure, etc. They also help with gas for transportation to and from chemo/radiation. They have even helped me get medications that I needed for free. Also, talk to your hoapitL. tHEY have programs for people without insurance. This will be great since one medication for chemo can cost over $56,000. Also sign up for medicaid. He will not be eligible for MEDICARE for two years if on disabiity, unless he'll be eleigle to retire soon and get that instead of disability.
Hope this helps. Lisa

seanslove said:

Scans and scans and more scans
ljrn,

Thanks for the info on the ibuprofen,he has a whole bottle of 800 mg ones here,however,he has tried them twice,and both times resulted in sever stomach cramps. Therefore we do not use them anymore and have moved on to 30 mg Ms cotin in conjuntion with the 15 mg oxyicodones.
As for scans,oh my word,he has had about three PET Scans,10 MRI's,10 ultra-sounds,and every bit of 50 or more x-rays. An EDG,colonoscopy,stoped at the thrid sigmod due to omental mestasis,and the list goes on.
As of this past Wenesday we know 100% for sure no mets to brain,bones,or kidenys. We also know it is in the lung,colon between thrid sigmond and end of the small intestine,and possiabley pancreas. Therefore,finally,after a very long wait and a great deal of growth on the cancers part,we start chemo Tuesday.

I can relate
Seanslove,
I can relate to your husband's story. In November of last year, I started experiencing some mild shortness of breath, usually just while playing basketball or being pretty active. It kept getting worse, but I just thought I might just have a bad case of bronchitis or something. I tried to wait it out and rest up, but it got to the point where I couldn't walk a block down the street without being completely out of breath. I did not have insurance either, because I had just started a new job which did not offer it. I had bought private insurance but it wasn't going to kick in until mid-December, so I was going to try to wait it out until then, but I couldn't do it. I couldn't breathe.

I went to a free community clinic and they recommended I go to the ER, which I did. Once I checked in there, they originally thought I had tuberculosis because of a recent trip I had taken to Africa. They mentioned it might be cancer, but because of my age (26 at the time) and general health, they doubted it. However, I did also have pleural effusion, but they were able to drain it with a syringe, rather than using a tube. The fluid came back negative for cancer.

Anyway, after several negative tests for TB, they biopsied the mass in my lung and I was diagnosed with Stage IV adenocarcinoma. I actually started my chemo a few days after that. I had Cisplatin/Alimta/Avastin, every 21 days. After my first treatment, I transferred my care back to my home state of Georgia, because my parents wanted to be my caretakers. I continued my treatment in GA. The chemo wore me out pretty good. It tends to be cumulative in effect. In other words, the more of it you go through, the more it wears you down, typically.

After three treatments, my tumor had shown some shrinkage, but after the remaining three treatments, no additional shrinkage was shown. I did one treatment of Avastin only and then had a PET scan which showed that my cancer had actually spread to a couple of lymph nodes and my ribs. I just finished with radiation on each of these spots.

For the last several weeks, I've had chronic pain, which I've also been working to find the right combination of drugs to manage. I've also had to have a feeding tube installed because one of the inflamed lymph nodes was pushing on my esophagus and closing it up.

Throughout all this, I've been dealing with Medicaid, SSD, the hospitals, etc, so I know how all of that is. Hang in there!

The best advice I can give you is to look into patient assistance programs. Many drug companies have patient assistance programs for patients who cannot afford their medications. Through such programs, I have received free nausea medication, free formula for my feeding tube, etc. There are many of these services available. Also, next time you visit the hospital, I would ask if you can speak to a social worker. They should have one available and these are the people who usually know of free services available in your area, or from the hospital or drug companies!

Best of luck!
Andrew