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Stage four cancer,mestatic adrenocarsinoma

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

My husband went from perfect health to down with what seemed like the flu. That was the 1st of April. Due to not having insurance or extra pennies for doctors,he tried to fight what he thought was a really bad cold. On May 18th he could fight no more,could not breath,and finally gave in to trying the emergancy room. Of course they took him. Within a few hours he had a tube in his left pluerl sack to drain the fluid which was causing him not to be able to breath. For the next 12 days he stayed there and they did what they said they never do:sent him home with his chest tube. On May 21st they told us he may have cancer,on May 26th they told us it was mesatitic adrenocarsinmoa,stage four.
From there we have walked a path filled with PET Scans,MRI's,Ultra-sounds,enough blood work to drain a cow,EDG and Colonoscopy,which the colonoscopy had to be stoped because of the omental mestasis at the thrid sigmoid of the colon. From there,two weeks ago this Thuresday he had his medi-port,much to our displeasure placed,as we would have rather went for the IV's instead,however,the doctors refused our request.
Now we sit and wait for answers to the day when chemo will start and if it will really do anything at this point. He has lost over 40 pounds since April,is in non-stop pain. The doctors answers:take this take that,however,they do not offer a schedule which works. This brings us to today;his birthday. Today I have done more research and we are going through trail and error phase of managing pain,pain meds,all in a hope for relief and his desire to eat to return. Has anyone else faced anything like us?

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Reading your post felt like I was reading my own story. My husband too has adenocarcinoma with a malignant pleural effusion. He also had a chest tube inserted but they did not send him home with it. I insisted that he stay in the hospital until they could give him a pluradesis (talc). Our journey began at the end of February when we thought he had pneumonia. It wasn't until two hospital stays later having his lungs drained that we found out he had cancer. He is at home now an unable to walk more than 2-3 feet at a time with 24/7 oxygen. I must be with him at all times and am unable to leave the home. We just started chemo of Gemzar/Carbo about 3 weeks ago and he had been given 3 units of blood twice since then because the chemo is zapping his counts. We won't see the onc doc until July 20th to get information which we are severely lacking right now.

Your husband getting the port is a good thing actually because his veins will fail from the treatments and this is important for him to have it.

My advice to you is watch is cough carefully. I noticed that each time my husbands cough increased it was actually more fluid building up in his lungs. I now know to start the double dose of water pills immediately when that happens.

Good luck to you and please let us know how you both are doing.

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

We were very lucky to aviod the Talc process,as the pluerl effusion slowed down enough three weeks ago to remove the tube. He is not completly bedridden,however,perfers to spend most of his time there due to the pain. I got him out of the house yesterday for the first time in a month to do something other than go to a doctors office. I am so frustrated with the doctors. They were supposed to start his chemo last week,however,for reasons unknown to us did not nor did they call and say why. You can bet I will be ringing their phones at 8 am this morning.
I am so sorry about your husband and understand what you are going through. Thanks for the advise about the coughing,we are fortunate enough that all of this has stopped. Instead we are dealing with him in constant pain. They always asked what is his pain level on a scale of 1-10 and he always says it is never less than a 6 and more like an 8,but he has become used to it. No one should have to become use to being in pain;it's just not right.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I am very familiar with the frustration that comes from doctors and insurance companies. It's like the "right hand doesn't know what the left is doing". My husband needs a home nurse, physical therapy and an aide. Insurance will approve perhaps two visits and then you are forced to wait two months for approval all over again. Not to mention pending approvals for nausea medications. My poor husband was vomiting for two days from the chemo and we were actually forced to pay $600 for 48 pills that were "pending insurance approval. When you call, they blame it on the doctor and then the doctor blames the insurance company. I get so angry because I have my hands full caring for my husband right now and it's so unfair to be forced to spend hours on end calling people.

Let me know how your husband is doing and I wish you and your family the best...you'll be in my prayers.

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

I so understand where you are coming from. Hours on end with the phone attached to your ear to only hear a sorry there's nothing we can do right now. Doc's writing out scripts which you tell them there is no way you can afford to fill,and all the while watching the one you love so much suffer. We have no insurance and are awaiting Medicaid approval. They say any day now as the SSD was approved,however,first check will not arrive til Sept.
The doc's put him through h**l two weeks ago with all these procuders and tests,which he still has not recoped from,saying as soon as they were done we'd start chemo,that was two weeks ago now;what are they waiting on?
He was so sick yesterday and I only pray today he will feel a little better. To go from perfect health to this is devstating to him and me,but more so him.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Sorry your SSD won't arrive till Sept, but the good part about that is they will pay you back to the original date you filed for it. That happened to my son and he thought he was rich! ha ha We too had to wait a few weeks before chemo started. My husband is on Gemzar/Carbo...3 weeks on and 1 week off. Do you know yet what meds your husband will be getting?

My battle with the insurance company went from bad to worse. I'm going to continue the fight but in the meantime I've been thinking about selling some things maybe even the house if needed so I can get some help.

I don't know if anyone has talked to you yet about the chemo side effects. No one told me anything and when he started to seem like he was failing quickly and just sleeping all the time I thought it was the disease when it was actually from the chemo. When he has his one week off he's actually quite alert. It's going to be like a rollercoaster ride for you and I hope you return here often for advice and support. Everyone here is just wonderful!

Let us know how things are going for you and you'll be in my prayers.

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

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!!!

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

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's picture
seanslove
Posts: 71
Joined: Jul 2009

Thank you for your prayers and you have ours in return. I,like you,find it hard to believe,in our case,his cancer did not present any real warning signs until it was at stage four. I guess looking back in retrospect,the sign were there,however,ignored as common pains and aches of aging. Being the brat he is,lol,he for some reason refuses to try the ensures,which I bought two weeks ago and now his doctor has told him he really needs to be drinking. He promised her Wensday he would,yet here we are at Sunday and he hasn't.
His pluerl effusion was diagnosised as malignat the first night in the hospital,however,even with the permenat damage to the lung,the fluid levels dropped enough for the removal of the tube and aviodence of the talc,which was the doctors hope from the begining. His thorasic surgen said upon removing the tube,the fluid levels which he might continue to experience until the start of the chemo would be tolleriable,therefore,they choose to remove the tube. Even though we have oxygen in the house,the big machine and the protable tanks,as the doctors said would happen,his need for oxygen has decreased. Now,only when going for extened walks or when he gets nervous,does he require the use of the oxygen.
The cells from the fluid,which was biyopsied(sp?) the night they inserted the tube was how they found the cancer. This only took about three days,the further testing proceded to try and find the source of orgin,which to date,due to this cancer not producing tumors,has never been determined.
Tuesday we begin our journy into Chemo,first 5 hour puch there at Beaumont,and the second two 23 hour drips at home. I hope you will check into your husband doing his chemo at home,as it sounds really hard on you both.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

It really sounds like you two are having a hard time. I can relate to all of it as I'm sure many others can as well.

I have a suggestion that might help him drink the ensure....blend it together with ice cream and just tell him it's a shake. Don't say a word about the ensure being in it...bet he won't even notice. He'll probably just think...wow look how good she's being to me!

I too am glad you got the port put in. I know you don't like it, but it is true what others are telling you about the veins collapsing so it's a good thing for you.

My husband had a double chemo last Tuesday (Gemzar/Carbo) and for some odd reason which I don't understand he has had no effects from it. He usually does, but this week he seems to actually feel better than he has since before the initial diagnosis. I woke up Thursday morning and looked over to see if he was asleep still and he was gone! Then I saw the oxygen hose on the floor....he wasn't attached!!!!!! I jumped up and ran around the house looking for him in a panic. I finally found him on the back patio reading the morning paper which he had walked out (with his cane) into the driveway and got himself. I've been racking my brain trying to figure out what caused this change. I know he had a blood transfusion over 1 1/2 wks ago but he's had those before without any difference. Only thing I can remember is starting him on prednisone. I'll have to ask the PA when we see her on Tuesday. Whatever it was...maybe I can get some too? ha ha

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

Oh Michelle P, that is so awesome and suh an inspiring thing to hear this morning. I only hope my Sean is feelin better like your hubby after the first treatment this week,and any small improvement will do here. We go at 8 am this morning for the blood draw,the at 10 a phone interview with SSI,they called last week and said now that I am making so much less he might be eligable. Thank goodness for his Medicais coming through last week and I only wish his SSD check would come before Sept. I am sure you did panic when you saw the oyxgen hose on the floor. Sean had went four days last week without his,awesome,and now has been back on it on and off for the past few days.
Well,tommorows the big day,his first chemo,Folfox,5 hours there,and the next two days with a drip at home. I am very nervous with all the weight loss,and my other concern now upon reading about white and red cell counts is his might be to low to start chemo. Mentally he could not take another delay and phsyically I do not think he could take another delay in treatment. I guess all these questions and more will get answered today.
Again congrats on the good news,I hope it continues!!!

ljrn1963
Posts: 7
Joined: Jul 2009

Thank God that you had the mediport placed, eventually the chemo would eat the interior of the veins if given IV. Thats why its recommended so often. I am in severe pain constantly from the cancer spreading to the bones. Has he had a PET scan yet? If it has reached the bones, try taking ibuprofen with the narcotics. Ibuprofen is a nonsteroidal antiinflammatory drug and works especially good with bone tissue.

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

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.

ljrn1963
Posts: 7
Joined: Jul 2009

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

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

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

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