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Wife was diagnosed with stage IV a month ago

Lil Buddy
Posts: 6
Joined: Mar 2010

She is 56, her feet and ankles swelled up, went to emergency, they took lung x-rays, thats where the cancer showed up, we had insurance TERRIBLE INSURANCE! Set up appt. for lung Doctor, earliest appt. was 4 wks away, from there to the onoclogists (cancer doctor) sfter numerous tests cancer was found in upper rt lung (fist size) and lower right lung small (pebble size) I asked the cancer doc what is the time left was told 6 months without treatment, 2yrs with treatment. The doctor answered the questions to quick for my liking (standardized answers)these answers were given to us before any biopsy. Needless to say we both left the office shocked and devastated!
I know absolutely nothing about Cancer nor its treatment, so we went home we own a business thats open to the public, and I started asking questions of my customers, figuring someone had to know something or had a experience with relative, friend due to cancer. I spoke with anyone that would listen. Looking for starting point of what to do, I was surprised of how many have been affected by cancer somewhere in thier lives. (I've been in business for twenty years same location so most of my customers and I are like friends I have a good repore with them. I wasn't whinning, just looking for information. Although there was times that I had hard time with my emotions)
99% asked me if they were going to remove the fist sized lung,and work with the pebble sized lung. I replied I didn't know yet, but 100% said to get a 2nd opinion. Remember terrible insurance.
So we had another appt with cancer doctor and I asked about the lung removal, and was told it wasn't an option. I asked why and she changed the subject and basically ignored me (I wasn't the one with the cancer, my Wife of 29yrs, the Mother of our two kids is, like my concern wasn't important. Before we left I asked again,
The Cancer Doctor set up an appt. for an MRI which our insurance said they would only pay $400. and the MRI people wanted $2000. from us upfront, so we went to our community hospital same deal ins. $400. $2000, upfront from us. Now I've been paying most everyting out of pocket due the insurance crap, figuring my wife doesn't have time for the arguments wit ins, and I can take care of ins. co. after my Wife is taken care of. But no MRI.
So I said the hell with this were going to go for a 2nd opinion but a second opinion out of our county, mainly because I didn't want to get a 2nd opinion from a doctor that was friends of our 1st doctors (the good ol boy syndrome)
We went in for a second opinion at out of County Doctor, the doctor explained why right now lung removal wasn't an option, he listened to my therory, said it wasn't good idea righ now and explained why.
I explained the situation with our insurance, said he wasn't worried about that right now he was concerned about My Wife. There is programs for situations like these, yesterday the social worker(?) from the hospital spent a couple hrs filling out papers for ssi, disiability, medi-cal. I explained thats why I got health insurance been paying for it for years, so when we did run into health problems we would be covered.
Yesterday, Tuesday we went in for the MRI test, another blood test, and radiation simulation test. She starts radiation treatments this coming Tuesday, five days a week for six weeks. And she got declassified from stage IV to stage 3B.
If the insurance company wouldn't have given me so much grieve, I probabaly would not have insisted to my Wife to get the 2nd opinion. And the 2nd one I believe is where the best care for her is.

Thanks for letting me Share
John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

John, I can definitely sympathize with you about horrible insurance. I also had to apply for financial assistance at the hospital where I was going to be treated or I wouldn't have been able to get the chemo I needed. The counselor at the hospital was a blessing, she filled out all of the necessary paperwork for me and submitted them to Social Security and Medicaid. I was approved immediately and was able to start treatment on schedule. If not for this "angel" I don't know what I would have done. The big insurance companies don't care what happens to us, just want to get their money so they can hand out ridiculous bonuses to all of their over paid big wigs. Sorry but I don't have a good opinion about a lot of the insurance companies even though I am sure they are not all bad.

It is very encouraging that your wife's cancer was downgraded to 3b. I have 1A NSCLC and T3 N0 M0 squamous cell laryngeal cancer. I am in remission now and doing good.

Please post again to let us know how you and your wife are doing. If you have any questions or need advice this is the perfect place to come. There are many, many great people on this site who have been through the same or similar treatment as what your wife is going to be having and they are always here for you when you need them. Even if you just need to vent we will always listen.

Take care and stay strong.

My best to you and your wife,
Glenna

Lil Buddy
Posts: 6
Joined: Mar 2010

We went in to see the cancer Doc. yesterday, they had planned on just radiation, but he informed us that it was going to be chemo and Radiation, One week with chemo and Radiation three weeks with just radiation and then one more week with chemo, and final week of just radiation. For a total of six weeks of treatments, five treatments a week.
She went in for her 1st treatment of radiation yesterday. Then again today. Chemo & radiation. starts monday.
We asked why the chemo? And were told, the chemo weakens the cancer cells giving the radiation a stronger whack. Without giving real strong dosages of either. Plus the radiation can only be directed to where it is aimed and can't get to any unforseen cancer. Chemo goes throughout the body attacking cancer along the way.
They don't believe she's going to have trouble with her asphotogics(ha ha spelling) getting burned from the Radiation, because of where the tumors are located in her lungs. They also degraded her again down from 3b to a shakey 3A. This is the only time that I would let my wife be degraded.
I'm new to this and I'm learning stuff in a hurry, I guess I'm simple minded and things that I don't understand, need to be explained to me where I can understand. So I suppose I'm posting for the benefit of oher simple minded folks out there

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Happy to hear your wife has been downgraded to 3A, don't know how much difference there is from B to A but anything is good. You are not simple minded, very few of us know very much about cancer and the treatment options until it strikes us or a loved one. There is a lot to learn and a lot of BIG words that most of us have never heard of before. It is a learning process for all of us so never, ever feel that you are stupid. We all were, unfortunately cancer gave us an education that few of us will ever forget. Keep posting with updates on your wife and ask any questions you want, someone on this site has either had the same experience or one similar to what your wife will be experiencing. There are many great people on here who will help you and your wife with whatever information you need, or if you just need to vent, we are here to listen.

I also had chemo (cisplatin) 2 days a week in 3 week cycles plus radiation 5 days a week for 7 weeks (on my larynx) but did the Stereotatic Radiosurgery for my lung. With this type of radiation I only had to go for 4 treatments. My tumor is on the pulmonary artery so the doctors decided the more targeted radiation treatment was the best for me. My tumor was small and I think that had something to do with their decision. Whatever they decided seems to have worked as I am now in remission from both cancers.

Chemo is not a pleasant treatment, but then again neither is radiation, but it can be very effective. I had lost my voice due to the laryngeal cancer and after two days of chemo it was back almost to normal. My onco doc said it was the chemo working. He said cisplatin is the big guns in chemo and I agree. We were both surprised because I never lost my hair, I told him I didn't care if all my hair fell out as long as the treatments worked.

Do you know which chemo drug your wife will be receiving?

Please post again so we will know how your wife is doing. Stay strong and stay positive.

My best to you and your wife,
Glenna

Lil Buddy
Posts: 6
Joined: Mar 2010

They will be starting her off with Cisplatin just for tomorrow, and then vp16 every day for Chemo portions of the treament...tomorrow is supposed to be her longest day of treatment.
John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

John, happy to hear that your wife will be starting her treatment tomorrow. The treatment can be rough at times but it is all worth it. I know how relieved I was when they finally started my chemo and radiation as I finally felt that we were doing something to fight this horrible disease.

I had Cisplatin also but don't know anything about vp16. Is that done through and IV or is it a daily pill??

Take care and post again so we will know how your wife is doing.

Stay strong, Glenna

Lil Buddy
Posts: 6
Joined: Mar 2010

How we found out about the cancer, was my wifes feet and ankles became swollen, went to emergency, did chest x-ray hello cancer. But she was retaining water, causing swelling of feet and ankles. So they gave her a prescription that makes her tinkle a lot. Can't remember the name of drug, if I could wouldn't be able spell it.
Today was supposed to be 3rd day of chem and radiation treatment, ended up just radiation. She was dehydrated,we were told to drink plenty of fluids, which she has been doing, that its really important. When she walks you can hear water sloshing around.
So when they told her that no Chemo, that she needed to be hydrated, that what she thoght was only going to be there for a total 1 1/2 hrs. now has turned into 4 1/2 hrs ordeal/ I felt so bad for her, the look on her face. Since chemo started last monday she's had some long hrs. Plus we live in another county so its another hr. ride home.
We see her ono Doc. tomorrow hopefully they can come up with some kind of happy medium for the tinkle pill and keeping her hydrated.
Don't want anyone to think that we...or should I say ME whinning I'm just sharing. I think shes in good hands and I'am very thankful for that. I do believe shes/we are going to pull through this nasty deadly illness. We still have plenty of things were going to do.
John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

John, hydration is one of the most important issues, along with good nutrition. I realize you are in a "catch 22" situation since she is also on "tinkle" pills. I'm surprised they didn't hook her up to an IV and rehydrate her so she could have her chemo. Hopefully they will resolve this issue soon.

I can completely understand the sloshing when she walks - I was supposed to drink at least 8 glasses of water a day plus was getting my nutrition through a feeding tube which meant taking in more fluids. Some days I would feel sick to my stomach from getting nothing but liquids, my body wanted solids but I was unable to eat anything for several months. Your wife may not experience this problem, I did because of the 35 radiation treatments to my throat, everything tasted so bad I couldn't stand to eat solid foods for a couple of months. No matter what side effects she gets, tell her not to give up or get discouraged as these will all pass in time. Life does get better post treatment ;-)

You are not whining, even if you were you have a right to. Cancer affects more than just the patient, it involves the entire family and a lot of friends. You will also be on an emotional roller-coaster so please be sure to take good care of yourself or you won't be able to help your wife.

I was very pleased with your last paragraph. It is very important to have faith in your doctors and trust what they are doing and your attitude seems to be a positive one. I also believe your wife will pull through this and you will have many more happy years together. I am a firm believer in a positive attitude, my radiation oncologist said he believes my attitude played a large part in my recovery. He is amazed at how well I am responding to my treatment since the original prognosis was not very encouraging.

Please post again with updates on how you and your wife are doing.

Take care and stay strong,
Glenna

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

The only time you will let your wife be degraded? That is funny! It is exactly that sense of humor and attitude that will help you and your wife get through this. Got to laugh!
As to simple-mindlessness...BAH! The only stupid questions are those that haven't been asked, and I ask plenty of them! Good luck to you and yours and Welcome!
Medi

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