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Husband dx 1/31/06 State IV NCLC and 12 brain mets


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My husband had a seizure on our vacation in Florida and thats where we were told the news. They did cat scans, mri and biospy. Lung cancer on the left side and mets to the brain. Large cell lung cancer The largest brain met on the left too. His seizure was on the right side and effected his arm and hand. When we arrived back home in NC, went to cancer doctor and then made appointment for 10 whole head radiation treatments. This Thursday will be two weeks since his last radiation. Lost his hair and finally weaning him off those steroid pills. They really helped but side effects bad.

He now has muscle pain in his right lower calf but gets better through the day but never goes away completly.

We go March 23rd to have another mri on brain to see what happened. 11 tumors are small but one is quarter size and dr. says thats large. I'm not sure what a quarter size means. Anyone else have an idea.

He does not want chemo of any kind and signed a living will.

He really seems fine now (a little tired) and it's hard to believe he has terminal stage iv cancer.

He wants quality of life thats why he wants no chemo.

Thanks for reading and if anyone can give me information on tumor size I would appreciate it.

God bless all of us,

Linda

DX 1/31/06 Stage 4 large cell lung cancer/mets to brain (12 tumors)

Cat scans

MRI

Biospy on lung

Whole head radiation (10 treatments)

2 weeks later lost hair and head peeling

Weaning off steroids

The week he took one steroid pill a day, he had headaches behind his eyes and felt very weak..

2/14/06 Very weak, right hand shaking and he's afraid it's a seizure, went to dr. and they started him back on steroids 3 pills a day. Felt better within 4 hours.

MRI machine broke down. So his MRI for the brain will be Sat. 3/25 and dr.'s on the 28th for the results.

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Linda -

Welcome to the site. I am sorry you had to find us. I understand your husband's wishes...yet just want to mention that chemo has come a long way -- and the drugs used to treat side effects are amazing. There are more "gentle" chemos. It sounds as if the cancer has spread very little...and if the radiation helps decrease the mets...he may want to reconsider -- just a thought...at the end of the day, it is obviously his decision. There are many people who aer stageIV who have continued to do well....

I am sure you will hear from people on the site who had a similar diagnosis -- they will tell you what if any treatment they went through....and the results.

We are all here to support you on this journey.

With love,

Holly

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Linda,

I am very sorry you have a need to be here. Please don't assume chemo will give him a poor quality of life-- it may be just the opposite. Has he had radiation to the tumor in the lung? There are many options open to him. Welcome to the board, keep us posted on how he is doing.

Rochelle

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Hi Linda:

Welcome to our family. I echo everyone on the chemo treatments. My husband did not have any harsh reaction to chemo. The worst was low reb blood cells but they fix those quickly with blood transfusion. Other than than it's very well tolerable and there's nothing to be feared about. Oncologist monitor thier patient very closely for side effects and stop it if there is a slight sign of bad reaction. My husband comes in for blood check up 3x a week. Tell your husband it's worth the shot. Hey, at this point in life, everything is worth trying. I respect everybodys choices; just my 2 cents.

God Bless,

Love,

Malou

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Hi Linda,

I will echo those who have all ready responded. First of all, welcome, although I wish you didn't have to be here. Please know that this group is supportive, caring, intelligent and we all want to fight this disease together. My husband went through chemo and virtually no side effects except a little fatigue right after chemo and hair loss. The drugs really have come a long way.

You'll be in my prayers

Sandra

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Hi Linda,

So sorry to hear of your husband's diagnosis. I've been there unfortunately. It's crazy, but I need to tell you about chemo and that it's really not as bad as I thought it would be. Not to say it's a walk in the park, but certainly worth going through. Looking back, I would compare it maybe to a very bad case of the flu, the worst part being that I couldn't taste my food. I love to eat! Everyone does react differently remember. However bad it may have been, I've been really enjoying my life for 10 months now, and hope to continue a lot longer. Without the chemo, I probably wouldn't be writting you today.

I really do wish you the best.

Joan

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Dear Linda,

Your husband's diagnosis rings sooooo familiar. My husband was diagnosed with 8 brain mets, but didn't have a seizure. He was having a severe, constant headache for about 3 weeks, got an MRI, and BINGO, there they were! He also only had one lung tumor, left side, and his largest brain tumor was on the left side.

His largest brain tumor was 2.2 cm., a little bigger than a quarter, several others were about half that size, and the others were very tiny. WBR with stereotactic radiosurgery about 2 months later removed two small tumors and shrunk the rest of them by 30%, and they stayed stable for over 18 months.

Linda, my husband had a lot of chemo over nearly two years' times. The first round knocked him on his butt for a couple of months, but he rebounded with a little kick start with steroids, and continued to have a better-than-excellent quality of life for almost two years. He worked long hours, kept up with everything in our home and yard, and even took motorcycle trips, including a lengthy trip to the Smokies.

I understand your husband's reluctance to receive chemo, but the drugs they have these days to help with nausea, low blood counts, and other side effects are phenomenal. Yes, some still have a hard time with chemo, and there are about a gazillion different reasons why that happens - other health problems, overall health, attitude, allergies and reactions, etc., etc.

Please tell your husband that he will never know if he is one of the ones that would have a very positive result from chemo if he doesn't try. The end result without treatment is a given. Of course, that time could be long.

I had two wonderful years with my husband after diagnosis, including many meals at home, many meals out, lots of laughs and good times, holiday with families, birthday celebrations, a lot of loving and sharing, and memories that I will cherish forever. And, memories I'm sure he is happy he left behind. Believe it or not, even all the million trips to doctors and for treatment hold a lot of good memories for me.

This is, of course, your wonderful hubby's decision. Many choose the path of no treatment, and all of us here will support his decision, support him, and support you no matter what. We're here for you!

Much love and many prayers,

Peggy

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Welcome Linda. So sorry to hear about your husband. What a shock for you. I am concerned about the pain he is having in his calf. What did the doctor say? Blood clots are a commom problem when you have cancer particularly lung cancer. Sometimes what you descibe can be the symptom. Is he on low molecular weight Heparin shots into his abdomen, that is the best treatment for clots with lung cancer. Hope I am reading too much into that leg pain. Keep us posted. Donna G

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Welcome Linda, I am so sorry for all you guys are going through.

Like you have seen on here so many times. Chemo is not so bad. My husband went through it with no side effects at all. Perhaps he should maybe look into it some more before he makes his final decison. But whatever decision he makes you have to respect whatever he wants.

We are here for your Linda for support 24/7.

Maryanne

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Hi Linda and welcome to our close family. I was given one year 32 months ago. I am still working full time, fishing as often as I can and truly enjoying my new normal life. As you can see from my profile below, I have had a few Chemo treatments and as others have said..."it ain't all that bad" I have never missed a day of work due to chemo side effects. We are all different and your husband may respond differently, but I would urge him to reconsider, talk with his ONC and "NOT GIVE UP". There is lot of live yet to be lived..."One day at a time".

The early weeks following diagnosis are by far the roughest and scariest and then it does get easier...believe me.

Please keep us informed and we will be here for you and your husband.

jim

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Welcome Linda and sorry to hear about your husband. Please don't assume chemo will give one a poor quiality of life, I have been on chemo now for 39 months. Not saying it is easy or life is the same but I still have a life. I'm at Stage IV and do not consider myself terminal. I'm living with lung cancer, not dying with lung cancer. I found the more I research. know and understood really helped. Also try being positive, pro-active. Take it one day and one step at a time. Bottom line it is really up to one to decide and one must respect that. Stay with us. Keep us posted. Hope this helps. Rich

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Hi Lindy

Welcome!

My dad is going through the same thing. He was diagnosed in November and they did the whole brain radiation. The plan was to do chemo after the radiation to the head. But the radiation to my dad’s tumors did not do anything at all (which the doctors say is really rare) so they have decided not to do any chemo at all and just work with medication and Palliative care.

My dad was of the same thought and did not initially want chemo but was willing to try one session before we found out that it was not possible. When I originally spoke to my Dad about trying the chemo I told him about how far advances have come that chemo is not as bad as it used to be and that they have all kinds of new meds to counter act symptoms. This helped and he was willing to try it.

So don’t give up!

Trish

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Hi Linda,

I am so sorry to hear about your husband. I think you've already received a lot of good advice about chemo, so I won't add much other than to say my husband has received almost 3 years of chemo and yes, he has had exhaustion and nausea, but it was controlled well with meds and he has still had a lot of good times and joy in life. I know that without the chemo he would have left me a long time ago.

My husband also has over a dozen brain mets. He received 20 rounds of Whole Brain Radiation. It has kept his mets stable for over a year. IF they start to grow again we will consider gamma knife or steriotactic radiosurgery. At about the size of a quarter, the concern is that it can cause symptoms such as the seizures, vision or balance problems, emotional or cognitive confusion. In my husband's case his mets are smaller and not causing any symptoms. But just because they are larger does not mean they can't be reversed and cured. Every person is different, and every person has the possibility of being that person who beats this damn thing.

In our case, the WBR caused a lot of exhaustion and it did take a long time to recover from it. In fact it was harder than the side effects of chemo for him. But radiation has always worked well for Keith. I pray it works really well on your husband too.

Also, make sure to talk to your oncologist about the pain in his calf. It may be nueropathic side effects of the radiation or blood clots or just a small problem with hydration, but it is better to be safe than sorry.

Warmest wishes and all kinds of prayers being said for you both. Please visit back with us, and let us offer you support, knowledge, experience and lots of love.

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Chemo and radiation are not nearly as bad as a lot of people think. Deb started Chmo almost 3 years ago. She worked when she wanted to, Even had the strength toattend art classes at GTCC for a while. When she was getting Radiation Treatments she actually painted the inside of our 1300 sqft home except for 1 bedroom. She had that much energy. Will be praying for you. I am in Greensboro NC. We went to Wesley Long Regional cancer center.

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Hi Linda,

I am so sorry you need us, but glad you found us. My

husband had 1 large brain met. 3.0cm x 3.5cm. Alan

had 10 WBR treatments then 15 IMRT treatments to the

tumor itself. Alan's tumor was found in July 05 and both MRI's since then have been clear. The tumor is

completly gone. I hope this information helps.

Many prayers to you and your husband

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Sorry you had to find us, but welcome, Linda. I, too, wanted to say that chemo shouldn't be dismissed so easily. I can honestly say that I did not have even 1 day of nausea and I've been doing chemo for the last 6-1/2 months. The meds available now work amazingly well. Also, the symptoms I was displaying before starting chemo/radiation (coughing, coughing up blood, excess mucous) have gone now, and I hate to think where I'd be if I hadn't started chemo.

You and your husband are in my prayers.

Trish

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