[Joels visit with the Onocologist]

HI All,

Thank you as always for your posts.

I am concerned about his heart rate flucutuing up to 137. He is having a ekcogram on Monday at a Cardiac office.

Glenn, I printed out your response and gave it to him as you were very close to what Joel was disgnoised with. That seems to help him and is giving him the motivation to use that breathing device.

But last night I almost lost it. We were watching Joan of Acradia, and I started crying. I was so upset with myself, doing this in front of him. I blamed it on the show.

I just feel so bad for him and I know he is upset about the up and coming Chemo. That is what I was thinking of when the tears happened.

I had no idea that each session would take 5 hours. I can't imagine what he will be going through there.

I am also concerned about how much work I will have to take off. Right now Iam the only source of income. My company has been wonderful with the time off I took with his operation and his recovery. But I am back to work now. I can put in for FMLA (family medical leave) I really do not want to take a lot of time off unless I really have too.

I had no idea that the Chemo would be once every three weeks. He would need 4 bouts. Could I get away with taking off just a couple of days after the Chemo?

I just don't know how to handle it. I certainly do not want to leave him when he is feeling so sick.

Any suggestions?

Also with Carbo/toxal I read you can get leg pain. How long does that last for??

Thanks for you help. I wish you all a great weekend.

Maryanne

GOOOOOOOOOOOOOO EAGLES!!!!! Right Ginny and my Philly, South Jersey people, and to Cindi (Culpepper who?? Moss is a real P in the A our defense will destroy him)

[Joels visit with the Onocologist]

Hi all,

Thanks for your input.

Joel raspy voice is not from a tumor near his esphasgus. His tumor was taken out of his lung.

Also, Iam trying to find out from those of you who had the Carboplatin/Toxal how long it took for the fatigue to leave. If he is getting 1 round every 3 weeks, will he feel fatigued the whole time?

One other question: for those of you who used the Fentynal patch, did that work for pain?

Thanks

Maryanne

GOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

EAGLES!!!!!! ( whose is Culpepper??)

[Joels visit with the Onocologist]

Hi all,

This was Joel's first visit. He met with the Onocologist nurse, hematologist oncologist, the chemo oncologist They were incredibly supportive and attentive to his needs. They even brought in a nutritionist to help him with his eating.

He went from 178 to 155 lbs. He just does not have an appetite. The nutritionist told us to bring fiber into his diet such as fruit, salad, fish, chicken, tuna, eggs, peanut butter and cheese. Also protein drinks.

I do make him a milkshake every night, which is good.

She also said that canned fruit cocktail is good.. She said instead of eating 3 large meals to try and eat something every 3 hours. Maybe a half of tuna sandwich, then a couple hard boiled eggs, protein drink, fruit, the other half of sandwich etc. If he can do this different times during the day, it would increase his metabolism.

His heart rate has been accelerated, which they do not know why. He had those two x-rays on Monday to make sure there was no blood clots. Those test came out negative. His heart rate fluctuates up to 137 which is scary.

He is scheduled for a Ecko of the heart on Monday.

They want to start Chemo, when he is strong enough. So he has another appointment in 2 weeks. They want to do 4 treatments. One every 3 weeks. The chemo they use is Carboplatin/Toxel. I know he will lose his lovely mane but so be it.

He seems to be getting nausea from the Percocets, they recommended he try 25 mg of the fentynal patch and to use the percocset if he happens to feel more pain. They also gave him a scrip for compazine for the neusea.

Since the operation, his voice has changed. It is lower and more raspy. They didn't seem to have any reason why for that, even though they are concerned.

Has that happened to any of you?

I guess that is it for now. I just hope he gains his appetite and strength back.

He still is not walking or using that damn breathing thing like he should. Even though he knows he should. He will do it when I tell him, but now that I am back at work, I am afraid that he will ignore that.

They did ask him if he wanted any anti-depressants, but he refused. He said his has the Xanax if he feels he needs it.

Anyway the is the update for now.

I will appreciate any feedback. I hope eveyone had a good week.

regards

Maryanne

ON A LIGHTER NOTE: TO ALL YOU PHILLY FANS.... E-A-G-L-E-S...GOOOO

EAGLES!!!!! To all your minnesota Vikings fans.....

[My first WBR experience]

Hi Cheryl,

You are very brave.

But as Iam new to this, what is WBR? I imagine that is some kind of radiation.

best wishes, Bless you

Maryanne

[Thank you all again!!]

Cindy, thank you so much for that information. Wow, you really have been through so much!!

Please take care,

Maryanne

[Thank you all again!!]

HI all,

Andrea, Dadstimeon (sorry do not know your name), John , funny Beth thanks for your feedback and as usual your good wishes. John you seem hesitant about the chemo in his early stage. You feel he should look into a clinical trial rather then doing the chemo route?

Cindy, Iam insterested in your story. You seem to have the same stage as Joel including having the upper left lobe removed. Iam curious to know how they caught it in you in an early stage. Also everything on your profile seems to end on Nov. 6, 2003. Have you been getting scans every three months? I imagine you have and its been NED. Which is very encouraging to me for Joel. Also how was the Cisplatin/Gemzar for you. Did you lose your hair or feel really neaous or fatigued?

Thanks all, I will keep you updated on his visit to the Onocologist on Thurs.

I just wish I had a recliner for him. Everyone seems to have one. He has been in our bed, sleeps on his back and sitting up. Iam sure he would have been more comfortable on one. Oh well, at least I have him near me.

I think I mentioned that today was my first day back to work. And he did fine by himself.

Also, I think the percocets are starting to make him a little sick now. Sometimes he vomits when he takes them. Maybe when we go to the Onolcologist he will change to something else.

take care you all, bless you

Maryanne

[Thank you all again!!]

Thank you for your posts, Ginny and Kate.

The reason he is opt to do chemo. is preventive. Even though he is "cancder free" right now. I just dont trust those beasts. There may be some too small to detect.

On his profile I had down left upper lung, I mean left upper lobe was removed. Which I just changed.

Also, his Pulmonist Doc. said that with the operation he has a 65% of being cured and with the Chemo it would be 70%. I like those odds.

Good luck to you both.

Getting ready to go to work.

Will keep you posted on what his Onocologist says.

take care

Maryanne

[Thank you all again!!]

Hi All,

I moved over to this NSCL forum, as you all have welcomed me and certaily made me feel comfortable meeting you all. I just wanted to thank you all for your imput and help. There certainly is a ton of infomation here as well as support.

Joel has an appointment with his Onocologist on Thurs. and they will talk about adjuntive (?) chemo.

This is his 3rd week since surgery, 2nd wk home. He had 3 X- Rays taken today, and did a lot of walking, which he certainly was not used too. He did really well (took an extra pain pill) But was absolutely exhausted tonight. Didn't use his breathing thing today at all.

I have to go back to work tomorrow as I have been off for a month. I hate leaving him, but I am confident that he will do fine by himself. He can always call me on my cell if there is any problems.

I will keep you posted what his Onocologist says about the Chemo. This is one thing he is not looking foward too.

take care all...

Maryanne

[Hi new here]

Wow!! Thank you all so much for responding so fast. You certainly have very encouraging words for us.

His surgeon and his Pulmanary doctors are a little concerned about his heart rate, It seems to be a little excellerated. So tomorow he is having a venilation and perfusion scan and a Venus doppler on his legs, just to make sure there are no blood clots.

This has been 3 weeks since the operation. When do you think he will be somewhat pain free and off the meds? He really has not done too much walking. I try to get him to walk around the house but he mostly just sits on the couch. He does use that breathing thing, but again not as often as he should. He does know that it is important for his lungs to use that. I am hoping when he feels better that he will go to the mall to walk around, as it it too cold out to do that here.

To Ginny: Yes, I have met Heather on another site. She is a beautiful young lady with a good soul!! I told her next Novemeber that I would like to get involved with her run for LC.

To Gail, It seems a lot of people went to U or P. I went to Cooper Hospital and the Docs are great there. When Joel (my hubby) goes for treatment, it will be only a few blocks from our house at Cooper Cancer Center.

A couple of questions, what is NED? I see that on peoples profiles but can't seem to figure that one out. Also, adrenocarcinoma is not actully the smokers cancer, and non smokers get that type of cancer. Squmash (?) is directly from smoking, so why is there so much adrenocarcinoma?

Joel found out his biological father (whom he did not know) died of Lung cancer and he stopped smoking in 1959. He died about 8 years ago for LC and was battleing it for 3 years. You can tell by this site, that so many people have a history to LC in their families.

We have to have more research done to find out if this is heridary. I feel everything is somewhere in our genes. Why do non smokers get it, while some people are heavy smokers go to their graves without getting that dreadful desease? I am tired of, "smokers get this and they should stop smoking". Well, that doesn't seem to hold true in so many cases. People gave smoking up years ago only to come down with it many years later. Which they are finding out more and more today.

People have to be aware that it is the number l killer of both men and women. We desparately need funding, research everything like other cancers get.

Anyway, thank you all for your encouragement. I know Joel will be fine. He just has to have patience.....

On a lighter note: TO ALL PHILLY FANS OUT THERE

E-A-G-L-E-S....... GO EAGLES!!!!!!

Maryanne

[Hi new here]

Hi

I am Maryanne. My husband, was dx. on 10/18. He was stage 1B (tumor was big) but he had no signs.

He had hurt his back and we went to our primary doctor to see if he needed X Rays. Since we were both overdue with physicals, we decided set up the blood work while we were there. My husband who is a smoker, asked for a chest X ray. Like, I said he had no signs, in fact he really felt great. Just wanted an Xray because of the smoking....

The X ray showed a mass, then a CT and Pet was followed. It was big about 7ccm. His Pulmanary Doctor did a bronch. which showed up negative. But he did mention that the Broch. tube may not have got the tissues that he wanted as it was too big for that area. So that came out negative. So they followed up with a needle biospy which showed cancer.

He has a great team of Doctors. They work together as a team and have meetings on Wed. afternoon to discuss cases.

At first the surgeon thought he would have to take the whole lung. But fortunately. it tuned out to be just the upper left lobe. The operation took close to 7 hours, as it was lying on top of this aorta. They were not sure it if was attached to the aorta or on top of it. The surgeon had wait for the pathologist to tell them it was not attached. (whew.....)

He had to call in another surgeon and they both decided he could remove it. So it was done extremely slow and careful. They also took 2 biospys of his lymph nodes.

That was stressful, waiting for the results of that. That took about a week and a half. But that came out negative. So apparantely they got it all. I say apparently, because you never know with cancer.

He is going to have Chemo. as a preventive measure.

He has been home now 2 weeks and company has finally dwindled However, he is still hurting and still has trouble breathing. He is basisclly a very motivated person especially when people are around. But by ourselves lately, he seems to get depressed at times and hates the hurt and just wants it to do away. He lost about 15 lbs from not eating too much.

I keep telling him everything he is feeling is normal and how lucky he was to catch it in such an early stage.

He knows that, but it still frustrated and hurting. Now when I say hurting, I mean he is much better than he was when he first came home. He can cough now without too much pain. But it still hurts.

My other concern is, I hope he is not getting addicted to percocets. He has the least dosage, and was taking 2 every 4 hours but now he is down to 1, but sometimes takes it 3 hours because of the pain.

I just don't want him to get into any kind of funk... depression wise. He does computer work at home and has not touched it since he has been home. Is that normal? Is it just too soon? Is it the meds?

Iam afraid that when he goes on Chemo, he wont be able to handle the nausea.

Any feedback would be appreciated.

Thanks so much and bless you all!!

Maryanne