Joels visit with the Onocologist

[Maryanne]

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.....

[cindi o'h]

Hi Maryanne,

Thanks for the update on Joel.

Sounds like you have a good team working for you and with you. I had carbo/taxol too. It does kick some butt. Also, I had a drug called Taxotere that didn't kick quite so hard for me.

Is Joel going to have any radiation?

Also. Just a side note.. the Xanax has its place in the medicine cabinet to be used on occasion. It is not an anti-depressent. It is an anti-anxiety medication. His oncologist or internist should be asking about depression and if Joel is resisting they may tell him how common situational depression is with the diagnosis of lung cancer. Should he become more depressed it would just be more difficult to pull him out. Try different approaches and see how you do.

Could you interest him to come here to help fix US up a bit? He sounds like he would be alot of fun...! We are better than Jerry Springer.

Good luck, Maryanne! hang in there. keep coming back.. We all care about you and that husband of yours.

Cindi o'h

On a lighter note: GGGGGGGOOOOOOO VIKINGS!!! (who are the Eagles?)

[ginnyde]

Maryanne,

A couple of notes from my experience. A little bit of nagging is needed. Call from work and just whisper 'use your breathing device'. I gave Earl an Ensure milkshake with 3, yes 3, scoops of ice cream every night when he was having trouble eating. I was full of nutrients and calories. He did gain back most of the weight he had lost.

And the Eagles should not be mentioned in a lighter note. This game on Sunday is serious business.

GO EAGLES!!!

[chloesmom]

I think the nutritional advice is right on target....lots of protein, lots of small meals throughout the day.

The thing my chest surgeon said time and time again was to push the walking and the spirometer. That would be the only way to regain normalcy in terms of activity. I did follow that advice and he, of course, was absolutely right.

But, in order to do that, pain has to be controlled. I took tylenol with codiene when I got home from the hospital and that did the trick. He's still not that far out from surgery, but he needs to get that pain under control.

There's also that state of mind factor....xanax is fine for occasional use, but in order to keep that seratonin level in the brain where it should be sometimes anti-depressants are the only thing that will help.

I hope things continue to improve for Joel....keep us posted.

Cindy

[Frank Lamb]

Maryanne, I had that same chemo and my hair thinned but I never lost my hair.Also it was a little hard for me to do but it was worthwhile.

The bad news is the STEELERS are gonna do em all in.

[shelliemacs]

see if they will give his anti-depressants to me i swear by mine and wont'' come off of them.

The voice thing, my mom had. her tumor pressed against her vocal cords and esophagus and thats why she went horse.

her tumor disappeared the first time with carbol/taxol.

its great knowing you have so many devoted people on your team now too.

[Maryanne]

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??)

[Guest gre1]

Maryanne,

He needs to get moving. 1BN0M0 and surgery that went well! I for one think he should be jumping for joy. Life does not miraculously return to normal, it takes work and not all yours. Walking and breathing are key to physical recovery. Getting back to your normal rituals, routines and activities are key to emotional and psychological recovery. I'm no pro, but I know cancer. I am exactly 1 month ahead of him and I lost 2 lobes in a what was also a very difficult surgery. We all heal at different rates, but at 4 weeks I was out and about doing what I needed to do. I drive myself 30 minutes each way to radiation every day and shoveling the snow the other night made me feel like a million $$. Once he gets going he will make daily strides, but he needs to get going! I did the Taxol/Carbo all summer, he'll do fine and the hair comes right back!

Good luck,

Glenn

[cindi o'h]

The chemo doesn't really hit for a day or two after the infusion. Then he will probably feel pretty punk for a day or two and gradually come out of that.

Each time right before his next infusion, they will draw blood and check all levels thoroughly to see if he can withstand more. If he can't they will either wait or treat him to get him perking along again.

The chemo is cumulative. Each time he gets it he will feel a little more rotten. By the time he is done, he should be begging for mercy. Least, that was my experience. But, I had a bunch more than what Joel is having....

Did you see the $5,000 moon that Moss gave to the Packers? It was worth every penny .....(of his). OOOHHHH those Packers... they think they are all that.

[Don Wood]

Thanks for the update, Maryanne. Usually on the chemo, the first several days are okay, then it hits. That can last over a week. The third week should be a good one. Don

[Wendy]

I had a similar experience with my voice after surgery. During my surgery I had nerve damage in my vocal cord (left side) that caused paralysis. It happens in approximately 5-10% of patients that had the entire lung removed. Basically what happens is that since my one vocal cord isn't working correctly, I need to use more air to force my other vocal cord to vibrate in order to project sound in my voice. Needless to say my voice goes up and down depending on how tired I am. Raspy, low and terribly ill sounding was my normal for a while.

I was told that typically if there was damage such as mine, many times the paralysis is temporary and sometimes fixes itself in about 6 months. Mine didn't and I had a temporary fix where an ear,nose,throat doc injected my vocal cord with collagen and it helped alot. The injection usually works about 6 months. Note that I had the temporary fix not only because of the vocal cord voice problem but I was also having swollowing/major choking problems with my food because of it.

My damage hasn't repaired itself on its own and I will be looking at a permanent fix here in the next month. Please know that the problem isn't a serious one if this is Joels issue, more of an aggrevating pain in the neck type of problem.

On the pain killers, I coiuldn't tolerate alot of the pain medications and ended up on oxycodone (or oxycontin - cannot remember which - I tried both) and that seemed to help eliminate the extreme nausea. The other thing that I received was Zofran for the nausea. Zofran is a pretty expensive drug and they don't always give it out easily, but it the nausea continues request it. You can use the Zofran as a primary drug and then on really bad times add the compazine.

Best of luck, Joel will feel better soon.

Wendy

[stand4hope]

Hi Maryanne,

I don't have anything to add to what the others have said, but just wanted to wish Joel a quick recovery time and that he gets his strength back real soon.

Love,

Peggy

[stand4hope]

P.S. I forgot!

GO COLTS!!

[Kaffie]

Maryanne,

I had the Taxol/carbo cocktail and I am currently on the Fentanyl pain patch for arthritis.

The chemo was hard on the joints and I was wiped out, slept alot and spent most of the rest of the time in a recliner watching TV. I had my last treatment last month and I'm feeling much better now. I read somewhere that it takes a month for the chemo to work it's way through and out of the body.

The Fentanyl pain patch is great, beats the heck out of pills because it kills pain and you don't have the ups and downs like you do with pills. It's a steady dose and I don't feel like I'm on "drugs". I am on 75mg but the doctor starts you on 25 and works up if needed because it's pretty potent stuff.

Kathy

[ljdub]

As you can see from my profile, I am 9 months out from surgery and still don't have my normal voice back. I guess I'm thinking I never will at this point. Mine also got deeper, and raspy a lot, especially the more talking that I do. Unfortunately I have to speak in front of large groups fairly regularly, and even with a glass of water by me constantly I find my voice getting more and more raspy or even giving out. My surgery also was only for the lungs rather than near the vocal chords, except I did have a mediastinoscopy to determine involvement of the lymph nodes in the mediastinum/hilar area. The raspiness didn't seem as bad after that smaller surgery as it did after the larger one when they removed the lobes, but maybe it was cumulative? I have been putting it down to the tubes they put down your throat during surgery and just figured maybe for some percentage of patients the irritation/damage to the vocal chords is permanent. I could be way off base, but that was my thought process. I see my oncologist Tues for the 2nd scan since I finished treatment and I've felt pretty normal for a while now after finishing chemo and radiation, but I plan to ask him about the voice, hot flashes, achy joints and other assorted things that seem new since all of this began! Also, I can tell you, I stayed on the fentanyl patch for months after finishing treatment - it was so effective and didn't make me sick or loopy like vicodin or percoset, but it allowed me to get back to work and even feel pretty human during the long healing process. I thought it was a miracle how much better it would make me feel when i was still recovering from all the assaults on my body. Hope all this helps answer a couple of your questions - other answers will follow if I get any! Best wishes to Joel and to you!

[Maryanne]

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)

[Ry]

Maryanne,

John did ok with the chemo Joel is going to have. He felt fine the day of the chemo but about the third day following he was down for the count for a couple of days and then ok again. I took off work on chemo day to go with him, and I would check on him from work afterwards. Now he had his chemo in the summer when our kids were home so my daughter would give him soup. Mostly he just wanted to sleep. So the answer is yes, I think you can get away with just taking a couple of days off.

For the leg pain we found that drinking lots of water helps. Drink it before the chemo, during, and after. It will help.

Also, John's hair thinned but he didn't lose it. I wish you all the best.

Rochelle

[teresag]

Maryanne,

A raspy voice after thoracic surgery is fairly common; there is a nerve (recurrent laryngeal nerve) that can be damaged inadvertently in the surgery.

More info here:

http://www.drkoop.com/ency/article/001643.htm

Two things I would investigate re: the fast heart rate are his fluid status (is he drinking enough water?) and pain control. The fentanyl patch can be great, but remember it takes 48 hours or so to kick in, so once it's started, keep applying a new one as prescribed.

Best wishes, Teresa

[cindi o'h]

Hi Maryanne.

That high heart rate business...that in my opion should be evaluated. I had tacchycardia for awhile. Beth (justakid) did too...they thought she might have an embolism and so she was evaluated for that but it thankfully turned out not to be. I hope that you will call his doctor and get some feedback on that one.

I had leg pain with the chemo. My leg bones ached. That was not fun.

PURPLE PRIDE...!

Cindi o'h

[chloesmom]

Maryanne,

I had my chemo treatments on Thursday and felt great on Friday. When I needed to rest was Sat and Sun, so if you feel you need to be home with Joel after chemo, why not try to schedule the chemo for Thursday (if you're off on Sat and Sun) and then he should be fine on Friday and you would be around for the next couple of days.

I also found that mostly I just wanted to rest and wasn't very good company. I'd think that you could just continue on with your work and check by phone with Joel a few times throughout the day.

I also drove myself to and from chemo.....that's not when you get sick, if it's going to happen.

Sounds like that rapid heart is the first thing to get fixed.

Good luck....nobody wants to do this chemo thing, but it is doable. It's just important to take extra care of yourself during that time.

Cindy

[Guest gre1]

Maryanne,

I'm glad my post helped. We are all different, but chemo was not too bad. I had 4 or 5 rounds 3 weeks apart. During my 5 hours I sat in a recliner and watched TV. I got myself to treatments on my own, using the train or driving. The treatment itself, and the next day or two, were no problem. Day 3 and 4 I would have some joint pain and by the end of the week I felt fine. I was so worried about chemo and now I wish I had done it when I first got cancer in 2002, maybe I would not be going through this again if I had. Do not worry about it, he'll do fine.

On the $ issue. If he worked he should have a shot at SSDI. You can get this even if you are getting sick pay from your job. His eligibility started the last day he worked and that date is in stone. There is a 5 month wait so any delay in applying will not be an issue since the date of disability is already set.

This all assumes you can get approved, which for us requires that the disability will last 12 or more months or, the disability is terminal. Obviously, the 12 month recovery deal is the more pleasant choice. The thing with Joel is, that with his staging he is much more likely to make a full and complete recovery than most of us. As well as I feel, my diagnosis makes me an automatic approval for metatastic head and neck cancer. They have a book with the guidelines, if you fit the rules you get approved.

Glenn

[chloesmom]

Maryanne,

If Joel was working before this surgery, and he gets that heart rate thing under control, why can't he plan to get back to work sometime soon?

Those of us like Joel who were lucky enough to have an early stage diagnosis, have been able to return to work rather quickly, and I know that for me, it was about the best thing that happened to speed along my recovery. It was definately about pushing myself, after I got the go-ahead from my surgeon, but I got better quickly after I returned to a normal routine.

Cindy

[kiams]

Marryanne,

The infusion days for me were pretty easy. I would spend six hours at the infusion center on the days I received both drugs (cistplatin requires lots of irrigation). The biggest problem I had was boredom. I would bring my laptop computer and watch movies. I always brought comedies to take my mind off what I was doing. The fatigue always hit me on the second day. I would usually be wiped out for the first couple of days after the treatment, and then would slowly recover. After a week I usually felt pretty good. Its just important not to over do it. I learned early on it that if I pushed it, it would just make the recovery longer. Also ask the oncologist about Emend. It’s a new anti-nausea drug that worked wonders for me. I never got sick or nauseous during my treatments

[Maryanne]

Hi All,

Of course as usual thanks again for the feedbacks.

Joel actually works from home on his computer. He owns 2 web sites that his gets some income from. But right now not enough income. My salary with Medical, a miniVan with Insurance and gas paid by my company helps us to make ends meet. My kids are grown and out of the house.

But I do have to work. I am a sales rep and I have to visit my stores. Being a sales rep gives me freedom to make sure I can call on the stores that are close to my house if need be. I can take off early and no one would know the difference. I am lucky about that part.

I will talk to the doctor about trying to get his chemo on a Thurs. He will be going to Cooper Cancer center which is only 8 blocks away from our home. So we are lucky for that also.

I am just still concern about his being so fatigued. I really have to get him to walk instead of couch potatoing all the time. Or a least try and get him back to his computer to work somewhat.

He could not twist the cap off a bottle of Boost. He actually used a wrench. I have no trouble getting the cap off. I can't believe that he is that weak. But now with the advise from his nutrititionist , hopefully,this will change as he starts to eat.

Like I said before, he is going to get a eckogram on Monday to see about his rapid heart rate.

One other question, do you see any difference between generic and non generic percocets. I had to finally go to generic as of todays perscription as the orginal was costing me too much money and my ins. will only pay a small amount of money for brand if there is a generic available. So this time I got the generic. It cost me $5.00 for 120 pills compared to $150.00. I hope these pills work the same it is Oxycondone which is the generic for percocet.

I did get him the Fentynal patch which he probably will not need as many pain pills now.

Thats all for now, take care all and I thank you from my heart for all the input you give me with my postings.

Be good to yourself,

Maryanne