Recovering From Surgery 2-25-05

[Don M]

I had a left pneumectomy on 2-25-05. My pleural area and mediastinal areas were clear, as were the margins of my remaining left lung. 2 days after surgery my cancer was staged at Ia. It is not clear whether this was a new cancer or a recurrence of the original cancer. I had had an upper left lobectomy Jan 2, 2004. The latest surgery wiped out my left lung and hopefully, my cancer. I know for sure my left lung is gone, but I am not so sure now about my cancer. It was supposed to have been gone the first time around. I did not have adjuvant chemo after my first operation. This time I will ask for it.

I had thought that the operation this time would be about the same as last time, but I was wrong. The most significant difference was that I got winded just getting out of bed for the first time after surgery. The first readings that I got on my spirometer were right at 500. I had it up to 1000 before I left the hospital. When I went home last Wednesday, I had to use a 2 liter rate of oxygen for walking around. After the first surgery, I was walking around the block at a moderate rate without getting winded at the second week. I can barely make it down to the end of the block now at a slow rate without getting winded this time. Last time I had an urinary infection, this time I don’t (one good thing). Generally, the surgery this time was a lot harder on me.

I feel sad sometimes about losing my left lung, and the operation really whacked me, but I am grateful that I have had the operation and a second chance for a cure.

Today feels like a better day. I can get the spirometer up to just over 1500 now. I was able to walk upstairs without my oxygen without stopping, although I did breathe heavily for a while after sitting down. Today I have a post op appointment with my surgeon. I also am going to see the pulmonologist. The pulmonologist will evaluate my oxygen saturation to see if I have to continue using oxygen. My surgeon put me on a regime of Digitec for my heart. Apparently, my heart got confused upon the removal of my left lung. It sometimes will beat faster than usual to make up for the lack of readily available oxygen I guess. The Digitec is supposed to help my heart beat more strongly and more regularly. I think it makes me feel kind of sick a short while after I take it though. I tend to get chills, feel tired, have cramping and swelling. I am going to ask the surgeon about it today. I will be glad when I can shed the oxygen and the digitec.

I am going to have to accept a longer recovery period this time it seems. I have heard that after my neighboring organs adjust to the empty space in my left chest, that my right lung will eventually enlarge a bit. I hope to eventually be able to walk up hills at a moderate clip with short rests every 300 feet or so. After today I will go for walks outside every day and continue to suck on my spirometer.

I am going to call my oncologist tomorrow and schedule an appointment to discuss a strategy for chemo. I have had no experience at it. Do any of you have any idea what a typical regime would be for adjuvant chemo for Ia adenocarcinoma?

Don M

3-7-05

[Wendy]

Sorry to hear that you had to "donate" the balance of your left lung. As a fellow "one lunger" I know it isn't the funnest surgery but eventually you will be feeling much better. I think the biggest difference from your 1st surgery to your 2nd is the overall lung capacity that you started with each time. I know that over time my memory has faded a little at how BAD my actual surgery and recovery was which might maybe contribute to it seeming like it is worse this time around?

Either way, it sounds like you are headed in the right direction, walking daily. It will get better - Promise!

Take care of yourself and keep us posted on your progress,

Wendy

[kiams]

Don, I'm glad to see you are home and recovering. Also, it's good that the Cancer did not leave your lung. I was staged as IIa after my surgery because of some Lymph involvement.

For me they did four rounds of chemo--cistplatin and Gemzar. Each round involved 2 infusions. On day one I would receive Cistplatin and Gemzar. I would be at the infusion center for 5-6 hours. Cistplatin is pretty rough on the kidneys so they would do a lot of irrigation on the day I got the cistplatin. On day eight I would receive the Gemzar. It only took an hour. I would then come back three weeks later to start the process all over agin.

I never had any nausea, but the Cistplatin would make me very fatigued for a couple of days. The mix of anti-nausea drugs worked very well for me. Ask your doctor about Amend. It’s a new anti-nausea drug that works really well. My insurance would not cover the whole cost. I had to pay $45 each round for my share, but it was worth every penny.

They started my chemo two months after my surgery. I was very nervous about the chemo, but found it to be OK. I worked throughout my treatments. I would have my infusions on Thurs, take Friday off, rest over the weekend, and then be back to work on Monday. If you have any specific questions don't hesitate to send me a PM.

[chloesmom]

Don,

I'm so glad to hear from you and know that your second surgery was a success. Things sound really promising so far, and I also wonder if we don't forget in time how painful recovery was. I think my first surgery recovery sounds a lot like yours was.

I know that I was walking around the sidewalks in my neighborhood by about the 4th day home, but I also know that a couple days after I was home I walked the perimeter of my back yard to look at my flowers and it was all I could do, plus I took the phone with me in case I got in trouble! But after that, things sped up recovery-wise quite a bit as I recall.

I had chemo after my surgery and I have no regrets. I did have some choices to make regarding the drugs. The onc told me that since there was no real clear protocol (at the time, the study recommending chemo for 1b people was only released for a month), they didn't really know what drug was the most effective in combination with cisplatin.

If I would have chosen taxotere/cisplatin, or vinoralbine (sp?)/cisplatin, I would have had one infusion every three weeks for three or four infusions. If I chose cisplatin/gemzar, I would have an infusion every week for three weeks and have one week off. This would go on for three or four cycles. It's vain, I know, but with the cisplatin/gemzar combination I would not have lost my hair, and since I live walking distance from the oncology office, I chose the cisplatin/gemzar combo. I ended up having 3 cycles.

It wasn't fun, but it wasn't terrible either. I missed very little work. Chemo was always on Thursday, and I started out working on Friday after chemo. But, as time went on, I decided it best if I took Friday off and rested over the weekend. That way I felt much better and returned to work on Monday.

Cisplatin takes a long time--about 5 hours because they need to give you extra fluids. It's hard on the kidneys. I only had that once a month. Gemzar I had every time--it only takes about half an hour but it really burns going in.

Maybe one thing I would change would be that I may have gotten a port or a picc line. My veins in that hand are really cooked now, and they don't want to use the other hand for anything because I've had underarm lymph nodes removed from that side.

If you want any other info, PM me anytime. I'm so very glad everything is going ok so far for you.

Cindy

[cindi o'h]

Hi Don.

Good to see you back!

Sorry this one is tougher on you. But, it makes sense that it would be. Did your surgeon remove your lung the smiley face way? Scar across your back and side?

Well. You have got a lot to think about now. I was a little confused by your post. The dates. And the stage 1a. To me, I thought that when you have recurrence, that your stage will be different from when you were originally staged. Help me out here... is this a typo, or am I missing something.

I don't have experience in your stage 1a. I remember though that we have members who have recently gone through surgery and decided to pursue chemo on top for added measure.

Glad that you are pushing yourself enough to see daily results, Don. Hang in there!

Cindi o'h

[shineladysue]

Don,

I just want to wish you well and let you know that you are in my prayers. I also want to tell you to be patient with yourself. Losing an entire lung is a shock to the body. I know it took Mike a while to get his energy back. One thing the nutritionist told him was to eat high carbohydrate foods . She says you need it regain your strength and energy. It also took a while to build himself up. There were days he would go out and just walk around our back yard and the next day, he didn't feel like walking at all. Actually, he was out of work for 9 weeks and when he returned, he was still not 100%. He was told that it takes about 1 year to recouperate from a pneumonectomy . All I am saying is be very patient with yourself. He chose not to do the chemo follow up at the time, but he would highly recommend it to anyone . Whether it would have prevented his recurrence , we don't know, but given the choice again , we would have chosen it. As far as what the regimen is, I dont' know. Only other thing that I would like to say is make sure your doctors stay on top of follow up scans and if something doesn't feel right, follow your instinct. God bless you and know that I'm sending prayers for a full recovery.

Sue

[ellakc2]

Don,

Glad to see your back. Lung surgery is tough anyway you look at it.

Keep walking and you will feel better in no time. How's that grandson?

[enyaw061032]

Hi, Don:

I'm glad you was able to have the surgery and get that behind you. Sorry it was rougher than the first time, but understandable considering the first time you had some lung lobes left and the second time all was removed.

It sounds like you are really doing wonderful, all things considered. I was not able to get the spirometer (spelling)? higher than 750 for a long time; then l00 was slow coming and never did get it over 1500, so you are doing good. The walks will help you a great deal with building up lung capacity. I found it helped me a great deal.

Don if you have been diagnosed as la, then you should not need chemo or radiation, do you? It seems from everything I have read or heard, that chemo and radiation does not help with la, but helps with lb.

Sending great hope and prayers your way for a speedy recovery

Barb

[Frank Lamb]

Don,glad you seem to be in my opinion doing this well after surgery.I had my left lung removed Jun 03 and am still short of breath.I was at a point last year just before winter and cold hit where I could do a fast walk for 1/2 mile.(on level and wearing oxygen) before getting winded.But the smallest of hills or inclines would quickly humble me.

Keep up with the good attitude and work ethics.That as you know is important.But be patient,one lung takes it outta you.It is a lengthy recovery period for most of us.

[MelanieLR]

Dear Don,

Hope you feel better soon. As you well know, the attitude is so important & you just keep on honey!

Hugs & prayers,

Melanie

[Eileen]

Hi Don---I am glad you are felling better---- when I got home from the hospital, I do not think I could even get up to the 500.

Regarding the therapy at stage 1A---many oncologists do not recommend it---it appears that although it helps stage 1B by a certain %, it is not clear that it does anything for stage 1A at all. I believe if you go to the ask the experts forum, Dr. Cunningham wrote something along those lines. I would get a couple of opinions regarding this.

Regards, and good luck with your recovery.

[janetg]

Don,

It sounds like you're making great progress. Hope you're beginning to feel better and better everyday.

Janet

[KatieB]

Don,

sending prayers for a speedy recovery from your surgery. HOpe you get some answer soon about chemo.

[Tami]

Glad you're feeling better. It will get easier.

I also had a pneumonectomy also left lung and it is different than the other ones. I had a couple of other lung surgerys in their attempts to reach my tumor but lung removeal is a whole new ball game. Please keep working that remaining lung.. push yourself a little. It will really help. I was SOB for a while and it was scary especially because I never had any prior to thaat surgery. but it got much easier as I pushed myself.

Also please be aware of some of the other physical changes that you may or may not experience. I had and still have shoulder pain and my surgeon EVENTUALLY told me that they had to dislocate my shoulder to get to the tumor. I also saw on follow-up xrays (a 6-8 months after surgery) that they took a piece of a rib and also ended up with 2 "dislocated ribs" that still pinch me. Plus keep in mind that your internal organ WILL shift around and you will probably notice it. My stomach and colon have moved up. You can hear the food go through my system and my stomach growls all the time. I have no idea what it sits behind in the average person but now it's out in the open and making noise all the time. My heart also shifted a little. I can actually feel it beat much more than before and it's alarming at times. Plus you also have the burping!!! I never had problems with it but now if I roll on my left side I will burp like crazy.. almost like a pocket of air comes out. It's weird! Finally my right lung has gotten bigger and is moving towards where the left one was. I don't really notice any particular SOB anymore other than I'm out of shape but I'm trying. Walking etc.

It's amazing how your body will begin to recover and adapt... you will find lots of surprises along the way. hang in there!

sob

[elnodel]

Dear Don,

As the old adage has it, "slow and steady wins the race". Guess you can't really push too hard, not with one lung. But you're doing fantastically with the old spirometre; I'm sure the rest will follow.

When Len was first diagnosed, he was put at IB - missed IA by .5 cm. But when they operated, they found one malignant mediastinal lymph node and that bumped him up into IIIA. He had originally been told that they would operate but not follow up with chemo or radiation if they found nothing else. Obviously, this was not the case so we went ahead with chemo and, finally, radiation. But at the very time that the new diagnosis came up, the news came out that the experts were re-evaluating the no chemo policy and recommending chemo for many patients in stage I as well as those in later stages. I know our oncologist is a proponent of that.

Len had carboplatin and taxol in four increments, given at three week intervals. The infusion took about five hours each time, with the other things they give you to prevent reactions. Len had a relatively easy time with it all, thank heavens.

Not sure if this is at all relevant to your case. Let us know how you're doing and what you decide.

Good luck!

Ellen

[Maryanne]

Hi Don,

I was wondering what happened to you. So now I know.

I hope your recovery becomes better and better everyday. It seems like you are having a hard time. I am so sorry for that. But one day, this will must be a distant memory, like your first.

It still upsets me that you were IB and this happened to you.

It certainly made up my mind to make sure that Joels takes the preventive chemo. If he ever gets to it. But thats another story.

Please take care and know that Iam thinking of you. You will feel a little better each day. So glad that they caught this in time.

Maryanne

[Fay A.]

Welcome Back, Don!

I had my right lung removed, followed by a pleural effusion that partially collapsed my left lung, so I ended up on supplemental oxygen for a while, too, after the surgery. But the pleural effusion eventually was absorbed, the lower lobe partially re-expanded, and the left lung actually grew a bit larger. This takes a bit of time to occur, but you're going about it the right way. Just don't go faster than your docs recommendations for physical activity until they give you the okay. They're just as axious for you to get back to normal as you are...

But you also have to accept that you will have to define a (as our Don Woods coined it) "new normal".

Not sure if this will help you, Don M., but it surely made me feel more hopeful about some of my interests:

Yesterday afternoon on the return trip home from yet another medical appointment, I looked up to a steep hill I use to hike and saw an elderly man hiking the trail up that hill. I use to see him when I hiked it myself. But this time was different. I was in a car heading home to lie down, and he was hiking the trail alone...using what looked like the long poles with sharpened ends that cross country skiers use. I thought to myself that if I can find some poles like that to steady me when I'm climbing and descending the steep grades then I might be able to start hiking the canyons again! That would be a huge YAHOO in my world! Backpack with portable oxygen (mine carries three tanks), those poles, and a good repair to my right shoulder and I may be out walking the way I LIKE To walk!

We have to adapt to our changed circumstances...but we can do it.

Best wishes,

Fay A.

[richinsdakota]

Hi Don; sorry u had to go thru that again...once is hard enuff, huh? Ur spirometer readings sound just like mine. I left the oxygen at the hosp., and found I could walk 6-8 blks without much problem. My problem is stairways, bending and stooping around house, or working much with my upper body., get winded fast then, and I dont seem to gain much capacity in remaining lung, in spite of lot of excersize, etc. Had to cut excer. down some, as I was irritating the chest pain. Sprirometer seems to be stuck around 12-1500 now.

Yea, swelling sucks, and I sometimes notice a kind of cold, clammy feeling...dunno...meds maybe. I tried adjuvant chemo, but onc. hit me with full dose of Taxotere, which I had a severe reaction to, (gave me pnemonia like infection, in remaining lung), so once I recovered with a week of antibios and steroids, I stopped treatment there.

People have diff. tolerances of diff. chemo drugs...so no predictiing what it will be....I maybe should have tried some milder drugs, but guess I had had enuff...decided to take my chances . Anyway, good luck ....from a fellow one-cylinder guy. (one lung-er). Rich B.

[ken f.]

hi don,

sorry you had this route open up but like you said you don't want to be chronic.

i'm 1a or 1b (two independent primaries) and i think a post above is correct that there is not firm showing that chemo benefits 1a at least where tumor size is close to or less than 3.

knowing this i have gone for carboplatin/gemzar and a two week on one week off three cycle course. it seems like the thing to do to me and i have been tolerating (but not liking it) into the secord of four rounds.

i would just feel so stupid if i hadn't done this and had a recurrance when it was suggested as a cautionary step i had to go for it even though i don't have much confidence in efficacy.

best of luck getting a little wind back.

[Don M]

Thanks for your words of encourgement and prayers everybody.

For the first 8 days after surgery I stayed at my wife's house in town. We are legally separated. She graciously took care of me as she did after the first operation. One thing about the cancer is that it has brought my wife and I closer together, maybe even more so than when we were living together. We have both discovered that we like our separate living arrangements, but we both assume that we will eventullaly live with one another again.

I am at my house now, about 30 miles from the nearest hospital, in the country. My daughter Amanda (27 years old) lives with me, so I am not alone.

To Cindi o'h: The doctors did not know if I had a new cancer or a recurrence of the original cancer. The surgeon told me it was staged at Ia, as if it was a new cancer. I don't know what the rules would be if it was a recurrence. I guess it would still be Ib. The incison line followed my original incision, the smiley face on the side.

Tuesday I have an appointment to see my oncologist to discuss adjuvant chemo. Some of you question doing chemo for Ia. I would too if it was the first time around for cancer. But since I had cancer before, I don't want to take a chance at getting it a third time. I am going to get every edge I can get at preventing a third cancer. It may have very well been that the second cancer was a recurrence that could have been avoided if I had had the chemo.

I have a nice quiet country road that runs along the front of my property. Tomorrow I am going to start walking along it. My oxygen saturation numbers are good now, but I will use my oxygen equipment for the next couple of weeks and then do it without.

I guess I will have to update my signature thingy now.

Don M

[slinaresholz]

Best of luck, Don. Hope you have a speedy recovery.

Sharon

[Remembering Dave]

Don, I don't know a thing about your situation since my husband has SCLC, but I want to say I admire your spirit and stamina and to hang in there, it sounds like you're on the right track. I'd probably want to try the chemo, too, since you're now a repeat customer.

Take care and God Bless,

Karen

p.s. I hope things with your wife continue to improve or become a richer relationship or whatever. I value my marriage now more than I could have ever imagined.

Karen