Lung Cancer Survivors Updates

[Connie B]

Hello Lung Cancer Survivors!

I thought I would make this thread a Lung Cancer Survivors UPDATE thread.

I always see Update threads on how someone's mom or dad, or sister or brother, or friend is doing. Plus even the Widow/Widowers share there update stories on how they are doing. It's not that often that a Lung Cancer Survivor shares there Updates with everyone. (unless we bug them to)!

I think it would be nice to have the Lung Cancer Survivors share there Update stories as to how your doing.

SO, who would like to start this one off?

[Kasey]

I will start off, Connie. Was going to post this in the Update forum, but guess it fits here as well. Spent Monday, Tuesday, and Wednesday in Bethesda, MD at the NIH National Institutes of Health) for my 3 month checkup. I am blessed to remain NED !!! So have been celebrating a bit. Also while there, had dinner with mhutch (MaryAnn) who is my very special angel for steering me to her surgeon who has become mine as well. Had a wonderful Irish pub meal together with her 'very grown-up' daugher too...........6th grader!!!! So I feel blessed again to have her in my life.

Fred goes Monday for his prostate biopsy and we aren't sure just when we will know the results of that. This comes after a year of the 'watch and wait' approach. We are still 'watching and waiting' on his nodules. He must wait until October for his next scan.

We're not sure if Teddy, the dog, is still suffering effects of Lyme disease. We have been 'watching and waiting' on that too. Everyone is this household is on the 'watch and wait' program .

My niece, Tracy, has been on vacation in NH this week with her immediate family AND her brothers and their families too............one from ME and one from MN. She has her scans on Monday and will find out the results next Friday, so we are holding our breath for that as well.

SO.............that is about it from here. If this isn't what you wanted here..........move it to a more appropriate forum, please. We've had quite a lot of activity these past few weeks......from visiting family......to TX.........to NIH. We are staying put for now with some very special houseguests coming HERE next week.

Thanks for asking, Connie!!!

Love,

Kasey

[carolhg]

Congratulation Kasey!!! Thank God for NED! I hope and pray that all of the other things that you are 'waiting & watching' turn out as well.

[Connie B]

GREAT NEWS on NED Kasey. And yes, this is what I was asking for. I know Updates work here in this Forum also, because I know 90% of our members read this Forum as well.

[Connie B]

Well, I too am NED and all seems to be going okay.

I had my Nodule checked in May and it hasn't done anything different but hang out and drive me nuts.

So we could say my nodule is doing fine! No Change.

I have been dealing with SOB after this last heart surgery I had in January though. I haven't had this kind of SOB since they took my lung out 11 years ago.

So, this is somewhat new to me. My Pulm Doc said my Breathing tests are fine, that there is some small change in it, but not enough change to cause the SOB that I am having right now. So, we are somewhat baffled.

So, I went through Respiratory Physical Therapy for 5 weeks and low and behold there is no difference in my breathing. I'm still SOB! So, now I guess I have to see if it's HEART related.

My Heart Surgeon doesn't feel it's heart related. His comment when I told him I had SOB was, "Well, you do only have ONE LUNG!" I wasn't happy with his 2cents on that one, but I won't go there!

One of the gals at PT mentioned to me, could it be scar tissue from all the tubes I have had in my ONE AND ONLY lung over the last 3 years of heart surgery?

Humm that makes sense to me! Or maybe I'm still healing from having those tubes in my one and only lung from my open heart surgery in January! All I know is this is a mystery.

All and all I'm doing fine. I'm still above the grass and for the most part I have nothing major going on in my life with health issues. I like that.

I don't need to have a CT scan again until Oct for the nodule.

So, at this time life is good for me. Minor problems but very doable.

Also for those that might remember my Grandson being hearing impaired and that he had a cohlear implant put in 24 months ago. He is hearing and he is talking very well today. He's 5 now and it's so wonderful having him babble away. I never thought he would be able to hear or to talk, but he's doing very well. We have been blessed in more ways then one.

I'm coming up to 11 years of being a Lung Cancer Survivor come July 25th. I NEVER thought this would be. All I can say is I am SO GRATEFUL to still be here. I only wish ALL my Lung Cancer buddies were still here with me.

[blaze100]

Connie, I've read recently that it is not uncommon for heart surgery to damage the phrenic nerve on one side of the diaphragm, causing breathing problems and sob.

You might compare recent chest x-ray to previous chest x-ray. If diaphragm is now elevated then it could mean someone nicked the nerve. (Of course your docs won't like to admit this happened.)

Barb

[cindi o'h]

The last time I updated about how I was doing was last winter if I remember correctly. At that time, I was in training for the couch luge for the next Winter Olympics. That remains an ongoing process and I am making great strides toward perfection of mastering the finest skills and maneuvers, usually with TV remote in hand. ( I would like to see the competion just try to out-do me on this slick one!)

Also, I have been undertaking another heady project for the upcoming Summer Olympics. I know that I am outdoing myself, but I have always been known as an overachiever, and it is difficult to change at this later stage of the game.

I have been training at the pool on a daily basis for the open water swimming competition. I have been floating everyday and plan to explore the possibility of being the first human buoy at the open water swim turnaround. I know that it is a stretch for anyone to undertake, but I have an awful lot of willpower and stamina not to mention all of the benefits of less muscle (from steroids) and more fat (steroids again). It is difficult to envision how I could possibly be beat out by anyone more serious than me.

All, wish me well and cheer me on!

Cindi o'h

[Geri]

You ask how I am.......I'm still laughing about Cindi and her human bouy!!! Not a pretty picture you painted there Cindi, a visual I think I'd rather not have.

As for me, I still above the grass - love that phrase Connie and I'll have to use it again.

My health is really very good, only 4 months away from the five year milestone with no side effects to speak of, I have some SOB but regular exercise would probably cure that one.

I still get the odd twinge from the scar tissue and lying flat on my back with no pillow can be a challenge but all in all I have to say I don't have anything to complain about.

My husband's clean bill of health after his prostate cancer surgery has surely helped my frame of mind, there sure is difference being the caregiver rather than the patient.....I think I drove him back to work early by continually asking him how he felt, I'm used to being the patient and knowing all the details.

My wish is that everyone on this board, and beyond, could feel as good as I do and survive as I have. I am truly blessed.

Geri

[cindi o'h]

Geri,

Truly the best competitive condition I have been all my entire life. I will be passing out dull sticks at the Olympics so that anyone with a weaker stomach will have the proper tools to poke their eyes out.

I am expecting blue ribbons and ready for the gold!

Cindi o'h

[eppie]

You crack me Up!!!

I think that this is a very good acheivable goal for you but somehow I think you might get in trouble for doping or having a spare cooler to add to your bouyancy. Just saying....Hell, I will come and float along for morale support.

This is great news all around for our surviviors, Kasey, Cindy, Geri and Connie.

Lucie needs a send up on this thread, Don!

Much love,

Eppie

[ginnyde]

I am so happy for my 2 Connecticutt buddies. Such wonderful, great, fantastic, terrific and just plain good news from Kasey and Geri.

Kasey, I hope all the watching and waiting only brings good news for your family.

[Don M]

Don M’s update

I had my 2nd alimta infusion last Tuesday. I have not been hammered by it yet and expect it to hit tomorrow. That is the way it worked after my first infusion. I expect that beginning tomorrow; I will have about a week of slight nausea, increased fatigue and sob. Then for the rest of the treatment cycle it will linger on, but not be as bad. I think that the alimta is harder for me to do than the carboplatin/gemzar I did a year ago. I am having just 4 infusions, and my last one will be August 29th. I have not had any severe reactions or whatever. I did have one night in my second week after the first infusion, where I had chills and was shaking for about 4 hours at night, but it went away and that was the only episode. I have definitely been more sob all in all, and was concerned that my red blood cell count was not recovering fully, but when they read my numbers last Tuesday, they were seen as excellent. I did feel pretty good last Tuesday. I think it took most of the treatment cycle for my numbers to return to normal. I guess my body tolerates the chemo fairly well. Now if the stuff would just finish the cancer off for good, I will be in pretty good shape. Actually, as I write this, the chemo is starting to hit me…1619 hours, Thursday.

I had been experiencing some unexplained rib pain on my right side for about a week. My remaining lung and tumor is on my right side. They are short brief little stabs of sharp pain. I read on line at one site that bone pain can start out as intermittent. Most of the time the incidents are associated with movement of some kind, but last Sunday night I was lying in bed, one came on all by itself. I told the chemo nurse about it Tuesday. I may be paranoid about such unexplained pain, but I think I should be. At first I got depressed about contemplating the possibility of having the cancer spread to my ribs, but as I was walking back slowly Monday afternoon from checking the mail, I had a feeling of at easement come over me. I don’t feel depressed or worried about it any more. I will just get it checked out and see. I got a bone scan scheduled for July 27. It is probably just muscle sprain, but I am going to rule out mets just to make sure. I have not felt the pain since Monday afternoon.

I have a routine where I get up at 5 or 6; I have a cup of coffee, and spend some time on the pc. Then I go for a mile walk by 0800 or so. I walk at a moderate to fast clip. The other day, I pushed my self as fast as I could go. I walked it in somewhat less than 17 minutes. I used to be able to do it in 15 minutes when I had just one lung, a year ago. I may have lost some pulmonary capacity to the last tumor and the subsequent radiation and I am in the midst of chemo treatment, which probably accounts for my slowdown. After my walk, I go back in the house and sit at the pc some more, drinking water. I have breakfast by 10 or so. I take a midday nap for 2 hours. I get up from my nap have a cup of coffee, go on the pc a bit, and then spend a few hours in the garden. If it is too hot outside, I do housework. I go to bed by 10. I drink 4-6 cups of water during the day and have 2 cups of coffee. For the first 2 days after chemo and on chemo day, I drink 8 cups of water. My appetite is good.

During and after my fast mile walk the other day, I had to cough and clear my throat a lot. I came in the house afterwards, and was coughing and aheming a lot. I coughed up some white gunk. I got a magnifying glass and examined it closely. It was a 3 lobed structure with a hole in the middle. It was actually off white in color. There was no pinkish substance or blood, so I decided it was not part of my lung. I think it must have been some pasta that I aspirated while eating at my wife’s house the previous week. I liked that explanation best anyway. I put the chunk in a vial and poured some 90% rubbing alcohol over it. I was going to take it to show and tell on my chemo day. I did take it with me, but never showed it to them. I am sure it must have been pasta.

I am going to have a PET/CT scan in early September to see just how dead my tumor is. I hope it is very, very dead.

Don M

[cindi o'h]

Hey Don,

Glad to hear you are working your way through the elements of the effects of the chemo. Your diligence and efforts in maintaining your strength through all is astounding as far as I can see. Man, you are determined!

Maybe that pasta-looking thing sitting in the alcohol is a tumor you coughed up? That would be one way to get rid of it, I s'pose. I saw some lung tumors on a slide show at a lc symposium and they kinda' looked like white spherical pastas. See what the onc. says. The tumors were very white and shiny.

Cindi o'h

[Don M]

Well cindi, I threw out the pasta-tumor thingy. I may ask him about it anyway.

Don M

[Connie B]

Can't say as I blame you Don for being somewhat paradoid! It's never easy dealing with this crud!

I am glad you have given such a complete report on how your doing on Alimta. Although I'm not on it, your step by step expeniation of how it's going for you has to be helpful for others on the same road as you.

I will say, it sounds like your fighting the fight with grace and dignity. Your bound to have some down days, and rightfully so, but your zest to fight pulls you right back up to the top so you can continue to beat this monster.

I continue to keep you in my thoughts and prayers. I admire your strength and grit!

[ursol]

I had my 5th round of Taxol/Carbo yesterday and 23rd radiation treatment today. one more chemo treatment coming next week Tuesday and 12 more radiation treatment. Then on Sept 20th I start my round of scans to see if I advance to surgery.

So far if some of you have read my other posts, I have given up the driving to work and treatment (it's about a 40 minute drive to radiation from my home or about 25 minutes from my job). My hubby and some co-workers are going to share and get me to where I have to go.

I am still working full time but from home some of that time. Although I take each Tuesday off as a vacation day. I will officially go on short term disability for the surgery if I move onto surgery.

I have had varying side effects from chemo or nausea meds., but lately the nausea has been terrible and I find I'm not able to drink enough fluids and possibly getting dehydrated so I'm not able to respond and get online as often as I'd like because I'm trying to work, deal with the kids, chores etc, scrapbooks that I love and am running on empty energy. No hair loss yet but I had cut my long hair in preparation. Worked out great for the summer.

The radiation causes alot of fatigue and the esophagus is soo hurting that I have trouble eating but I refuse to go to a liquid diet (I'm incredibly stubborn)so I just chew alot before swallowing. No radiation burns yet but with 12 more treatments left, I'm not so sure this won't happen.

My mood has been good until losing the ability to drive my car...that loss of control is bugging me but I know I'll get behind the wheel in due time and I need to keep positive. I have alot to be occupied with now with getting my 12 and 6 year olds prepared for the start of school. Also debating on taking a little vacation between treatment and scans. I will update again in two weeks when the last of my treatment ends for this round.

I'm soo glad you guys are all here to talk to, it really makes me feel ok and that I can really do this and get through it. I do sometimes think about the day I get the results of the scans (scheduled for Sept. 22nd apt. with surgeon). If the results are bad, how will my brain process and handle that information...will I be able to stay positive and strong. But then I tell myself I cannot think about that until Sept. 22nd.

Lilly

[Don M]

It sounds like you are deep into your treatment Lily. It is hard to work and do everything else you are doing, I know. You are having an aggressive treatment and I think the chances are good that the scans will show marked shrinkage. I am rooting for you to advance to the surgery and curative part of your journey.

don m

[terriep]

I am rooting for you too!! I well remember how hard it was with young ones at home, having the energy for their needs, keeping up with everything - and then the emotional stuff. Prayers will continue for you..........

[Connie B]

Hey Lilly,

Well my friend, I have to share with you that I am so glad your not driving at this time. Just remember it's only temporary!! It's really a smart call on your part.

I hope your nausea will get better for you. I know I had some of that also, but mine wasn't too bad. It was doable compared to what I hear from other survivors. But, it's not a picnic! I have to say, when I went for my treatments, I always walked through those doors saying to myself and who ever went with me, I would say out loud about 10 times, "I can do this, I am NOT going to get sick, I can beat this crap" I gotta tell you my dear, Mind Over Matter DOES Matter!

I know too had a sore throat the last 10 days of my radiation treatments. I didn't stop eating either, but I did drink about 3 or 4 can's of Ensure a day.

It just helps to boost the energy. And we all know how our energy levels just go down the crapper!

One more thing, If your tired and you feel tired, the you NEED TO REST. Your rest is SO IMPORTANT during this time. You can't take on the world right now, but you can do one or two things at a time.

Pushing yourself isn't always a good idea during your treatment time. This stuff can knock you on your butt and it's not always that easy to get back up. So, SLOW AS SHE GOES!!!!

Just try to stay focused on getting better. Make that your first priority. You'll have lots of time after all this is over to get your life back in order.

Sending you Get Well Hugs and Positive Vibes.