Hi there. It seems there are more than a few of us either currently receiving or about to start navalbine chemotherapy. So I thought it would be a good idea for others to share their experiences on this treatment. How long does the infusion take, how long have you been on it, side effects, etc. I've got the "sheet" on possible side effects but have always found it more useful to hear directly from patients who have been there done that.

Thanks in advance for sharing your "navalbine" experiences.

Sandra

_________________
See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390

43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).

March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine

"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi

"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)

Hi Sandra,
I had (4rnds) Navelbine. An easy one out of all the ones I had. No side effects at all. In my case they pushed (had to look it up to refresh my memory - injection into a vein (intravenously) through a fine tube (cannula) inserted into the vein) it through. They timed it and it took maybe ten (the chemo itself) minutes if that. They give you something also but it's been a while so my memory is fried. The whole thing from start to finish maybe 30 minutes or so.
Hope this helps,
Rich

_________________
TO READ ABOUT MY PROFILE (MY JOURNEY WITH LUNG CANCER - AS THE CHEMO DRIPS!) WITH STAGE IV LUNG (BAC) CANCER, DIAGNOSED MAY, 2002 / PROGNOSES TWO YEARS AND MY STORY PLEASE CLICK LINK BELOW.
http://lungevity.org/l_community/viewto ... 2155#72155

QUESTIONS TO ASK YOUR DOCTOR / HELPFUL LINKS:
http://lungevity.org/l_community/viewto ... 585#163585

You must, on your own, make the commitment that you will do everything in your power to fight your disease. -Advanced stage lung cancer survivor RA Block-

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.
-Buddhist Quote On Gratitude-

It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
-Dr. Elisabeth Kubler-Ross-

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. -Author Unknown-

Top Ten Reasons Why I’m A Lung Cancer Survivor

10. Not going into funeral mode the day I was diagnosed. I never once thought this was it, that life was over or why bother. Lung Cancer is not a death sentence and one can be cured of it or still have a life living with it for many years.
9. Not dwelling on it. How I got it, why me, what if I did this/that or the blame game etc. It’s counter productive and wasted energy.
8. RESEARCH, RESEARCH and more RESEARCH. Knowledge is the key! The more one knows the better one can make decision with their doctor and better fight. Keeping it simple, does not really matter to me every little word on a report. Try to get down to the chase of what is going on and what needs to be done.
7. Living life to the fullest by making the best of it every day and by keeping busy. Life is short enough so why let a day go by.
6. I appreciate everything my family/friends do for me. I let them (especially Kathy and Tina) know how much it means to me and how much I love them.
5. Not making my disease about me. It affects my family/friends just as much if not more. My life has changed and I have to learn to adjust to the new normal. If I can’t do things or go places does not mean they can’t. It’s very important they have a life and go about it.
4. Keeping an open mind about treatments. Don’t know unless you try. Laughter, it’s the best medicine, does not have to be all doom and gloom. Exercise, it’s good for overall health and a great stress reliever. Healthy (common sense) diet, this one I need to improve on. I can eat in a coma.
3. Staying positive and having a good attitude. YES it does make a difference regardless of what adversity one faces. Have my days like anyone else but they are few and far in between.
2. All my doctors/nurses. I’m very blessed/fortunate to have a great medical team and great health coverage.
1. My wife.my daughter and my closest friend I love them the most and they mean the most to me. I owe it to them, there the ones who have stood by my no matter what and showed me the true meaning of family, life and love is all about. You can lead a horse to water but can’t get it to drink. Bottom line it’s up to me to be pro-active, to keep trying and to never never never give up!

Debs first Chemo was Navelbine or Navy bean as it is affectionately called! Just for pronunciation is all though. Side effects were minimal to none but results were good! Lie rich said Bout a 1/2 hour for infusion Mixer and gone like the wind for the day!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I'm not sure how helpful I can be, as I am just in the second round of my chemo and still trying to figure out the side effects myself.
I am getting --- 4week/rounds--28 day cycle --days 1 and 8 cisplatim and navelbine, day 15 is just navelbine---and day 22 was supposed to be navelbine too, but it looks like I may be getting that week off coz my blood counts are low and my onc doesn't think I will be able to handle it.
I get most of the side effects --- but the week with the navelbine was very mild compared to the previous week with both---just very tired the next day--but I do get a migraine like type headache every Thursday morning at about 3am (chemo is on Tuesday) that lasts pretty much all day, but is managable with Excedrine.
Deb[/b]

Thanks guys for sharing your experiences.

My doctor kind of scared me yesterday. She said a certain percentage of navalbine patients develop flobitis (sp?) where the veins react badly and swell up. And then you need to get a pic line put in. The way she talked to me was almost like she was certain it was going to happen. I can only get IV's put in my left arm (they have never been able to find a useable one in my right arm) and my veins are pretty used up from previous chemo and my hospital stay in January. So I am a little worked up over that prospect.

And of course, there is a chance of hair loss which I am really not looking forward to.

I guess I am getting myself all worked up before I have even started. My last chemo was last fall and I just am not really looking forward to it. Guess I just need to suck it up!

Anybody had flobitis or hair loss from navalbine?

_________________
See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390

43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).

March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine

"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi

"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)

for what its worth, I don't remember Deb getting a Port until couple rounds in after Navy bean or losing her hair. She did not suffer hair loss until Tarceva and that was Chemo #3..

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Sandra,I cant be of much help here,I was never on navalbine. But my prayers are with you that you have no problems. No hair loss,no vein problems,the only side effect will be kicking cancers butt.

_________________
Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

Sandra-

I have now been on Navelbine for quite a few months (5 -6??). Side effects are minimal altho I have been told that some people get pain in the arm that they get the infusion in..........I have never gotten that. The only side effect I get is an ulcer-type burning the night of chemo and the next morning I am just fine. I get Navelbine weeky for three weeks and then one week off - thats no fun going every week, but as you know, gotta do what you gotta do!!

Navalbine is a vessicant - which means it is extremely irritating. That is why they have to administer it as a push.....a HUGE hypo that they inject into the IV tubing with the saline turned up high to get it going into your system. Its a ten minute push and about every minute, they pull back the syringe to make sure there is a good blood flow and to check that its not leaking out. Should it leak out on your skin, you could get serious "burns" and possibly need plastic surgery to correct it. Now - don't let that scare you too much because the chances of that happening really are slim BUT OF COURSE THEY HAVE TO WARN YOU!!!. Thats why they prefer that people have a port for Navelbine. Of course, I have refused until my one last vein goes to hell but last week I was very dehydrated due to something else and my veins collapsed and it was quite a problem. Once they attempt to stick you, if they can't get it, they can't try to stick you again in that arm lower than the first stick in case it would leak out.

Hope this helps. As far as success on Navelbine........well, I still need to officially post, BUT....had a scan last week and for the first time since my initial carbo/taxol cycles 2 1/2 years ago -------- I had SHRINKAGE!!!!!!!!!

Let me know if you need more info!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Sandra--I can't help you on the Navelbine, but mom had a port put in after her first chemo session (they had to hunt and try seeveral veins before they got one that would work) and said it was the best thing she could have done for herself.

Susan

_________________
76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385

Sandra,

I just happened to be wandering around here tonight, and saw your post. When I can't sleep, I roam.

We know that Bill began the Navelbine on this past Tuesday and all had gone quite well. The infusion took all of about a 1/2 hour.

This morning, Friday, he showed me a pinkish/red area just above the infusion point, and it seemed to be light in coloring. It was not there prior to this morning.

BUT, since we were told to call about anything unusual in the infusion area, I called.

Eileen, the nurse, told me that it should be watched and asked me when Bill was due in again. That would be next Tuesday. She said that we should look for any other areas of "coloring or blotches."

There have been none. I checked at intervals all day.

I checked it again tonight and that lone discoloring has all but disappeared.

Let us remember that Bill has had many chemo regimens, including radiation many times. He is not our robust young'un here. But, he has survived and come back to "save the day."

If that is all that Bill has experienced with his first infusion I think we may be in pretty good shape.

However, Sandra, I do think that if Bill's veins do fall apart, or some such other untoward event occurs, we can always get a port. That, I feel, would be the least of our concerns.

Being allergic to the Navelbine altogether would be my worst fear.

As to the hair, our oncologist said that it "might" happen. Did I tell you that previous to all the radiation and such, Bill was a sandy blonde with gray tones? It came back totally very dark brown with absolutely no gray.

Of course, who knows where this one will take us? It has been a trip, indeed.

Barbara

_________________
Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.

Sandra, if I remember correctly, if there is a rare side-effect, you got it. Recalling that, your doc is probably just trying to cover all the bases. The way my mind works is, you lost your hair when you weren't supposed to so if it's a possibility this time, you won't lose it. Can you follow that logic? LOL

I wish you well on the treatment and if the port is an option, I highly recommend it. But I'm not sure from reading a couple of the other posts, are they saying it has to be IV in arm?

Watching and waiting for updates. Crossing finger and toes and sending healthy energy your way.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.