navalbine ?'s

[dede10]

After doing gemzar, and realizing my counts were going far too low, we switched to Navalbine. There eas a 6 weeks break between the 2. Every since starting navalbine, I have felt horrible! I have terrible pains in my arms, legs, hips, & shoulders. Swelling is horrible, too. I took a lasix 2 days ago, and have lost 10# in fluids since then.

I don't think I can tolerate the Navalbine anymore, as I am sick of just lying around & not even having the energy to do the things I want to do, and the pain is just unbearable. My onc has gone from lortabs 5 mg, to 7.5, to morphine.

What would anyone else suggest?

[Barbara H.]

Hi Dede,
I also ache from having Navelbine, and had terrible mouth sores with my first infusion. I still feel achy with subsequent infusions, but it is tolerable. Advil works for me. Navelbine also reduces my counts and twice I have had to skip my infusion. My oncologist prefers to have me skip a treatment rather than add neupogen which can cause considerable bone pain. I also receive Navelbine two weeks on and one week off. Maybe your oncologist needs to lower the doses. How many infusions have you had? It may get better as you have more. I read many posts of women complaining about the effects of Herceptin and I happen to tolerate it very well. That shows that we are all different.

I sympathize with your feelings of not wishing to lie around in pain; I hate what chemo does to me, especially because I have no clue when and if I can take a break. Herceptin worked alone for me after mets for 1 1/2 years and I became a bit spoiled.

Best wishes and I hope you find a solution!

Barbara H..

[dede10]

I had it 2 weeks in a row, off 1, because of low counts, then had one on Tuesday. I'm suppose to do 3 in a row, then off a week, so far, that's not happened. Advil doesn't seem to help, and it hurts just to get up, especially my (L) side.

I am also on herceptin, but that seems to be a breeze.

[Barbara H.]

Hi Dede,
I sounds as if you are having a hard time with Navelbine. Most women who post here find it to be one of the easier chemo drugs. However, that may not include you. You may need to try a different chemo that works for you.
Best,
Barbara H.

[dede10]

I wanted it ti be an easier one, bit Its not, atleast not for me. any suggestions?

[lu ann]

Dear Dede,

What stage are you and what other chemo's have you been on? I was dx. with recurrance 02/2004 to my spine, pelvic bones, and mediastynym.

I have had the following treatments:

February, 2004 thru the present I have been on monthly zometa.

March and April, 2004 I had 22 rad. treatments to spine and chest.

June thru December, 2004 I had taxol, carboplatin, and herceptin. My tumor markers dropped to normal with this combo.

Dec. 2004 and Jan. 2005 I was on navlebine. I felt horrible and had to get shots to build WBC's, which made me feel worse. Tumor markers started to rise.

Feb. thru May 2005 I was on gemsar and herceptin, 2 weeks on/1off. I felt miserable as my WBC's would drop and I had to have shots. I stopped chemo for 3 months.

August thru Dec. 2005 I resumed treatment at a new facility with a new doctor. She prescribed gemsar and herceptin every other week, which was tolerable. I did not need shots to build WBC's.

Tumor markers continued to rise but scans were stable so I was given a 5 month break from chemo, including herceptin. I continued monthly zometa.

May, 2006 I started xeloda without herceptin. The side effects have been tolerable. The skin on my lips and mouth are thinner which causes some burning with certain foods. I have also had swelling in feet, which I have been prescribed lasix. I'm waiting to find out if I can get tykerp (lapatinib). I will be taking it along with Xeloda.

Why are you taking such strong pain medications? I am on a deralgesic fentynyl patch for a compression fracture in my back caused by the bone mets.

Love and Blessings from Lu Ann

[dede10]

I am stage 4 her2+++, dx'd in March 2003. I normally have a high pain tolerance, but the pains in my legs & hips are horrible, and I wake up crying. I've had 3 kids-no pain meds, and a TAH/BSO, and had pain meds for 3 days, them tylenol or IBP.

My last scans were last month & nothing in the bones.

I am almost bready to quit all of it, but will try anything.

[lu ann]

Dear Dede,

Last May I felt like I couldn't do any more treatments. It just did not seem worth it. I was able to take a three month break and resume treatment with gemsar. The gemsar was alot more tolerable when taken every other week. I did not have to take the shots to build WBC. This was where most of the pain came from.

Where so you have your mets? How old are your kids? The kind of pain we go through with cancer isn't like childbirth. We soon forget the pain when we see our new born babies. This is a very grueling and at times very depressing way of life. If we want to live we have to continue with the treatment. But I have found that if I can get breaks now and then I feel I can go on. Out of the last 2 1/2 years I have managed to have 14 months free of chemo. I continued monthly zometa for the bone mets.

Have you been on xeloda? I have had the least side effects with this drug, at the right dose, and almost feel as though cancer does not exist in my body. It has taken a long time to get to this point in my mind.

I take paxil and elavil which has helped tremendously with the anxiety. I don't feel like I am doped up with the pain meds or anti-depresents. It just takes the edge off and I am able to cope with life as a cancer survivor. Yes, we are survivors and we are not weak, we are strong.

When I was newly diagnosed with the recurrance I never thought I would live a year, much less 2 1/2. I was terrified and I cried all the time. I could not bare the thought of dieing and leaving my loved ones behind. Once I accepted the fact that my body will die, but my soul and spirit will live on with a God who loves me more then anyone has ever loved me, I started to enjoy my life again. I'm not saying I don't get sad or angry about going through this, but I can cope no matter what lies ahead.

I have listened to so many stories of human sorrow and suffering. I just thank God for another day of life that I can truly say I have been blessed. Just try and hang in there, Dede. We are here for you.

God Bless You
Love, Lu Ann

[dede10]

Oh, I have my days. I do have a strong faith, and know that my spirit will live on, it just saddens me to leave my husband, children & 15 grandchildren!

I have just about decided Navelbine is not for me. I know there are tired days & off days, but they shouldn't all be like this! I have been totally miserable for the past 8 days! I am going to go with my husband on Tues & talk to my onc about taking a few mos break, then maybe starting something else. He said the every other week option was not a good one for me, but I do think it is better than not doing anything at all. I have had no problems with Herceptin, other than lymph nodes acting up....so I will remain on herceptin.

I realized today, that its been about 3 1/2 years since my initial diagnosis, and I'm still here. I've watched 3 more granchildren come into the world, I've seen 2 of my grandchildren take First Communion, and will see my nephew take his First Communion this next year. My husband is wonderful, even when I am a terrible old grouch. I have had so much to be thankful for.

[KathyA]

Dear dede10,



I was on Navelbine for a few months. The pain was just as you described. I had to stop, up most of the night crying and in terrible pain. I too thought I had a high tolerance for pain. No more that stuff has made me a real chicked. My doctor switched me to Gemzar it worked for about a month and then things have gotten much worse. However, while on the navelbine my tumors shrunk in the liver and lungs we didn’t test the bones. What we have done now – the last three weeks is (after a two week break, I just had to take some time off.) go back to the navelbine. According to protocol I should be taking 51 ml? (51 something) we started at 35 on a pump over a 24 hour period, last week 40 and today 45 everything over a 24 hr period. There have been no studies on this approach we are experimenting I guess. However I have not had any pain to speak of. Had taked a couple of advil after reading here that that is what others have taken and it helps but the pain has been really 0 to 2 nothing at all on the scheme of things. However, the navelbine was the worst and we stopped even though it was doing the best of all the other treatments I’ve had. The doc says we will have a ct scan after 5 or 6 treatments that’s only in 3 more weeks. I take herceptin too for the past 1 ½ yrs. My blood work always shows that I am not in danger of any tumors both the Her2nu and the regular tumor markers. We can’t tell anything from the blood work I always look sooooo healthy no tumors.

How was the navelbine working for you?

I’ve had 4 ports due to infections, wound is my chest lasting 4-6 months because of the ports, congestive heart failure, lost my toe nails and finger nails, have some hair but lost most of it but not bad with a base ball hat - hate wigs - that is so strange that it never all left but no eye lashes or body hair. What a hoot. I too with the help of God can pretty much laugh at this shit.

Originally the doc said statically I had 6 yto 8 month but no one could tell where I would fall on the static line. Thank you God for butting me on the far end.

Good luck and God bless.

It is so strange how differently we all react to this junk. My prayers are with you and all here.



KathyA didn’t sign on.

[dede10]

how are you doing it over a 24 hour period? Are you staying in the hospital? I have had a total of 3 doses of navelbine, and have had soooo much pain! I have cried & cried over it. I rarely ever complain to the doc, so I know he doesn't think I'm a winer or something....

I've had 2 ports, an angioplasty, lost all my hair, grew back, is thinning a little again, now. I was dx'd 3 1/2 yrs ago at stage 4. I hate this disease! It was never on my list of things to do in my lifetime.

I never imagined I would hurt so bad from the chemo......

[KathyA]

I'm using a pump I have it on now and it is attached to my port. It's nothing. Have to keep it straped on because the first day I took it off the strap ( like a fanny pack) and put it by the computer got up and crashed to the floor. Very expensive equipment and as I was walking out the door the doc yield to me "don't drop kick that thing". Sooooo since I don't even know it is on I keep it strapped.

Why did you have the angioplasty?

You have my prayers I know the pain your in God bless

KathyA

[dede10]

I had my port placed when I was initially diagnosed, in March 2003. Beginning in Sept 2005, I started getting strange headaches, and a 'tight' feeling, in my head. MRI's were Ok, and all my scans seeemed normal. As time progressed, the symptoms becamemore & more of a problem, although couldn't figure out why. When I had scans done at the end of Feb, not only did we see thatmy lymph nodes were again acting up, but there was a bend in the tip of my port, and possible clotting. On closer exam, I needed a new port, and I did have clotting, along with the need for an angio in my superior vena cava. none of this was heart related, but port related....:sigh:

On a brighter note, it has been 11 days since my last dose og navelbine, & I am finally starting to feel like a person! I am suppose to start back up again, on Tuesday, but I've made up my mind that there is absolutely no reason to exist with pain for 10-12 days, to finally feel normal, only to start all over again. I will continue the herceptin, but we need to try something else, now. I am just not tolerating the Navelbine.

There has got to be something out there that I can take to put me back in remission! I understand I may hurt on occasion, lose my hair, be sick...but, not like this!