Changes to my Navelbine & now side affects...

Chelee · 01-02-2010, 05:35 PM

My onc started me off on wkly Navelbine. Did it that way for 3 wks. Counts tanked quickly so she did reduce dosage a couple times. But I had no problems at all with it and felt pretty good for someone on chemo. (Navelbine/Herceptin/Zometa)

But now my onc is on vacation for a month and she decided to give me a 2 wk dose of Navelbine. This was recommended by the 2nd opinion onc I saw at City of Hope. Since I went from wkly to a 2 wk dose I feel awful. Main complaints are nauseated, constipation and jaw pain.

My onc wrote a script for "Lactulose" for the constipation. But I have doubled what it says to take...on top of taking Senokot and nothing works! I'm sick of taking this Lactulose because it's like drinking pure syrup. Makes me want to throw up just thinking about it. But I wasn't having any problems with nausea on the one wk dose...now I feel sick all the time. Started feeling nauseated 4 days after my infusion. What's strange is I'll feel hungry...then I'll go eat something that's very bland and safe...then I get really sick. I've had absolutely no food today at all because I feel so sick. But it's making me weak not eating. I need to find a way to eat because I feel sicker when I've had nothing. I'm playing heck even drinking my water...I'm a big water drinker normally. (I started taking Zofran & Compazine yesterday & it helps for a while...but I still don't feel up to eating.)

Did anyone else on Navelbine have these problems? Especially the "extreme" constipation and nausea? I'd rather go back to wkly because this is awful. (Plus I have bad jaw pain on both sides. Is this from Navelbine or from the Zometa?) Worries me.

Chelee

Rich66 · 01-02-2010, 05:49 PM

Are you taking pain killers? They can cause constipation. If they are opiates, look into Relistor.

Colleen007 · 01-02-2010, 06:26 PM

Hi Chelee,

I get Navelbine weekly unless I am going on vacation (have to live life, too!). I have had severe problems w/ constipation in the past and my miracle cure is Miralax. When I first started taking it, it was only available by prescription. It is now available over the counter (and I am now seeing generic versions of it). I usually only need it for a couple of days after treatment...and by then, things are moving right along. I get Zofran through the IV before I get my Navelbine, so I haven't had many issues with nausea (but that probably contributes to the constipation). I do, however, have serious heartburn after treatment, so I have learned to not eat a heavy meal for a couple of days, don't eat dinner too late and chew up some Tums before I go to sleep.

Hope this helps.

Colleen

Carolyns · 01-02-2010, 07:08 PM

Hi Chelee,

I am sorry to hear the Navelbine is giving you such a hard time. It was difficult for me too. I had to drink smooth moves tea nightly and I still had problems. I was on Zofran and got extra IV liquids.

Eventually I ended up with Prevacid too. Navelbine was not easy for me.

I wish I had some better answers for you. Thinking of you.

Love, Hope, Peace, Carolyn

LoriG · 01-02-2010, 07:30 PM

Chelee,

I had only one dose of Navelbine to hold things in check while I was getting a second opinion at MDA. I can't speak to the constipation, but I can tell you that I had awful jaw pain. It lasted about 5 days and then resolved since i did not get another infusion. I read jaw pain is aside effect about 5% of the time.

I hope you find a way to tolerate your new schedule.

Take care,
Lori

Cal-Gal · 01-02-2010, 07:43 PM

Hi Chelee--

I was always constipated until I started taking my Cal-Mag-Zinc liquid supplement at night w/Keifer and Pomegrante juice--

I mix 2-3 Tablespoons of the supplement w/a half cup of Keifer and a quarter cup of Pomegrante juice--

It works wonders and is very healthy and tastes great too!!!

Good Luck--

Chelee · 01-03-2010, 02:42 AM

Colleen, I get pre-meds too...one is the Zofran along with Pepcid. I didn't feel nauseated at all when doing the wkly regimen. Changing to this 2 wk dose is awful...I can't believe it's made such a big difference in how I feel.

This not being able it eat isn't making me very happy. I feel so hungry but if I eat then I feel sick. I think I need to go back to wkly because this sucks. I read you can have severe problems with constipation on Navelbine...they certainly have that right. When I was on Taxotere which caused constipation I just took my Senokot nightly and no problems. But I take both the prescription my onc wrote for me and senokot and it's a joke. But I do take pain meds which I'm sure has added to the problem.
I did have a bad case of heart burn last night & took some Maalox which usually works wonders fro me. But this time it only worked for about 20 to 30 minutes. I'm going to be dehydrated and and really sick if something doesn't change by tomorrow. Maybe I will start taking some Protonix again like I did when on Taxotere...maybe that will help?

Lori, Thanks for letting me know you had the jaw pain...that has been worrying me. I hadn't heard of that being a side affect but I have noticed it's happened every time I have had an infusion. I'll just think positive and tomorrow will be 7 days since my infusion so things will start getting better by morning. Thanks for all the feed back.

Chelee

Lien · 01-03-2010, 08:02 AM

Hi Chelee,

You poor thing! One thing after another. I never had Navelbine, but perhaps some of these tips can help a little:

Eat some ginger or drink ginger tea. It helps for the nausea. Soak some grated ginger root in hot water and sip.

Start the day with some tepid water. As much as you can tolerate. It helps with constipation.

Sip small amounts of drinks. Nothing carbonated though!

Try rooibos tea, honeybush tea, chicken stock,

Try mate (South American tea used by the Inca's to combat nausea, hunger and fatigue)

Try to take a spoonful of liquid every ten minutes. That way you stay hydrated.

Try reflexology. Check this chart and rub the area in the middle of your left hand. You can use a little ball and roll it over the area if you like. http://painfreelikeme.net/images/hand-small.gif

Call your doc if things don't improve within 12 hrs.

Hugs!

Jacqueline

Sheila · 01-03-2010, 02:25 PM

Chelee
We are all so different when it comes to side effects....I always had Navelbine every 2 weeks, and I was the one who had diarrhea from it...almost unheard of, as constipation is the big problem. Surprised to hear about the jaw pain, I would think that was more Zometa related....and now find out its related to Navelbine....I never got any pre meds, and took an occasional Nexium for indigestion....have then put you on the schedule you feel best on.....its a no brainer...same benefit, less side effects!!!! You tell 'em!!!!!!!!!!!!!

Rich66 · 01-03-2010, 02:54 PM

Try Navelbine infusion as late in day/evening as you can get it. (B ting ded hoarse)

Chelee · 01-03-2010, 09:07 PM

Shelia, we are the weird ones it looks like. The rare side affects of Navelbine are diarrhea & jaw pain. I can't even imagine having diarrhea on this stuff...it would almost be a blessing at this point. lol (Just kidding...I really don't want that problem either.)

I do feel much better today & was able to eat without feeling ill. So looks like if I stayed on the 2 weeks dose there would be 3 days of feeling bad. But on the one wk dose I had no problems so I will re-visit that one. Although I'm due for a PET/CT towards the end of this month and if Navelbine isn't doing it's job I'm not sure what's next? But I'll take one day at a time for now.

Rich, I actually do get my Navy Beans last part of the day. I got my Navelbine at 3:30 PM last time. By the time they run a little saline via IV I'm usually leaving about 4:10 PM.

Jacqueline I'll give the ginger a try next time if this happens again. I haven't heard of the rooibos tea, honeybush tea...but love to try new teas so I'll gladly look into that too. Thanks for the tips. I'll try anything verses feel like that.

Chelee

ElaineM · 01-03-2010, 09:12 PM

Sorry to hear you are having problems again.
I don't know much about the conventional main stream remedies some of the other members have suggested.
My solutions were similiar to Cal Gal and Lien. You may also want to try to sprinkle coconut on fruit for the constipation. I heard natural licorice is good, but you should be careful with that if you have high blood pressure. I also heard aloe vera works for constipation.
Digestive enzymes might work if you have heartburn.
I cook with fresh ginger or put ginger in my oatmeal almost every day. I eat yoghurt (kefir is similiar to yoghurt) everyday. I drink alot of water.
I hope you feel better soon.

Rich66 · 01-04-2010, 01:12 PM

Ok..that's mid to late afternoon. Any chance of getting it later in evening, in ER or on oncology floor?
FWIW, when my Dad gets really backed up, the only thing that works is enema for lower bowel followed by magnesium citrate for upper bowel. Both available at Walgreens. I have also been told that water alone is very important.

Ellie F · 01-04-2010, 01:24 PM

Chelee
One thing England has going for it is we can get hold of lots of different types of tea!! Think it's historical. Let me know if you want me to send you any particular type if you can't get it in the States
ellie

Jackie07 · 01-04-2010, 07:53 PM

Chelee,

Hope you are feeling better today.

Ruth · 01-04-2010, 07:58 PM

Thinking of you and hoping you are feeling better!
Ruth

flynny · 01-04-2010, 08:18 PM

Thinking of you and hope it continues to get better.

Adriana Mangus · 01-05-2010, 12:33 AM

Dear Chelee: Hope you are doing better!

I never experienced any problems while on Navelbine.

Just like Sheila, I had a little problem with loose BM's, but nothing too serious. I do remember having jaw pain on the left side, -- did not pay much attention to it, did not bother me much either.

I am also someone who does not experience nausea, early on -- in 1995 I did have problems with vomiting. A lady I met at a support group meeting, suggested for me to try licorice -twisters-, 7up, crackers, and cheese. It worked for me; licorice would take care of it right away. I still have it, at least once a month.

Hopefully as the therapy progresses your symptoms will diminish.

Good to hear from you.

Love,

Adriana

WomanofSteel · 01-06-2010, 04:14 PM

Chelee I am sorry you are having a nightmare of a time of it lately. I too have constipation problems. I put the lactulose in a cup of tea. It sweetens the tea and makes it easier to swallow and I think the warm beverage helps.

Chelee · 01-06-2010, 10:24 PM

WomenofSteel, I always start my morning with two cups of tea & since the bc dx I quit using suger in my tea. But that is a great idea to use the lactulose in it. It is SO sweet...should work perfect. That's really a great idea...will try it tomorrow morning.

Rich, I about died laughing about your ER comment, and using the oncology floor. Maybe I'll request one of the chemo nurses to come in around 11:00 PM that same night for my Navy Beans. I'm sure once I explain why it's so important they will gladly agree to do this.

I'll let you know how that goes? lol

Adriana, So your another one that had jaw pain with Navelbine. I'm finding out it's more common then I first thought. I love the licorice twisters idea. Black licorice is one of my favorites. What a great excuse for me to buy licorice....yummy. Thanks!

Chelee