Navigating Navelbine
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Hi lemondrop - welcome! So glad you joined our small group.
So, my off week started today and honestly, I don’t feel that good. My stomach seems to be filling up with ascites again and I’m just uncomfortable. No energy either. Just feel like laying on the couch or in bed all day. Very frustrating as on past chemos, I usually felt really well on my off week, although this time it may not be the chemo. These ascites are miserable and make my back hurt too. Not a good last few days for me....
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Hello Lemondrop- This may sound crazy but I actually was relieved to read your post. I just began my 2nd cycle of Herceptin/Navelbine and got back my lab work up yesterday. While my tumor markers did go down a bit, like you, there was not really a marked difference-so of course, I was disappointed. My husband on the other hand, did point out that my numbers consistently went up ALL summer long so while it was small decrease, this is a welcomed change. My tumor in one of my lymph nodes on my right side is still also pressing on nerves which is continuing to cause me a great deal of discomfort in my shoulder and arm. I do know that I have to have some patience but I was hoping for a stronger response "right out of the gate" so to speak.
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Hey gals - I am not liking this Herceptin/Navelbine combo one bit. Have just felt so poorly since I began this protocol on Sept 5th. I did have a bad stomach ache and backache for a few days after the first and second cycle infusions, but in general I can't seem to find energy to do anything besides be in bed or on the couch. Also, I've had ascites drained twice - once 2 liters on 9/10 and last week 3.6 liters. I'm not sure if it's building back up again.
I had my 2nd cycle 1st infusion on Wed and I'm still feeling bad today, which is Monday. I haven't had this feeling on any other chemo. I usually tolerate the meds quite well and have a few days down time, then I'm back to “normal." On these meds, I seem to feel terrible daily, including my entire off week last cycle. I'm so incredibly frustrated. This is no QOL. Frankly, I'm at a loss as to what to do. At this point, I have no specific aches or pains but not much appetite at all. I would appreciate any suggestions. I guess I need to call my MO too.
Thanks, ladies. 💕
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Notes on how to tolerate Navelbine. It's been the hardest chemo I've done, but it's dropping the TMs, so into the foxhole I go.
1. If you have any tendency to stomach troubles, Navelbine will increase it. On this chemo, I became completely gluten intolerant. Being gluten intolerant Hurts! I had chalky stools, extreme bloating, and diarrhea. The minor gallstone trouble I had turned into major gallstone pain, and caused chronic pancreatitis. Nothing shows up in imaging or serology, so - according to science - I'm in pain for no good reason. Not eating helps, but that's not really sustainable. I'm doing the intermittent fasting, and eating a dairy free (taxol made me dairy intolerant), wheat free, fat free, and fun free diet. It's helping, and I'm slimming! No worries about my weight loss, I have plenty of reserves.
2.) The fatigue: I don't whether it is the Navelbine causing the fatigue, or that I'm heavily pre-treated and getting a bit tired. I log too much sofa time, and all tasks have to be broken down into tiny chunks so that I can rest in-between. Vacuuming one room at a time! Running the same clothes in the washer for three days in a row because I'm too tired to get them in the dryer. I've succumbed to grocery delivery, and let me tell you, strangers seldom pick the same bits of produce that you would. When I get my act together and eat well, get a bit of exercise, and make sure I talk to other humans every day, the fatigue seems to get better. During the worst of it, I slept in my day clothes because it hurt my back to be wiggling in and out of garments.
3. Don't look at Off Week as the fun week. It's not. It is recovery week, for reals. My best weeks are the first two in the cycle. I know we are all supposed to hate on the steroids, but they beat the pain back and jump start me with a bit of energy.
I've just finished my third cycle of three on/one off. TMs have dropped by 150. I'm either learning to manage the SEs better or they are getting less worse.
I'm getting CAT scan results tomorrow, so let's see what the magic tube says.
Jennifer
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Ladies thank you for making me actually stop thinking I was crazy-this fatigue is enough to make you think so! Your posts helped me feel "not so alone" and I even got to chuckle a bit-thanks Jennifer!. I had my H/N treatment on Friday and was still so lethargic and achy today that I had to call out of work (which just made me feel worse). I keep telling myself to take one day at a time but having no energy AT ALL makes that a bit challenging. Hoping tomorrow my body will make a huge comeback and I'll be up and about again (I'm trying to go with that "positive thinking" idea-who knows maybe it might work). Jennifer wishing you happy, healing thoughts in the "magic tube"-let us know how you make out
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Navy Bean Gang,
Had the appointment with MO today. My scans are stable with a slight edge to improving. According to MO, the reporting radiologist is a bit of a Debbie Downer, because if he were to write the report, he would say that the tumor volume is getting smaller. TMs have dropped by about 300 now.
No one can figure out what the heck is causing the RUQ pain. Can't figure anything out on the CAT scan. MO thinks that it is liver capsule pain affecting gallbladder/pancreas. If that can be connected with the fact that eating causes the pain, I guess I'll have to agree. But, my liver mets are on the opposite part of my liver to gallbladder/pancreas.
So, we'll go with good old fashioned "RUQ pain, etiology unknown".
PS: Spouse has had a cold for three whole days now. I may have to kill him. He's not used to his body misbehaving on him, and he is grumpy.
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Jennifer - so glad to see your positive results! TMs down a good amount too. Happy dance! Thank you for your enlightenment on Navelbine too. In just a few words to summarize Navelbine: it sucks! (I will say you totally rock though and make me laugh, which I needed.)
Gals, I'm meeting with the PA tomorrow before my Navelbine infusion. I just can not go on like this. I'm weak, appetite not good, have nada for energy, and just overall feel crappy. This is the first time EVER that I've had to have a discussion with doctor about having to make a chemo change before we know the treatment isn't working. I just can't live like this where I'm on the couch 24/7. Usually on every other chemo, I have a few bad days after chemo and then I start to feel better. I have yet to ever feel better on this! Week off was just as horrible. It is ridiculous. So far, one month of feeling like crap every damn day - zero QOL. I guess my body doesn't like it and my ascites are building once again. I'll keep you updated as to what PA says. I feel so defeated.....
PS. I'm assuming it's the Navelbine and not the Herceptin. That's a whole other story.....
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SS:
The first month nearly killed me. No energy. I was as one with the sofa. I had to stop to catch my breath after going up the stairs.
The second month, I was still spending far too much time staring at things: walls, TV, books, but I started feeling like doing some chores. Or maybe i just got tired of how my husband was doing the laundry. We both have opinions, you see.
Month three: Could it be? Am I actually taking the dog out? She's shocked and amazed. So am I.
On the other hand, I have to nap now, or I'm going to start drooling.
Jennifer
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Hey Jennifer - good to hear you have survived into Month 3 and maybe have turned a corner on this dreadful chemo. Honestly, you are an inspiration! I’m not so sure for me staying on Navelbine. We decided on no Navelbine for me today. I’m skipping this week and then next week will be my off week. PA wants to ensure this havoc is being caused by Navelbine and not just my tumor burden. (My tumor burden kind-of exploded in late July when Halaven stopped working. Then I was off chemo for a month waiting on Mayo appt.)
I pray I do feel better in the next 2 weeks, so we can identify Navelbine as the culprit. I need it to be Navelbine, so we can make an informed decision on next steps. I’ve had a lot going on besides chemo with appointments for draining my ascites (3rd one this Friday) and surgery for both eyes for cataracts (2nd eye surgery on Monday.) I know you can relate to the cataracts. All these appointments are just thoroughly exhausting!
Take care all - this is not an easy haul.
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Hello All,
After 15 cycles on Doxil my tumor markers have increased, but more importantly, my liver enzymes have shot from low normal to all quite a bit elevated. Sigh. Time for a new drug. I have one MO saying Navelbine should be my next move. Another MO states that I should consider doing Halaven. I know everyone reacts differently to different drugs but in reading the last few posts — it seems like this is a pretty tough chemo. Any thoughts if you have experience with both of these would be greatly appreciated.
MRI (for persistent headache) and PET scheduled for Friday morning. I expect progression but am hoping to avoid brain mets. Trying not to be too frightened right now. Doxil has been the only drug that has worked for me so I am working hard at trying to stay balanced
Warm blessings,
Kimberly
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Hi Kimberly,
I was on Halaven for a year and, as you probably read from above, just started Navelbine on 9/5. Based on my experience, I would pick Halaven in a heartbeat over Navelbine. On Halaven, I did have a few couch/bed days after each infusion, but otherwise felt pretty good. It was 2 weeks on, one week off. My off week was good. Navelbine has been the worst chemo so far I've ever had. Fatigue and exhaustion has been unbearable for me every single day. I was not expecting the difficulty on Navelbine - very disappointing when QOL is so bad. I am taking Navelbine with Herceptin, so I'm not sure how Herceptin is contributing to my issues.
Good luck on whichever you choose. As you know, our experiences/side effects are all a bit different.
Southern (Sheri)
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Dear SouthernSurvivor,
Well, dangit, I hope it's the Navelbine too. If the Herceptin were causing trouble, wouldn't it be more cardiac related?
Sometimes I think when we go into a new chemo with an existing tumor burden, that the new chemo can make us feel crappy as it beats back the cancer. I mean, there's going to be site specific inflammation, then our kidneys have to process and excrete the dead cells. Our bone marrow has to rebound from the chemo. All in all, it's a fairly big process.
Good luck with the cataract surgery. While it is a total pain in the fanny, the results are worth it. All I remember now is the never-ending eye drops. But, I can see clearly out of both eyes, and my night vision is much improved. Worth it!
The cat has decided that he needs to be on my lap, not the stupid computer. I am bending to his will.
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Jennifer, I agree 100% with what you said about starting a new chemo with existing tumor burden. I think that is what the PA is worried about. I think the cancer got a few steps ahead of me and now I’m paying the price and catch-up is not easy. Still feel poorly today. I’m worried that this is my life now. ☹️
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SS:
If you just started Navelbine on 9/5, you are still in the cruddy portion of the event! That first month was terrible. I really thought that if that's how it was going to be on Navelbine, that I couldn't do it. It. Was. Awful.
Like you, I'd been off of chemo for about two months previously due to bad timing on a trial attempt. By the time I got to Navelbine, it had some work to do. TBH: In the first month, there was a week where I didn't really change clothing, or bathe much. It was bad. It is much better now, or I would no longer be on Navelbine. I lost 11 pounds that month, because of gastric troubles, and cooking was just too hard.
What's the word from your medical team? Hope you feel better soon, because I would not go through that first month again for giant piles of money.
Jennifer
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Hi Jennifer-
Hope you are having a good weekend.
Well, my medical team is not going to make a decision until I see them again in 1 1/2 weeks. I just saw the PA as my MO was out that day and the hope is I’m feeling better when I see them at that time. If I am better, we will assume the energy zapper is Navelbine and we may do a dose reduction or lesser doses in general (i.e. once every 3 weeks vs twice every 3 weeks.) I’m not sure at this point. I don’t want to give up on Navelbine if it’s working (nor do I really have that luxury) but I also don’t want to live on my couch 24/7. I’m banking on your experience that it will get better. I’m still on schedule with the Herceptin, as it’s only once every 3 weeks.
Today is Sunday and I’m 4 days out from when I was supposed to have chemo last Wed and I still don’t feel that much better. I do maybe have a bit more energy. Of course, had ascites drained on Friday, which is good but tiring too. Cataract surgery tomorrow, then no other appointments the remainder of the week. I’ve lost almost 20 lbs in the last 2 months, which is another contributing factor to my weakness. Not that I couldn’t stand to lose it, but not really the way and timing that I would have liked to lose it. I’ve been laying around so much that now my back is absolutely killing me. I swear this MBC is a constant battle with every part of my body.
I do appreciate the encouragement. I’m really having a difficult time with this one. First time I have ever asked for a dose reduction or skipping a chemo in 4 3/4 years since I was diagnosed Stage IV. Ugh.
Sorry y’all - hope next week I’ll be less of a “Debbie Downer.”
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SS,
How is it going for you? I was sitting here on the sofa (big surprise), counting out the moments till I can take more pain meds, and thought of you. I know you haven't had the "let's review things" appointment, but is your QOL getting better?
Jennifer
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Hi Ladies - Just wanted to give an update. I am starting month 3 (end of cycle 4) of Navelbine, and hoping that month 3 will be a little easier (per Jennifer's experience). I actually feel better hearing that others are struggling on this drug, because my MO keeps telling me that this is an "easy" chemo, which makes me annoyed. I had a scan last week and it pretty much matched my tumor markers (which went down a little, then went back up a little these past 2 months). Scan showed that some of my "innumerable" bone lesions are now showing decreased activity, but some are showing increased activity. There are no new areas/lesions seen though, so basically it's stable, on a net basis. So, I continue with the Navelbine, but may have a scan again a little earlier than normal, depending on what TMs show.
Kimberly - How did your scans go?
SS: Really hope things start improving for you!
Had my treatment yesterday and worked from home in my PJs all day today, but have to go get dressed now as I think people will be alarmed if I show up to my daughter's volleyball game in PJs, lol. Should probably also shower.
- Lisa
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Hi Jennifer -
Well, I haven’t had chemo for 2 weeks and 2 days, and my QOL still isn’t very good. I felt really bad earlier in the week and got pain meds, which have helped a lot. Now I think I have a UTI (rarely ever have them) and my doctor called in an antibiotic, so hopefully I self-diagnosed correctly. They wanted me to come in for a urine sample but I said I just didn’t feel well enough and would they go ahead and call in a prescription. They did. At this point, I’m praying it’s a simple UTI and not something more serious. A previous scan (not the latest one) showed where my ureter was starting to be collapsed by the cancer pushing on it, causing a problem for my left kidney to swell a bit.
With all that said, I have no idea what we will decide on Wednesday. I do feel somewhat stronger than a few weeks ago, but still haven’t felt like doing anything at all. Just feel pretty much like lying on the couch all day. I’ve tried to walk a bit around my yard to build some strength. Coming to the realization that my cancer is greatly interfering in my life now!! I say that sarcastically as I’ve been fighting a long time but truthfully haven’t been this bad in years.
Where is your pain? Your stomach? I was having bad back pain but honestly I think it is mostly from lying on the couch too much. My stomach was also a problem earlier in the week. Considering all my cancer is in my stomach, that is not a surprise. The pain meds take the edge off, which I need.
Hoping we both feel at least a little better this weekend. Thanks for checking in.
Hugs, Southern
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SS-so sorry to hear that your still struggling a lot-the big "C" just plain sucks!!! All I can say, it that I've been trying to walk (as much as possible) throughout the day (since all the articles focus on the fact that it may help reduce fatigue-although I'm not sure if the people writing that stuff actually are on chemo!). Hope it's just a UTI and nothing more challenging.
Lemondrop- on Friday, I'll start my 3rd cycle. Like you, I'm hoping that this protocol will get easier as we continue on in the months to come. My MO said the same damn thing about this being an "easier" option (NOT!!!!). After the first two treatments, I began to think I was the crazy one or that my body was just wimping out after so many different drugs during the last 8 years on and off. So I guess the old adage-"misery loves company" is the truth right now b/c hearing from you all helps me not feel so "wimpy" when I just can't get off the couch on some days. Navigating working has been quite challenging (since I work in a school and physically have to be there to counsel students). Lemondrop, just curious-how old is your daughter. Mine is 17 and as a high school Sr. we are "embarking" on the "college search" and application process-talk about exhausting!!!!! LOL! Wishing everyone a good weekend
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Fran - Oh, boy - yes, I have heard about just how exhausting the college search/application process can be. I have a son who is 15 and a sophomore, a daughter who is 12 in seventh grade, and a daughter who is 10 and in fifth grade.
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Hi gals - good to hear from a few more of us on Navelbine. Fran and Lisa, I’m also glad (relatively) to hear y’all don’t think it’s easy either - not sure why my MO didn’t warn me about this protocol??!! How is everyone doing? Jennifer - any updates?
So, MO wants me sticking to this protocol. He’s thinking it will get easier for me (we will see) and it seems to be working according to my TMs. They only dropped 11 points this time but I did skip my 2nd dose of Navelbine last cycle. Yesterday I had Herceptin, Navelbine, and a huge bag of fluids. MO said I was dehydrated, which I’m sure he was right. We will see how my ascites do this week. It’s interesting since I had my ascites drained almost 2 weeks ago, I haven’t had more ascites AND I hadn’t had Navelbine either. Now that I had Navelbine again yesterday, I’ll see if the ascites come back.
I’m still taking pain meds, mostly for my back pain, as needed. I took some yesterday after being in the chemo recliner for 3 hours straight, I was miserable. I even put a pillow on my back and a heating pad for the 3 hours, but I guess being in the same position did me in. My UTI seems gone, so I guess I self-diagnosed correctly.
I have no appointments and no plans today - praise God! I’m planning on catching up on some recorded shows and resting - that is it.
Take care all - you are in my thoughts often.
Hugs, Southern 💕
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What sort of pain are you guys having on Navelbine? It seems to be making my gallbladder stuff worse, or maybe it's ramping up back pain?
Just wanted to do a quick survey to see if others are having unexplained pain. No one can explain why I'm having pain as the scans are stable (and really new, two weeks old) and my bloodwork doesn't explain anything.
I am taking gobs of pain meds, and living attached to a heating pad or cold pack. I can't really do much, as it makes the pain worse - even on the meds. I want to go outside and play!
Jennifer
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SS,
I'm glad to hear that you are on the mend. This is a tough protocol, but worth it if it's working, right?
All praise the recliner and a heating pad!
Jennifer
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Jennifer,
My stomach isn’t bad right now but my back seems to just ache. It’s not constant but I do take pain meds 1-2 times a day (they only last 3-4 hours.) Usually early afternoon and then maybe again around 8pm. I always have my heating pad on now, except for when I go to sleep at night. I’ve told my MO about the back ache and he is the one who prescribed the pain meds, but he doesn’t seem too concerned about it. I see him again on Tuesday and I’m going to ask him about it further. I thought it’s because I’m on the couch and not very mobile but, of course, it could be something much worse.
Also, I haven’t gone to the bathroom in days - don’t even remember the last time. Weird thing is I don’t even feel like I have to go. I know these pain meds are stopping me up. Seems I’ve gone from having the big D all the time to being constipated now. Great.....
I also look forward to hearing where/if others are having pain. I’m not used to having back pain and I hate it.
Hugs to all
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I haven’t had any pains, but my MO did tell me when I started on Navelbine in February that a lot of mets patients experience pain where they have lots of cancer spots. Is that where your pain is? My “only” cancer spots are my brain and breast. Since this doesn’t go up to the brain, head pains are not an issue but sometimes my breast does hurt, which feels very weird
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Bec- thanks for sharing that info. It may explain why under my arm (where my lymph node involvement is high) is causing me so much discomfort (although, this past week there has been some reduction in discomfort).
I'm in the waiting area at MSK in NJ awaiting my treatment. After a week of a UTI, followed by a yeast infection, I'm pretty sure my "lady parts" are just out to get me LOL!!!!!! If I'm up to it-I'm supposed to participate in the Making Strides walk for BC at the Jersey Shore. I always have such mixed emotions when I am there (while it is so touching that so many people are there to support us-I hate the color PINK)! Wishing everyone a good weekend ahead.
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Ok so I'm a bit of an emotional train wreck today! Yesterday I had my appt. with my MO and she was so darn positive. Based on the significantly reduced swelling in my arm, her feeling around my lymph nodes (which are now much "softer and flatter" upon examination-whatever that means), the MO was quite optimistic & we were both so happy that I appeared having a good initial response to Navelbine/Herceptin. THEN.. I wake up this morning (feeling the post chemo hangover and fatigue) and my tumor marker bloodwork is posted. My CEA rose from 12.2 to 21.6 & my CA 15-3 went from 6 to 8 (in just three weeks). I know most drs don't put a lot of stock in markers but in my mind this can't be a good sign-right????? So sick of this emotional rollercoaster........
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Fran,
Are your TMs diagnostic? Meaning, have they been correct in that past as to whether you have a progression or regression? There is a lot of stuff that can fiddle with TMs, like a viral illness, arthritis flare, etc. Your MO is going to want to see a trend before they can truly say that you are progressing.
It is hateful, but this is - probably - a watch and wait situation.
All the best,
Jennifer
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Just a note on our friend, Navelbind:
I have been having big pain in my abdominal area, for a couple of months. Funny, since I started Navelbine.
So, at yesterday's infusion appointment, I told the team that just couldn't live like that. It hurt to stand, hurt to walk, all the hurts. So, they threw me into the CAT scanner to see if they could find anything. Granted, I'd just had a full scan three weeks ago.
It turns out that I am full of poop. I had been having movements, but - apparently - not enough. According to the NP, I was full of it from stem to stern. So, I was sent home with the command to take Lactulose, quite a lot of it, and to make an appointment in the lavatory.
Did it, and it is helping. So, just a warning that you can be hella constipated, and still have BMs. And, if you have too much of the stuff, it can push on organs and be quite painful.
By the way, the nurse's note for that condition is: FOS
Jennifer
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Fran - so sorry for the TM results but I do agree with Jennifer. Are your TMs usually a good predictor of any cancer progression? For some people, TMs are a great indicator and for others they mean absolutely nothing. It’s hard when our minds always go to the worst place! I hate being on the roller coaster too.
Becs - thanks for the info. My cancer is all in my stomach, so maybe that somewhat correlates to my back??
Jennifer - good insight on Navelbind. I’m not going like I need to and have an infusion again tomorrow. I’m going to take a laxative today and probably one tomorrow too. Gosh, I go from the big D previously to the big C now. Super annoying. (I do like the FOS diagnosis though.)
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