side effects?

[Celina]

Hi Everyone,
My sister started her new chemo combo: Navelbine and Herceptin. (She currently has mets to bones, liver and brain) Anyone who is currenty on Navelbine or has been on it:
1) constipation: is this a common side-effect? My sister is experiencing this side effect...with much tenderness in the abdomen area....adjusting her diet doesn't seem to be sufficient..she has been perscribed a drug to help, but she is reluctant to take anything because of her liver.
2) she has been quite surprised with the amount of bone/body ache she is experiencing. She was told that it would be far less than what she had experienced on taxol, but she said that it has been quite bothersome...she's had to take mutliple Advil (and for my sister to take ANY pain meds is remarkable). The curious thing is that the first time, the pain set in 2 to 3 days after chemo....this past week it was 5 days after. Is this commom?

I love this new site! I'm thrilled to have it..it's like a safety net for me.

By the way, my sister had a clear chest scan last week....20 liesons on the brain remain, but are stable. Her blood work indicates a huge improvement in her liver..she's at the high level of normal. Hooray!! Her doctor is attending the San Antonio Breast Cancer Symposium with her in mind. We remain hopeful.

[Lolly]

Celina,
Wow! Good news, I'm thrilled for you and sis.

The constipation and abdominal pain were a side effect for me both times on Navelbine; I ended up finding relief for the constipation by taking a psyllium product every day. Metamucil is one, but there are less expensive store brands available. Psyllium is a natural seed, it's ground into a powder to mix into water to drink, and it worked great for me. Some brands have flavoring and color added, usually artificial, but the totally natural powder can usually be found at a health food store, and although mixes better with water, juice can be added for flavor.
The abdominal pain seemed to abate once I got the constipation under control.
The body aches and pains are common, for me they occured by the 3rd day, and usually tapered off by the 4th or 5th day. Towards the end of my 6 month regimen this time, they had all but dissapeared.

I am so glad for your sister, she's doing great and you have every reason to remain hopeful!

Love, Lolly

[Guest-Cindi_*]

Celina,

I agree with Lolly. I had the same side effects. The body aches were miserable. I went off celebrex so I could do Advil around the clock and then on the off hours I would also take Tylenol for the pain.

I will pray that your sister adjusts to the Navelbine soon. The constipation was definitely a constant situation. I know that there is a new product on the market to combat this problem, but I never got to the point of needing it. Sorry I have forgotten the name. I think it starts with an "S".

So happy to hear that your sisters' chest sccan was clear. She sounds like such a fighter, as do you. Keep up the Good Fight!

Cindi.

[Guest]

Thanks Lolly and Cindi,
It's good to know that her symptoms are typical. I get the sense that she was quite worried. How intense was your body and abdomen pain? She's not able to sleep during the night because the pain is so intense. I hope she won't have to be taken off Navelbine for this.
Thanks again, ladies!

[beatrice]

I did not have pain at all. Actually I also went skiing and travelled quite often (for work). I did have a slight constipation, for which I took some herbal remedies which helped me a lot. (by the way, I was on Hercep+Navelbine for almost a year, on a weekly basis).
Hope you are well, best of luck, Beatrice

[Isabelle]

I am responding to query about side effects of Herceptin/Navelbine. I have been taking both weekly and add Zometa once a month since Feb. 2004. I have mets, or had mets, to bones, liver, lungs. All virtually gone at the moment. It is definitely worth it to stay on this combo. even if you get achey. Take a warm bath, take some advil or tylenol as needed.

At first I was having lots of side effects to the treatments because the clinic I went to was insisting on giving me decadron (steroid) and zofran (anti-nausea drug that causes constipation!) with each treatment. These drugs were given to me to prevent side effects but they were what was giving me horrible side effects! I convinced my doctory there, on advice of another oncologist I see, to stop these side effect drugs and I have done much better.

After ten months of weekly treatment, I am able to see that I pretty consistently get achey after. It was for about 3 to 5 days after treatment. I think I get achey because the navelbine gets kills my white and red blood cells too and my immunity is getting low and my body is making my bones make cells, and that makes me achey in spine, shoulders, hips. It feels like you are coming down with a bad cold or flu.

Navelbine can beat down your immunity and has in my case. I am no longer able to bounce back to normal blood counts each week so we are reducing my dose by 20% and keeping going weekly since I am doing great on this.

Good luck,
Isabelle

[al from canada]

My wife Linda has the same classical side effects: aching bones for 4-5 days and constipation. She has to have 4 - 5 shots of Neupogen per week to keep her blood counts up. It's the nature of the beast I guess but it's sure better that loosing your hair and trowing-up.
Al

[mamacze]

Hi Celina,
First tell your sister to hang in there and to think of the aches and pain as her inflammatory response giving the cancer hell!
I have been on Navelbine and herceptin weekly since April for mets to the lungs. Aches and pains were common, but handled with tylenol. Procrit helped with the washed out feeling when my blood counts were low. Sometimes if I was fighting a bug I would get the shakes and chills; but again, Tylenol worked pretty well.
Tell your sister to be strong; how lucky she is to have you.
Hugs and Blessings,
mamacze (kim from cT)

[marie]

Hi there,

I've been on Navelbine+Herceptin for 30 months now, first weekly and now every other week. I had liver mets so dense it looked like fish and chips paper on my CT scans. I had immediate tumor shrinkage and have been in total remission for over 2 years, with NED. Amazing results given that I don't get nausious or have hair loss. Looking at me you have no idea I'm a cancer patient. It's my first line treatment for mets.

But it's not completely w/o side effects. I don't have GI issues, except the day of treatment. I don't get any premeds for either drug. Are you getting steriods? wonder if that's doing it? My main problem is that I don't bounce back from body trauma as quickly as I used to ... I really have to be careful when I cut, bruise or otherwise damage myself. And I get more allergies. My immune system is obviously hammered. I can also tell it's messing with my nervous system -- I get muscle cramps in my legs, coughing fits and jaw spasms, I'm numb behind my toes, and I can't taste anything. Also I seem to be burning myself more easily while cooking than I used to, and not feeling it. Either my nerves isn't picking it up, or my skin is thinner. I can't tell. And I do get some body aches sometimes, I think mostly when my bone marrow is really working hard. Sometimes I get Aranesp shots, when my reds go too low. But never anything for the white blood cells.

But all in all, for me, it's been amazing. These side effects sound awful, but the're actually pretty subtle and are really manageable, compared with what Adria, cytoxan or the taxanes are like.

I wonder if you should talk to your MD about any premeds you are taking. And I would also look at the dosing. I'm about 135 lbs, and get 40 mg. I think. (125 mg/m3 ???) Every other week. You may be getting too much.

Good luck!!

marie

[Cindi]

Celina,

My abdominal pain was just always there. Sometimes I attributed it to the constipation, other times to the Navelbine (and then mix in the muscle aches that my Neupogen shots brought on). I DID have to finally complain about the pain level. The wanted to prescibe Vicadin, but I didn't like that medication...gave me headaches. But, check with the onc. maybe there would be a pain relief that your sister could take just in the evenings, since you describe her pain level to be high then. At least she may be able to sleep better. She DEFINTELY needs her sleep to keep her strength level up.

Peace to you.

Cindi.

Profile:

Diagnosed 4/2002 in Toledo Ohio, left mastectomy, lymph node dissection, Age 41.
Stage 2A, 1/11 node pos, ER-/PR-, HER2+++
Tx at Cleveland Clinic beginning May 2002, received AC, then 12 weekly Taxol treatments. Then 52 weeks of Herceptin through trial (completed 11/03)
6/2003 - Moved to Saginaw MI in June 2003, to be nearer to family.
5/24/04 – Locoregional Recurrence to axillary lymphs . A total of 2 nodes
found under arm. This was discovered by my onc at the time, Dr. Ernie Balcueva.
CT, Bone scans showed no other areas involved. PET/CT Fusion scan showed 2 other
nodes in third level of axillary nodes, again no other areas involved.
7/13/04 – Surgery at University of Michigan to remove 2 other nodes.
8/5/04 – Tx at University of Michigan with oncologist, Dr. Anne Schott, began +
Navelbine/Herceptin treatment…3 weeks on / 1 week off for 4 months.
10/4/04 – Punch biopsy positive for skin mets on left breast area (Doctor still thinks it’s
locoregional.) Had a mild rash that wouldn’t disappear.
10/28/04 – Began daily Hyperthermia radiation for 4-6 weeks for skin mets. Receiving 1000 mg. Xelodo too. Rash is disappearing, good progress. No negative skin reaction (yet). Receiving tx at St. Joe’s Mercy Hospital in Ann Arbor with Dr. Dutta. Expect Rads to be complete by 12/23/04. Then another PT/CT Scan is to be scheduled.

[Celina]

Thanks for all the replies. I read them all to her on the phone last night. (She still isn't able to read small text..eye specialists feel that MRI indicates that it doesn't appear to be related to her brain mets. Her vision had improved a great deal following WBR and now has worsened again, but because there are no new mets they don't know what's causing it..she's had numerous eye tests done..eye doc said that it could be the Taxol...he's had numerous patientswith minor neurological symtoms that could be a result of chemo, particularly taxol )
She did go for an ultrasound this week to make sure it wasn't something other than constipation that was causing severe abdomenal pain, but all is clear...nothing new in this area.
Thanks again for your replies.