Navelbine hard to tolerate - 1267658

adrianm21
Posts:19

Hi

This is a follow-up to my earlier post called "Navelbine, good decision?" where I brought up my mum's case: NSCLC adenocarcinoma with EGFR mutation, where the 3rd line has been given Navelbine (Vinorelbinum).
After approximately 2 months of treatement, the latest CT revelead that most of tumours shrinked indeed, but the chemo side effects are hardly bearable.
Aside of pheripheral neuropathy, another problem is that on the hands where the medicine has been injected, she acuses high pain feeling like an infection or burning pain.
Could you please share some treatment or medicine that might ease the pain?
Lately she has been implanted a port cathether, but up to this moment, every time the treatment has been injected in hands vessels.

Your response will be highly appreciated

Thanks
Adrian

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Reply # - December 22, 2014, 05:21 PM

JimC
Posts: 2753

Hi Adrian,

I'm sorry to hear your mum is experiencing this pain. Placing a warm compress on the area of the site may help, and it's a good idea to discuss this with her oncologist, who may have other suggestions such as a different infusion site or slower infusion rate if possible. She may be able to tolerate the infusions better when the port is used.

JimC
Forum moderator

Reply # - December 22, 2014, 08:07 PM

Dr West
Posts: 4735

This is a medication that is only administered via a central line like a portacath or PICC line because it is so damaging to the smaller peripheral veins. I'm sorry for the pain she has endured, and I think the most important thing to help her is to only administer this chemotherapy through a central line.

I hope she can have an easier time with Navelbine (vinorelbine) through the port and continue to benefit from the anticancer effects of the treatment.

Good luck.
-Dr. West

Reply # - January 7, 2015, 11:46 AM

adrianm21
Posts: 19

Hi

Thanks for the suggestion. The pills were the first option, but my mother couldn't bear with it due to sever abdominal pains.
Now with the portcatheter hopefully the treatment will be more bearable.

Just one question, maybe someone reading this can help, or if it is a different topic, I may raise a new discussion: is anyone aware of any study who accept patients in Europe for an adenocarcinoma NSCLC, having a known exxon 19 mutation, previously treated with Tarceva a EGFR inhibitor?

Thanks in advance
Adrian

Reply # - January 7, 2015, 02:33 PM

catdander
Posts:

There are many trials available for those who have an acquired resistance to the first generation of TKI drugs, tarceva and iressa. A key factor to many of the studies is whether or not the resistance is due to the addition of a T790M mutation.

https://clinicaltrials.gov/ct2/results/refine The previous link can give you an idea of what's available in your area. You can add the pertinent info yourself including country to find trials available. The best way though is to speck with a large research hospital or such in the area where you're interested. They know best what's available and when. Without knowing more about her situation with iressa it's difficult to suggest availibel trials.

All best,
Janine

Reply # - January 7, 2015, 06:49 PM

Dr West
Posts: 4735

Another very promising agent is AZD9291, and I know that there are trials with it in Europe. In addition to rociletinib, this would be an appealing agent to pursue.

-Dr. West

Reply # - January 7, 2015, 10:24 PM

adrianm21
Posts: 19

Hi Everyone and thanks for your pointers.

As far as I understood above trials are for patients with EGFR resistance aquired and T790M Positive mutation. However, my question is: how to determine if she has T790M mutation? If she had the mutation when he first started Tarceva, it should have been determined when the genetic tests have been performed?
Or this mutation occurs somehow after the EGFR resistance is aquired? (sorry if I write none-sense here, but I don't hold medical studies)
Does it help if I write down here the code for her mutation or whatever have been written in the genetic test done 3 years ago when Tarceva was the drug given?
I am asking so many questions just to be sure i am persuing the right trial.
As for the hospital around our areas to ask for: there are only few doctors who run these kind of trials and they and even though they are hard to contact, not everytime they have the time to explain if a trial is or not suitable for a patient. Cruel reality, but this is how it is.
Thanks so much in advance.
Adrian

Reply # - January 8, 2015, 06:15 AM

JimC
Posts: 2753

Hi Adrian,

Although it is possible to have a T790M mutation from the outset, typically it occurs after treatment with an EGFR TKI such as Tarceva. It is often the cause of acquired resistance and is identified through molecular testing of the tissue from a new biopsy.

For that reason, the trials you mention generally require a recent biopsy to determine the presence of the T790M mutation. You'll probably want to discuss the feasibility and advisability of such a biopsy with her oncologist.

JimC
Forum moderator

Reply # - January 8, 2015, 08:17 AM

Dr West
Posts: 4735

Yes, exactly. Only a very small proportion of patients with lung cancer have a "de novo" T790M mutation at the time of diagnosis, pre-EGFR inhibitor therapy. These patients tend to not do well with Tarceva (gefitinib) or Iressa (gefitinib), though they should have a much better chance of doing well with AZD9291 or rociletinib.

In contrast, T790M is far more commonly seen as a mechanism of "acquired resistance" that develops over the time it takes for a patient to become resistant to a previously effective oral EGFR inhibitor. So the key is to obtain tissue from an area progressing on EGFR tyrosine kinase inhibitor (TKI) therapy.

Good luck.

-Dr. West

Reply # - October 28, 2015, 12:18 AM

adrianm21
Posts: 19

Hi People,

A piece of update on my mother's condition. She is more than one year on Navelbine and by now her doctor noticed small progression on her tumors. In fact there is one noticeable spot next to the pulmonar artery (as I understand the CT comments), which has had a slight increase. Not sure though what got changed in last series of treatment as she accuses severe bone pains, which identify as neuropathy. A bit of history on this, maybe it helps: along the past 6 months of treatment, she was given Navelbine weekly with two weeks pause at each three weeks. However from time to time (maybe twice during this period) she noticed the nurse didn't actually used the medicine when giving her the injection. With this in mind I was thinking maybe it was the doctor strategy to use sort of a placebo from time to time to have the medicine being bearable.
Anyhow, after these episodes, she reported the nurse and got changed to another and almost since then, the bone pains became not bearable and this is happening mostly during the night.
Would someone experiencing the same issues, would be able to share what could help her better tolerate Navelbine?
Will a prolonged treatment pause be dangerous in this case?
Looking forward to your kind feedback.

Thanks
Adrian

Reply # - October 28, 2015, 05:54 AM

cards7up
Posts: 635

Adrian, no one here would have any idea if the doctor there is using a placebo. It sounds unreal, but I don't know your country or your healthcare system. I can say that there are 23 clinical trials in the Romania area. You can peruse them and see if any might be available to your mother and discuss with her doctor. Wishing her the best. Take care, Judy
https://clinicaltrials.gov/ct2/results?term=nsclc+and+romania&recr=Open…

I am not a medical professional nor moderator. I am a lung cancer survivor.

Reply # - October 28, 2015, 06:55 AM

JimC
Posts: 2753

Hi Adrian,

As Judy said, there's no way to know whether your mother was getting Navelbine at each infusion date, but whether it's a strategy to reduce side effects is certainly something you could ask her doctor.

If neuropathy is so severe as to be intolerable, then as Judy suggested she may want to change therapy, especially if her cancer has begun to progress. A clinical trial is always a possibility, as there are many new, promising treatments being studied. In light of the current progression a change of therapy might be preferred as opposed to a prolonged treatment break (and subsequent return to Navelbine).

In either event, I hope she is able to get some relief from the discomfort of neuropathy.

JimC
Forum moderator

Reply # - October 28, 2015, 07:38 AM

adrianm21
Posts: 19

Thanks for all your messages.
Last minute update: the doctor was saying the pains are not caused by neuropathy, but could be bone mets??!! On this regard, she suggested a bone scintigraphy which would reveal if any mets.
However I wonder how the mets pain would trigger only during night, when the pain becomes unbearable.
As for the list of ongoing trials in Romania, I have had a look and will search further on, but couldn't find anything to suit her situation:
1. Erlotinib for 11 months in a trial (EGFR exon 19 confirmed)
2. Alimta plus Cisplatin given by medical state organization
3. Navelbine also given by medical state organization

Apparently what puzzles the doctor to give her the Erlotinib or Gefitinib as a re-occurrence is the fact the drug won't be approved by the Romanian medical organization as a 4th line of treatment...
Iressa is not even included on the list of given medicines.
I was able to find an Iressa trial in Netherland, but they claim we are too far to include here, causing too much hassle on the planes at each three weeks.

Any pointer will be highly appreciated as I am getting desperate.

Thanks in advance
Adrian

Reply # - October 29, 2015, 07:37 AM

catdander
Posts:

Adrian,

Neuropathic pain can be caused by navelbine and is usually controlled by stopping that particular treatment. If your mom didn't progress on Alimta it may be an option to use alone, many people find it much easier to tolerate than other treatments. Gemzar may be another option. Immunotherapy has been shown to hold the best promise as 2nd and later line of treatment.

Pain from bone mets can often be stopped completely from radiation treatment to the site of progression if possible. Medication such as gabapentin can be tried for neuropathy if it persists after stopping chemo but it almost always continues to worsen on the offending treatment. There are different types of opiate pain killers that may cause less stress on your mom's stomach. It's always a good idea to try to work with the oncologist to find the best way to help maintain your mom's comfort.

I hope your mom finds relief soon.

Janine

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