Looking for Answers from Christine or other long term Herceptin users

[kstrahm]

Hi - I am new here (not sure where to post this so I this is the second place I have posted) - I am 36 and have stage IV breast cancer with liver mets. I have been taking Herceptin for this since April of 2006 so almost 6 years. My liver mets have been NED for awhile and I am starting to experience some symptoms of neuropathy in my hands and feet and my skin on my hands is peeling off daily as well as increased pain and head pain and a general unwell feeling. My doctor previously has said that I will stay on this drug forever. I will be seeing him in April and I am going to try and see if I can go off of it - I saw on another breast cancer board that Christine the founder of this board took Herceptin for about 8 years and after meeting with Dr. Dennis Slamon the oncologist who came up with the drug that she was able to stop it - I am wondering if this would be an option for me and also if I should try to go see Dr. Dennis Slamon for his opinion. I am hoping for some advice from Christine or from other long term Herceptin users. Thanks in advance for your help.

Hugs to all of you.

[Lani]

some have gone off herceptin after 7 or 8 years--there is a previous thread.

Try to use the search function above to look for it. As I recall all but one did just fine.

Neuropathy (late- developing) has not been described in those on herceptin for years from my reading although it may be on the herceptin label(occurrences as rare as 1 in 300,000 have to be listed) Those occuring in >10%% or >1% are usually listed as such).

Are you certain there is no other reason for your neuropathy? Herceptin has even been found helpful in leprosy where it can cause REmyelination!

Were/are you on any antihormonals? Even if not, chemo throws many/most into premature menopause and lack of estrogen can be a cause of dry peeling skin.

Are you taking any herbs/supplements? Those who make them are "grandfathered in" and don't have to put all ingredients on the label. There may be something in them or their "fillers" causing your symptoms. Many /most ingredients for them and even for pharmaceuticals are being outsourced to China where contamination could occur(think of the melamine in the cat food/ milk powder)

A trial of stopping everything but your herceptin may be in order--but then you didn't mention other health problems (diabetes could cause your symptoms) and of course you would not want to stop other medications without checking with your doctor.

Just food for thought

I am sure someone will chip in and find the link to the previous thread on stopping herceptin after years of use in Stage IVs. Good luck and let us know what Dr. Slamon says if you see him!

[Lani]

a quick use of the search function using "stopping herceptin" brought the following threads up among others--PLEASE PLEASE feel free to do a more extensive search.

We work hard to make this site a very inclusive repository of information, some of which can be found nowhere else ie, experiences listed by those who have been on herceptin for years is definitely one of those in fact Joe once started a thread as a pharmaceutical company (bet you can guess which) asked him to gather info from those on longterm herceptin about their complaints/side effects/problems:

http://her2support.org/vbulletin/showthread.php?t=50076&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=48504&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=51039&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=40954&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=42343&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=40912&highlight=stopping+herceptin

http://her2support.org/vbulletin/showthread.php?t=29016&highlight=stopping+herceptin

[ElaineM]

Have you tried B 6 for the neuropathy?
Aveeno daily moisturizing lotion is good for skin issues. It has oatmeal which is good for skin.
You can even find Aveeno bath products with oatmeal to soak your feet. It is very soothing and relaxing.
Another suggestion is calendula salve. Calenula is a flower in the marigold family.
Also if you can get some aloe vera jell or use some of the natural jell from the aloe vera plant that would be good too.
Stay alway from cosmetics with fragrances and alot of preservatives. Do not wash your hands or dishes in very hot water. Use lukewarm or cold water. You may even want to change your laundry and kitchen dish soap.
Think twice about stopping Herceptin !!
All the best to you. Take good care of yourself.

[CoolBreeze]

I've been on herceptin for 3 years alone and in combo with chemo drugs. It's not working for me, I'm glad it is for you!

Just a suggestion - when I was on taxol and began neuropathy, I did l-glutamine. There are been some studies done at UCLA that shows that it may help for that purpose. Can't hurt anyway. I will be taken l-glutamine again next week when I start Abraxane.

Good luck to you, I hope you find that you can go off medication.

[kstrahm]

Thanks for all the links - I have been reading some of them and they have been helpful. To give some more detail I do take Femara and have had a hysterectomy. I do not have diabetes but do have high cholesterol partly caused from the Femara I think - I am leaning toward thinking the wierd symptoms in the hands and feet are from the Herceptin because they are at their worst on Friday, Saturday and Sunday and Friday is my infusion day ~ it seems the symptoms start to lessen as the week goes on but about 4 hours after the next infusion the symptoms are really bad again - I will see the onc soon and am planning on bringing all of this up and may even seek a second opinion to see what to do. Thanks for all of your support and links with good info that I can go to. Hugs to all

[kstrahm]

Thanks for the tip on L-Glutamine - I will look into it - I am sorry that the Herceptin is not working for you - I do hope you find something that will work for you. Healing hugs coming your way