HER2 Support Group Forums - View Single Post - Contralateral/Bilateral Tumor while on Herceptin?

08-20-2005, 11:29 PM

very, very interesting...

very complex as well, I'll bet. Thanks for supplying me with the additional information. That was very kind of you, but again, my main area of focus is ER-/PR- Her-2 3+. I wish I could recommend a GOOD onc but I really don't know any...that is supposed to be a bad joke..smile.

Sometimes humor helps. Let me see if I got this right. Your wife got a second, unrelated but somewhat her-2 involved tumor in her other breast WHILE TAKING HERCEPTIN???!!!! Incredible. No need to respond as I do not wish to trouble you unless you want to continue this thread, but I was wondering aloud, were you able to be seeing her tumor markers on a regular basis, at least the CA 27/29 which is often involved in her-2 cases? The one way I can think this could have happened is if her markers weren't being regularly checked and if somehow, she was not getting the right dosing of herceptin. When you are her-2, especially +++, as was her first tumor, you really REALLY have to stay ahead of the disease by dosing sufficiently with Herceptin. Sufficiently to me means using as much as frequently as YOU need to keep ahead of the the numbers, to keep them in range. [you have to wrap your head around the fact that MANY of us who are her-2 positive have serum her-2 levels that will rise continuously and exponentially if we do nothing...that is why with her-2 involvement you can literally die in a few months if you get right on it....sigh] You also have to be sure that should you gain weight while being treated--as often happens to many of us, that your herceptin is ajusted appropriately. It is surprising what as little as 7 pounds off can do to spoil the pie. Also, if her case was terribly agressive, the usual loading dose of 4mg per Kg of body weight followed by weekly doses of 2mg may have never been sufficient to slow the original cancer. So the her-2 could have still have had some role in promoting the growth of the second tumor, even though the tumor itself has some different characteristics. Of course, with her ALSO being so highy ER positive on the first tumor, you have to accept that besides her-2 promoting stuff, estrogen OR progesterone could have been at work behind the scenes as well.... Keep in mind that MANY of us with her-2 +++ have tumors form in other places...usually called "mets" while on the drug...and have to adjust our dosage or add chemo to get back to NED..., but it is usually possible. The problem is one has to be so on top of her own case, constantly monitoring the tumor markers and scanning and constantly taking Herceptin, no matter what schedule you're on. I am really lucky right now...after 8 years wrestling with this disease I am taking herceptin alone only every 6 weeks and feel like I have gotten my life back. I have experienced mets in many places, but so far, not the other breast...hmmmmm....and of course, her doctors are NOT reading this as mets but as a new PRIMARY, I think. hmmm. Thanks for the info about the MRSA...doesn't sound related to the original cancer...I have been toying with it and other bacterial elements as possible mets promoters...a bit complicated, highly controversial. I would be interested to know --again, only if you and your wife are comfortable sharing, if prior to the FIRST tumor, did either of you experience stomach troubles, especially ulcers, or did EITHER of you have a bout of pneumonia that you can vividly recall, even a few years prior to diagnosis. I am also studying tuberculosis bac and Legionaire's disease in relation to certain cancers...did either of you ever live with or where a bird was or had been in the home, especially an African grey or other type of large parrot?? for any extended time (avian bac/ c. pneumonia). I am especially worried about the role of ports and other inserts in promoting the role of infections during treatements as while on chemo, counts go very low, as you duly noted. Also, there is always the body's tendency to try to reject foreign objects (ports) and breast implants...which contributes to gumming up the way the immune system functions, preventing it from working at optimum) Again, I think your wife is lucky to have you on her team. I will check in now and again to see how you are doing.

As far as treatment options--you could at least run some of these by several oncs, one of the first things I would try, but remember I am NO onc and can not prescribe would be...smile...

1. FIRST, find out how bad her CA 27/29 markers are in conjunction with her serum Her-2 levels...these are both simple, cheap blood tests...but sometimes you have to force the oncs to let her take them.

2. IF and only if it was for certain, she had out of range CA 27/29 and serum Her-2, here is what I would do if it were me:

3. First, I would have the onc prescribe for her a Z-pak just as a precaution to kill out any lingering bac she may have had or have picked up with all that surgery and chemo.

4. Once she completed the z-pak, I would start her IMMEDIATELY on a NEW LOADING DOSE of 8mg/per kilo of her current weight of herceptin, but VERY IMPORTANT, DON'T let her take ANY pre-meds with any herceptin. Another common reason herceptin fails is because oncs unknowingly continue administering the Benadryl prior to each Herceptin dose, week after week after week. Using it the first time somebody takes Herceptin is fine, just to avoid any chance of allergic reaction to the drug...but once it has been established that one is NOT allegic to herceptin (almost nobody is) Benadryl or other IMMUNE - suppressing drugs should NEVER be used in conjunction with Herceptin. This has to do with the way the herceptin works...it locks on to the her-2 receptors, but then one's immune system has to come along and clean up all the tumor debris, a very immuno- intense process which is hampered considerably by drugs like Benadryl suppressing the immune system when the body needs it fully functioning the most. When Herceptin was first released, Benadryl was never intended to be used with it at all..you can read all about it in the great book, THE MAKING of HERCEPTIN..., it was an afterthought of an onc --not a herceptin researcher...that added it to the pre-meds...Likewise, I highly discourage the use of Tylenol or other pain meds with Herceptin for liver reasons too lengthy to go into here. Important to keep the liver clean, strong and fully functioning.

5. The next week, move down to the 6mg per current body weight and administer Herceptin weekly thereafter at 6mg or 4mg or 2mg to keep the numbers down and in check. Ideally, keep the Ca 27/29 around 10 or so and the serum her-2 under 12. Use the amount and dosing frequency necessary to maintain this. At the very least, this should help reign in the her-2 promotion side of the primary cancers...obviously you are a bright man and it is not lost on you, that if now she has had two primaries, mets is a REAL concern.

6. Somehow, then, the ER+ first tumor and ER - second tumor needs to be addressed...perhaps the best way is to forget about the ER part and just go after the PR + part. I do not know what the protocol is when someone is PR +, but whatever it is, she should follow it...sounds like she may have been taking Tamoxifen or something for the first primary that apparently may have kept the estrogen in check as the second primary, does not seem to have the full-blown estrogen component...Perhaps she should continue whatever she was doing to address the estrogen part as a continued precaution. Interestly, the her-2 component was a little less...one has to ask if the Herceptin she was taking had ANYTHING to do with that??? Puzzling...this case is...smile....

7. Even though no one gives much credence any more to bacteria as fundamental cancer roots..., it has been my observation over the years, that folks who treat their breast cancer (regardless of type) more as an infection, than a "typical cancer" live longer...what I mean by that is those who eat immune -boosting things, walk or take other exercise, get plenty of sunshine for vitamin D, drink clean water, and in general, refuse (as much as possible) pain and other non-essential meds which can, like Benadryl dampen the immune response...well, those folks just do better and have a higher QOL, in general... a great sense of humor and a Candide-like sense of NAIVE optimism (of which I am blessed in abundance...smile) doesn't hurt either...smile.

Seriously, if it were me lying where she is, these are definitely things I would at least consider. Best of luck to you, keep us all posted...we do care. Gina

08-20-2005, 11:29 PM	#7
Gina Guest Posts: n/a	very, very interesting... very complex as well, I'll bet. Thanks for supplying me with the additional information. That was very kind of you, but again, my main area of focus is ER-/PR- Her-2 3+. I wish I could recommend a GOOD onc but I really don't know any...that is supposed to be a bad joke..smile. Sometimes humor helps. Let me see if I got this right. Your wife got a second, unrelated but somewhat her-2 involved tumor in her other breast WHILE TAKING HERCEPTIN???!!!! Incredible. No need to respond as I do not wish to trouble you unless you want to continue this thread, but I was wondering aloud, were you able to be seeing her tumor markers on a regular basis, at least the CA 27/29 which is often involved in her-2 cases? The one way I can think this could have happened is if her markers weren't being regularly checked and if somehow, she was not getting the right dosing of herceptin. When you are her-2, especially +++, as was her first tumor, you really REALLY have to stay ahead of the disease by dosing sufficiently with Herceptin. Sufficiently to me means using as much as frequently as YOU need to keep ahead of the the numbers, to keep them in range. [you have to wrap your head around the fact that MANY of us who are her-2 positive have serum her-2 levels that will rise continuously and exponentially if we do nothing...that is why with her-2 involvement you can literally die in a few months if you get right on it....sigh] You also have to be sure that should you gain weight while being treated--as often happens to many of us, that your herceptin is ajusted appropriately. It is surprising what as little as 7 pounds off can do to spoil the pie. Also, if her case was terribly agressive, the usual loading dose of 4mg per Kg of body weight followed by weekly doses of 2mg may have never been sufficient to slow the original cancer. So the her-2 could have still have had some role in promoting the growth of the second tumor, even though the tumor itself has some different characteristics. Of course, with her ALSO being so highy ER positive on the first tumor, you have to accept that besides her-2 promoting stuff, estrogen OR progesterone could have been at work behind the scenes as well.... Keep in mind that MANY of us with her-2 +++ have tumors form in other places...usually called "mets" while on the drug...and have to adjust our dosage or add chemo to get back to NED..., but it is usually possible. The problem is one has to be so on top of her own case, constantly monitoring the tumor markers and scanning and constantly taking Herceptin, no matter what schedule you're on. I am really lucky right now...after 8 years wrestling with this disease I am taking herceptin alone only every 6 weeks and feel like I have gotten my life back. I have experienced mets in many places, but so far, not the other breast...hmmmmm....and of course, her doctors are NOT reading this as mets but as a new PRIMARY, I think. hmmm. Thanks for the info about the MRSA...doesn't sound related to the original cancer...I have been toying with it and other bacterial elements as possible mets promoters...a bit complicated, highly controversial. I would be interested to know --again, only if you and your wife are comfortable sharing, if prior to the FIRST tumor, did either of you experience stomach troubles, especially ulcers, or did EITHER of you have a bout of pneumonia that you can vividly recall, even a few years prior to diagnosis. I am also studying tuberculosis bac and Legionaire's disease in relation to certain cancers...did either of you ever live with or where a bird was or had been in the home, especially an African grey or other type of large parrot?? for any extended time (avian bac/ c. pneumonia). I am especially worried about the role of ports and other inserts in promoting the role of infections during treatements as while on chemo, counts go very low, as you duly noted. Also, there is always the body's tendency to try to reject foreign objects (ports) and breast implants...which contributes to gumming up the way the immune system functions, preventing it from working at optimum) Again, I think your wife is lucky to have you on her team. I will check in now and again to see how you are doing. As far as treatment options--you could at least run some of these by several oncs, one of the first things I would try, but remember I am NO onc and can not prescribe would be...smile... 1. FIRST, find out how bad her CA 27/29 markers are in conjunction with her serum Her-2 levels...these are both simple, cheap blood tests...but sometimes you have to force the oncs to let her take them. 2. IF and only if it was for certain, she had out of range CA 27/29 and serum Her-2, here is what I would do if it were me: 3. First, I would have the onc prescribe for her a Z-pak just as a precaution to kill out any lingering bac she may have had or have picked up with all that surgery and chemo. 4. Once she completed the z-pak, I would start her IMMEDIATELY on a NEW LOADING DOSE of 8mg/per kilo of her current weight of herceptin, but VERY IMPORTANT, DON'T let her take ANY pre-meds with any herceptin. Another common reason herceptin fails is because oncs unknowingly continue administering the Benadryl prior to each Herceptin dose, week after week after week. Using it the first time somebody takes Herceptin is fine, just to avoid any chance of allergic reaction to the drug...but once it has been established that one is NOT allegic to herceptin (almost nobody is) Benadryl or other IMMUNE - suppressing drugs should NEVER be used in conjunction with Herceptin. This has to do with the way the herceptin works...it locks on to the her-2 receptors, but then one's immune system has to come along and clean up all the tumor debris, a very immuno- intense process which is hampered considerably by drugs like Benadryl suppressing the immune system when the body needs it fully functioning the most. When Herceptin was first released, Benadryl was never intended to be used with it at all..you can read all about it in the great book, THE MAKING of HERCEPTIN..., it was an afterthought of an onc --not a herceptin researcher...that added it to the pre-meds...Likewise, I highly discourage the use of Tylenol or other pain meds with Herceptin for liver reasons too lengthy to go into here. Important to keep the liver clean, strong and fully functioning. 5. The next week, move down to the 6mg per current body weight and administer Herceptin weekly thereafter at 6mg or 4mg or 2mg to keep the numbers down and in check. Ideally, keep the Ca 27/29 around 10 or so and the serum her-2 under 12. Use the amount and dosing frequency necessary to maintain this. At the very least, this should help reign in the her-2 promotion side of the primary cancers...obviously you are a bright man and it is not lost on you, that if now she has had two primaries, mets is a REAL concern. 6. Somehow, then, the ER+ first tumor and ER - second tumor needs to be addressed...perhaps the best way is to forget about the ER part and just go after the PR + part. I do not know what the protocol is when someone is PR +, but whatever it is, she should follow it...sounds like she may have been taking Tamoxifen or something for the first primary that apparently may have kept the estrogen in check as the second primary, does not seem to have the full-blown estrogen component...Perhaps she should continue whatever she was doing to address the estrogen part as a continued precaution. Interestly, the her-2 component was a little less...one has to ask if the Herceptin she was taking had ANYTHING to do with that??? Puzzling...this case is...smile.... 7. Even though no one gives much credence any more to bacteria as fundamental cancer roots..., it has been my observation over the years, that folks who treat their breast cancer (regardless of type) more as an infection, than a "typical cancer" live longer...what I mean by that is those who eat immune -boosting things, walk or take other exercise, get plenty of sunshine for vitamin D, drink clean water, and in general, refuse (as much as possible) pain and other non-essential meds which can, like Benadryl dampen the immune response...well, those folks just do better and have a higher QOL, in general... a great sense of humor and a Candide-like sense of NAIVE optimism (of which I am blessed in abundance...smile) doesn't hurt either...smile. Seriously, if it were me lying where she is, these are definitely things I would at least consider. Best of luck to you, keep us all posted...we do care. Gina