First Time Marker Change When Starting Herceptin

[heblaj01]

I would like to find out how soon others on this forum had indication of a decrease in markers after starting Herceptin alone(preferably) or in combination with other drugs.
In the case of a relative with HER+3 she had a decrease of about 20% of her CEA (from 129 to 103) 15 days after the first Herceptin infusion. This cannot be a temporary fluke unrelated to treatment since she had 3 previous monthly escalating CEA readings increasing at the rate of 30 points per month & Herceptin is the only prescribed anti cancer drug she is taking.

If this drop is declared by responders as very unusual I would suspect that she was helped by self prescribed supplements which might confirm laboratory experimental results.

[Barbara H.]

Mine went right down to normal with a couple of treatments with Herceptin alone. Herceptin cleared all mets in the liver, lungs, lymph nodes according to a recent pet/ct scan. Unfortuanately, a year and a half later I now have small bone mets in three places. I have added Navelbine and Zometa to the Herceptin and after 3 infusions my markers are normal again.
Barbara H.

[heblaj01]

Thanks Barbara,

You provided not only one answer to my question (& I am glad that fast results are not rare with Herceptin alone even if this may shot down my assumption of help from supplements) but you also gave me additional info which may be vital for the future of the elderly relative I mentioned in my previous post.

She refused the original treatment proposal which would have been Herceptin+ Navelbine because of an instinctive fear of the side effects of the chemo Navelbine even though it would have been a low dose protocol.
Since a PET scan in october 2005 has detected 4 small (2 to 6mm) metastic sites in the spine she may eventually require a similar treatment to yours.
As a result of hearing about your successfull story she seems more receptive to the idea of the original proposal if Herceptin alone becomes insufficient.

In her case it was decided more than a year ago not to excise her last primary breast tumour (3cm) which was her 4th recurrence in 22 years.
No radiotherapy was done.Size remained unchanged for over a year.

I wonder if some forum members are or have been in this situation & how the primary tumour has responded to Herceptin alone (time to size reduction...) or to some other combo protocol?

[Barbara H.]

Hi,
Go to Gina's prior posts to find more information about using Herceptin alone. It does not work for everyone but my oncologist tried Herceptin alone because my daughter was getting married the same month I started it. That was in July of 04. It worked until February of this year when my markers started to inch up. Your relative should consider Zometa for bone mets.
I hope this information helps.
Barbara H.

[heblaj01]

Barbara,
I tried on several occasions to convince her onc & her osteoarthritis/osteoporosis specialist to prescribe Zometa before she got the bone mets but to no avail.
The reasons of their refusal (with 2 short term exceptions mentioned below) are not all clear to me but are as follows:
After she was successfully treated for about 20 months with Femara (she was then ER+, now HER+3) ,that is no reccurrence after her third lumpectomy & markers at lowest point (CEA 4.3), she had to stop due to osteoporosis, one cervical compression fracture & scoliosis. This was because her bones were not given protection by the best available drug at the time:Raloxifene. She was on the useless Didrocal.She was later given Clodronate I.V.'S for 6 months & finally due to a change in local oncology guidelines she was given two 6 month cycles of Zometa separated by a 6 month off period (so a total of 12 infusions over 18 months).
During this 6+18 months period she was not on any anticancer drug. Nevertheless, both Clodronate & more so Zometa caused CEA levels to drop from a high of 8.7. In fact it took only the first 4 Zometa IV's to achieve the same low point as Femara in 6 months. Despite the lack of anticancer treatment she had no recurrence in this 24 months period.
I naturely attributed this wonderful outcome (no tumour, bone microfractures repaired, osteoarthritis pain very much reduced,bone density increased, no obvious side effects) to Zometa. Later I discovered that experimental research had shown that Zometa had some anticancer properties in particular by inhibiting the VEGF growth factor common to many cancers.
However due to new guidelines Zometa became restricted to treating hypercalcemia & later again to reduce pain in metastatic bone cancer.
In addition new information on real or potential long term side effects of Zometa made her caregivers very reluctant to prescribe Zometa again.
(necrosis of the jaw & unknown long term effect of the disruption in normal balance between osteoclats & osteoblasts activities).
In the next 2 years I was only able to obtain 2+1 Zometa IV's.
I hope that guidelines will become less restrictive when & if she needs it.
Did your onc indicate for what purpose (on label or off label) he was prescribing Zometa?

[Barbara H.]

Hi, again!
As far as I know it is pretty standard to receive Zometa when you have bone mets. I think the benefits outweigh the risks.
Good luck,
Barbara H.