Mom has recurrence - please advice..

[belle]

Hi,

My mom was diagnosed and had a rt. mastectomy in Feb. 2007. She had stage III bc, er+ pr+ HER2+ and was to receive a high-dose chemotherapy followed by Herceptin. However, she tolerated the first chemo (Epuribicin) very badly and the doctors decided to put her on Herceptin alone for 1 yr, radiation and femara.

Now we have recurrence on her left breast, left axillary lymphnodes, supraclavicular nodes and in pleura. We met with her Dr last week and discussed the treatment plan. Biopsy results showed that her tumor is the same as it was in 2007, i.e. hormone positive and her2 positive.

Since there are mets in her lung pleura, they say it is of no use to operate her left breast now and we will start with chemo (Taxol)+Herceptin. They say Herceptin seems to have benefited mom the first time as it kept her healthy with no recurrence longer than they expected. In 2007 mom's primary tumor was 9cm, 53 out of 59 removed lymphnodes were cancerous.

We will start with taxol this Wednesday and after checking mom's heart Herceptin will be added to taxol. Taxol+Herceptin will be taken every 3 weeks and in 3 months scans will be made to see how the treatment worked.

I'm hoping this will be a good start, but yet afraid that it may not help. It's a bit disturbing to think that her left breast and axillary lymphnodes cannot be operated. Mom has been having shortness of breath, dry cough and wheezing for the last 3 weeks. Don't know if the chemo will relieve her symptoms or make them worse.

Would you please share your experience with Taxol? Everyone reacts differently but maybe it would be good to know the major side effects to expect and how to make them easier to deal with. We've been taking Maitake and milk thistle as food supplements and now are considering to continue them during chemo.


Thank you and with best wishes,
belle

[BonnieR]

Belle, sorry to hear this news but good to know you all are on top of it and treatment is starting.
Everyone reacts differently to chemo, of course. But I think you will find reading here that we all came through on the other side of it. There are so many meds that can counteract side effects.
My biggest SE was neuropathy (numbness) of my feet. I also had some days of aches and pains following the infusion. Blood counts drop too. And I lost my appetite so it is important to remember to have easy to eat foods in the house. Cheese, yogurt, protien drinks..the sort of thing which she can snack on frequently. Be sure she is dressed warmly. Treatment rooms are always too cold. Drink water.
I suggest that you tell the oncologist about the supplements she is taking. You would not want them to inadvertently interfere with the chemo drugs.
Keep the faith.

[chrisy]

Hi Belle,

So sorry to hear this news. But do not lose heart, there are treatments that can still work and that your mom will most likely be able to tolerate.

Sounds as if her symptoms are caused by the malignant cells in the pleura, so an effective chemo regimen would reduce those symptoms.

My experience with Taxol was that it was quite tolerable. I had Taxol/Carboplatin/Herceptin weekly - so it's not exactly the same as your mom's plan. As you say, everyone responds differently, but for me (with premeds to prevent nausea) I felt pretty good during the entire 6 months of treatment. Most people also receive a steroid premed to prevent allergic reaction to the Taxol - this made my face flush and also interfered with my sleep and I was able to get the dose reduces. But first things first, see how she does with it.

As I said, I felt well the entire time although towards the end I felt fatigued. It depleted my red/white blood cells but in my case, not enough to delay treatment or need "boosters". I also never had any nausea and in fact many evenings after treatment we'd go out for burritos.

In general the taxanes are more tolerable than the anthracylines (Epirubicin is one of those!), so she may do just fine.

Of course you want to get the ok on the supplements - I always keep my doctors in the loop.

As for the surgery, there actually has been some data in the past year indicating a better prognosis if you DO have the breast surgery, even with Stage IV disease. But you do not need to push or decide this right now - take one step at a time and see how mom does on the chemo.

Hang in there

[Joan M]

Belle,

I had Taxol and tolerated it well. I worked full time during my Taxol and Herceptin treatment, and had some fatigue. My most bothersome side effect was peripheral neuropathy of my fingers, but not my feet.

I'm praying that your mom's treatment will knock out those mets.

Joan

[Emelie B]

Hi Belle,
So sorry to hear about your Mom. You sound like a wonderful daughter and one who will fight for her Mom. As you can see by my signature, I just finished 8 weekly treatments of Taxol-Herceptin with every 4 week Zometa for bone mets.
I worked part-time thru the treatments and was just tired at the end of the day. I had the premeds and was able to eliminate Benedryl after 3 treatments and reduce the dose of the predizone, which helps with flushing and sleep. The loading dose was tough 2 days afterward, but then got better.
Also, please note that scan in April was CLEAR! On every 3 week Herceptin and Zometa now.
Good luck with treatment and stay strong and always hopeful.
Best regards,
Emelie

[Shobha]

Hi Belle,

I was given Taxol+Herceptin weekly and I tolerated it well. Had very little tingling in the feet. Also, I really needed Benedryl during my first infusion since I had very severe itching on the affected breast. But after 3 treatments, I was able to eliminate Benedryl from my regimen. Also, very much like Emelie B, I reduced the steroids slowly since they gave me some bone pain.

I was told that taking Co-Q10 supplement helps with the MUGA score of the heart. But, please check with your doctor, if this is ok to take during treatment.

hugs,
shobha

[ElaineM]

So sorry to hear about your Mom. I hope she does well on the new chemo combination. If not there are other choices. A chemo called Navelbine is usually tolerable and can be taken with Herceptin.
Maybe your Mom can have more surgery after some of the cancer has been reduced by the chemo. Maitake and other Asian mushrooms are good for the immune system. Milk Thistle helps to keep the liver working well.
One of the other people who responded suggested Co Enzyme Q 10. It might help your Mom's heart during Herceptin.
Please ask your Mom to take good care of herself. Feel free to drop by this site anytime. I have my fingers crossed for your Mom.

[belle]

Thank you all so much for your warm support and taking your time to share you knowledge! I loved every bit of your advices and will try to stick to them throughout this treatment. We have our first taxol infusion tomorrow morning.

I noticed many of you received Taxol+Herceptin weekly. May I ask you how much the doses were, if you have this info? We are being treated in Germany. As I wrote earlier, the Drs want to give us Taxol+Herceptin every 3 weeks, although mom and I think that weekly regimen might attack the fast growing cancer more effectively. But we are not sure which doses should be used in this case. Back in 2007, mom received 8mg per kg at her first infusion and 6 mg/kg at each subsequent Herceptin infusion.


We agreed with mom's onc that Navelbine will be the one of the next options after the first treatments stop working.

As Chris and Elaine suggested, I am also hoping that maybe after reducing the tumor mom can still have surgery to remove her breast.

Will keep you posted on the progress. Thank you once again so much for your support, kind wishes and prayers.

Hugs and love to all,
belle

[belle]

Mom received her first chemo and is tolerating so far well. She sais symptoms have subsided as well a little, no more frequent cough and pain in her breast. With little steps we are moving on.

We asked about the weekly vs once per 3 weeks taxol+herceptin. The Drs said the effect is the same, weekly is only to make chemo more tolerable.

It's a blessing to have found this site.

Hugs to all,
belle