Need your input about treatment

Joan M · 12-23-2010, 04:11 PM

I've been NED for a little over two years, and I'd like your input about whether I should consider another treatment beyond my Herceptin every three weeks.

Although I'm grateful, the longer I go NED the more nervous I get, because I chose local treatments for my lung met and brain met and no chemotherapy, and since I'm metastatic the cancer cells are still around. At the time, treatment after the surgeries was offered, but I declined because I was too busy trying to get back to the office.

I have been wondering about a bone drug such as Zometa or the newer drug, Denusumab, even though there's no evidence that they prevent significantly the spread of cancer to the bone before it appears in the bone. I wonder whether I should add Tykerb or perhaps do a course of Xeloda.

I mentioned this lately to my oncologist and she refuses to give me anything beyond chemo unless another met shows up.

My feelings are mixed about adding another treatment, but those damn cancer cells are still in there and that scares me. I also asked her about a CTC test, but she said they don't do that test.

I get regular CT scans of the chest, abdomen and pelvis, as well as a brain MRI, every three to four months (the last were in mid and late October), and I'm scheduled for PET/CT and bone scans in January. I have not had a PET/CT since June 2009, just before my thoracic surgery for the fungal infection in my lung.

What are your thoughts?

Joan

Joan M · 12-24-2010, 05:44 AM

Just wanted to add that since I've been NED in the lung since Aril 2008 and in the brain since October 2008, my oncologist thinks it would be a waste to add a treatment, and that I should save other drugs for when I really need them.

Mary L · 12-24-2010, 06:39 AM

Hi Joan, I am concerned also. I see my onc Jan 3rd and will be having ct scans on chest, abd and pelvis. I don't usually get a brain ct. I am ned for 3 years in Oct 2010. I feel very nervous this time. I am metastatic stage IIIB. When my cancer returned 9 months after my original treatment it was very agressive skin mets to the site where my breast was removed. It came back 3 other times when I had to stop Herceptin because my muga tests showed that my ejection fraction was down. I am going to ask him that even if my scans are clean would it be beneficial to go back on Herceptin for awhile. I am so fortunate to have survived 7 years with IBC stage IIIB. I never feel "safe". We can compare notes after our tests are done. Best wishes and Happy Holiday!!!!! Mary L

GracePang · 12-24-2010, 06:53 PM

Hi Joan and Mary,

I understand your concerns and I would ask for at least Herceptin+Tykerb to keep the cancer away, if your doctors are open to that idea. I would think the same way to be proactive in terms of preventing the cancer comes back.

However, my oncologist thinks completely different. He would rather deal with the cancer when it shows up. He keeps saying that to save drugs and use them only when it is necessary.

What is the training in this field? Does anybody know if my onc's philosogy is legitimate?

Grace

Barbara H. · 12-24-2010, 08:17 PM

HI Joan,
At the moment Herceptin appears to be working. I do not believe there is any need to add anything until you need to. There is also a very slight chance that you will not need to progress to another drug. If you are having scans and tumor markers taken, I would try and relax and hope that Herceptin works for a long time.

I have now been on Tykerb and Herceptin for over a year and wonder how long it is going to continue to work. It is difficult to live with this uncertainty.

Best ,
Barbara H.

Sherryg683 · 12-24-2010, 10:37 PM

I can relate to what you are saying because I too was a nervous nelly about doing more than Herceptin after ending my initial chemo. I was very concerned with brain mets. I talked my Oncologist to letting me try Tykerb...I stayed on it about 2 weeks and had such severe diahreah and acne, that I got off it. My Oncologist was and is of the opinion to save the drugs for later use. Looking back now, I believe it's the right decision also. You've gone 2 years with nothing showing up. I know you are nervous with just doing Herceptin alone but I would have to think that the Herceptin is working. If it weren't you would think something would have popped up by now. Why rush out at this stage and get on something that is going to make you feel bad and is not necessary at this point. You are getting scanned regularly and if something does show up, you will catch it and then you can go on to additional chemo. Being that you haven't had any (besides herceptin) you have a lot that they could try. I know how scared you are and I was at 2 years. But as someone looking back, I would say to you to enjoy every day that you are NED and try not to live being afraid, because that's not really living. Easier said than done, I know. I get my scans in January also, so I'll pray for continued NED for us both...sherryg

Jackie07 · 12-24-2010, 10:38 PM

I think your onco's advice makes sense. Most chemo treatment carries risks and causes side effects. I was not able to continue Herceptin for the whole year because of a heart condition. Herceptin is the key agent against Her2 breast cancer, your doctor will add other chemo ingredient when necessary.

SoCalGal · 12-25-2010, 01:01 AM

Hi Joan,
Your own immune system appears to be doing a fine job of keeping you NED. I think that trying to add chemo when you have no signs of disease might be better saved IF you need it. The targeted therapy is working well - I recently heard Susan Love at a lecture, and she really emphasized "changing the environment" as a key to keeping cancer away. In other words, exercise, healthy eating, stress reduction - these things all "change our internal environments" and allow our bodies to be as healthy as possible. xo Flori

Joan M · 12-26-2010, 10:42 AM

Yes, even though some of us are holding steady, we still tend to worry anyway. Well, at least I'll be getting the PET/CT and bone scans in early January.

Like most of us, I tend to worry about aches and pains. About two months ago my lower back started to hurt me, but I've had bad back pain before. Then just before the breast cancer conference in San Antonio in early December, I started having severe left hip pain to the point of being almost unable to walk or sleep, and I was limping around in San Antonio. I'm still having pain there but it's 80% improved (and I never rest it). My oncologist thinks it's perhaps bursitis, but she's going to check with a bone scan. Also, I had taken a red-eye from Phoenix to Philadelphia about a week before the symposium and was trying to sleep in all kinds of weird positions using the empty seat in the middle. And the hip pain started less than two days afterward. I guess I'm not as young as I used to be ...

I'll let you know the scan results. And good luck everybody whose having scans in January! It's like we're all waiting until after the holidays in December and the new year to get scanned!

Joan

Ellie F · 12-27-2010, 11:29 AM

Hi Joan
Sorry it's taken me a long time to respond. I agree with the view about your immune system doing it's job and keeping the cells in check.My onc believes that secondary bc cells are never dormant but can grow and be destroyed by the immune system before they get to do any harm especially when helped by vit h.
I guess a dilema is about whether this would be a good time to have a vaccine? What seems to hold true is triggering an immune response when you are NED or have only small amounts of bc is thought to give the immune system the best chance to overcome the disease.I know my onc who isn't particularly pro vaccines believes this is the point when they would be most efficient.

Ellie

Rich66 · 12-27-2010, 04:39 PM

You might be able to get a CTC test from a second opinion onc.
Some off-label approaches like Metformin, aspirin, melatonin and Boswellia might be worth considering.

Mary Jo · 12-27-2010, 08:22 PM

Hi Joan,

After reading your post I realize I can't offer you any "thoughts" on treatment options for you BUT I do have one thought I'd like to share.........

I am SO VERY THANKFUL that you are 2 years NED!

Hugs and lots of love,

Mary Jo

Joan M · 12-30-2010, 08:54 AM

Ellie, I've actually considered a vaccine trial and recently sent an e-mail to U Washington about their trials, but I haven't heard back yet. I might be eligible for one of them. I'm going to create a post asking some of the HER2 ladies about vaccine trials.

Rich, I'm a great believer in aspirin and never take ibuprofen unless there's a reason, like surgery, or something like that. I take calcium, fish oil and 2400 units of vitamin D daily. Several months ago I tested below level for D and my current onc put me on 50,000 iu once per week for 8 weeks and the level came back up. I'm going to ask to be tested again to ensure that the level is still okay.

Mary Jo, You are so right! I always tend to worry and think the grass is greener on the other side. Hallelujah for 2 years NED!!

Thanks.

Joan

schoolteacher · 01-04-2011, 06:45 AM

Joan,

I am glad to hear from you. Congratulations on two years NED.

Amelia