scan and doctor update
 

I saw the oncologist Thursday. Good news - echo is normal - it always is. Brain MRI looked better than in May - still multiple spots though. Not good: MRI lumbar sacra spine - lots of mets - may be contributing to leg pain.

I have radiation starting Monday on my lumbar and sacral spine. That touches on the lower abdomen and can cause nausea and other gastro problems - diarrhea , constipation. I still have 1 week to go with the femur so the 1st week will be on both areas. Wish they had decided this in the beginning so I could have been done with it all in a week.

PET/CT shows mild progression in all areas - "diffuse met disease in all bony area." CA2729 is up to 5500 from 4700 3 weeks ago.

I'm off halven and will start abaxane, herceptin, zomets on Sept.1

I asked about tdm1 and he said I'd have a rough time getting in with my current brain MRI. I might still call and ask.

I broke down and started to drink boost & ensure. Do not like the taste but am tolerating it. At least I get a few more calories that way.

He's usually a jovial guy; he was very somber. As he was looking at the list of drugs he said - "you are running out of options." Hard to here.

Meanwhile the pain in my left thigh is no better. That radiation isn't doing a thing yet. I was getting by on ibuprofin but now sometimes take oxycodone but only when I know I can sleep.

That's my update still trying to process it all - it keeps getting worse. Love you all pam

Re: scan and doctor update
 

Pam, I haven't been on this site for awhile and I was so sad to hear that you are still having so much pain & progression. I so hoped that they would be able to get this under control. I will be praying for you and I send my best wishes. Mary L

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Great news on your heart. It is good to have a nice strong heart. Not so good news on the other things.
Good luck with the additional radiation. Maybe the Herceptin and Abraxane will kick some of the cancer to the curb. I hope so.
I was reading an article about combining Herceptin, Tykerb and Taxol (Abraxane is actually Taxol with a different easier to tolerate binder.)It is supposed to be a great combo too. You haven't had Herceptin in awhile. Maybe adding it now will surprise the cancer to the point it will give up. I hope so.
If you have a blender and you or someone else has the energy to add some fruit, fruit juice, yoghurt, almond milk or regular milk to the Ensure and blend it all together it might taste better. You could throw in some protein powder or some Carnation instant breakfast drink for variety too. It would give you some extra nutrition and protein. I don't know if they still make it, but Boost used to have some good berry or tropical fruit flavored juice. When I don't feel like making a full breakfast I mix a package of instant oatmeal, with hot water and some dried fruit for a pretty healthy start to the day. I eat that with some yoghurt. In fact a cup of yoghurt makes a great snack too.
We are all keeping our fingers crossed for you Pam. Hang in there. New drugs and new drug combinations will be on the market soon.
Take good care of yourself. Good luck with everything.

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Pam, I am also sorry to hear of progression. Hoping the new drug combo will surprise the mets and destroy them. I'm sure it was tough to hear, but remember, when you're going through hell, just keep going.

all the best
caya

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HI Pam,
I am sorry to hear this latest news. Once you finish the radiation and begin the new chemo, perhaps you can look into the treatment plan that Courtney is using to try and tackle the brain mets. After you get them under control you would have a better chance of getting into a T-DM1 Trial. This drug really took care of my bone mets. I have a feeling that it could work wonders for you.
My thoughts continue to be with you.
Barbara H.

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Hi Pam... here's the sentence about brain mets exclusion for TDM1 EAP: Brain metastases that are untreated or progressive or currently require any type of therapy, including radiation, surgery, and/or steroids to control symptoms from brain metastases within 30 days before the first study treatment.

If you think you are interested in getting the ball rolling just as a back up, it might be wise to talk to the clinic in Iowa and see how they interpret it in your case. (before Sept 6)

Glad you got good news! Hope you start to feel better and less pain very soon!

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Hi Pam

Sorry to hear your news. Hopefully the new chemo/radiation will get things under control. I have swelling around my treated brain met so I have weakness in my right arm & leg which is making life difficult so back on steriods. I have an MRI to the brain booked for next week also CT of the body had a break from Chemo this week just herceptin & Zometa. Like you I am fed up but you just have to keep going and hopefully things will work out. Thinking of you all the time. With my love Dianexx

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Pam and Diane, My heart and prayers go out to you both!

Keep the faith!

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Pam
All the best with the next options. Hoping TDM-1 is one of them-I'm a bit hopeful based on what Brenda posted. I got nearly a progression free year out of Abraxane so am hopeful it will be good for you.
Diane
So sorry to hear about the arm and leg weakness and I hope the MRI goes OK.
Thinking of you both with love
Trish

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Pam,
I hope the new treatment works and stops the progression. Just want you to know my thoughts and prayers are with you.
Love & Hugs,
Kris....

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Hi Pam.....Nothing else to offer than everyone else hasn't but I did want to offer you my cyber hug. It's from me to you, with love.

Mary Jo

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Pam you are in my thoughts and prayers, I wish you continued strength and hope soon
that treatment will succeed in these setbacks.

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Pam, the hews is good.

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Pam
Sending positive thoughts that the new regime will be the one.....kind of like the old story, you have to kiss a lot of frogs before you meet your prince.

I am impressed that you are doing the boost and ensure....considering how it tastes. Please know you are in my thoughts and prayers for good news!

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Pam,

Hope to hear from you soon.

Amelia

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Sending hugs and hope you're resting easy.
Good news about the heart and brain and I pray and cross fingers, toes, heart & mind that the TDM1 route is open for you.
Will be waiting to hear an update when you have a chance.
Hugs to you~

Keep the Faith

Jml

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Pam,
I'll keep you and your medical team in my prayers. Has your doctor said anything about pertuzumab? Its like herceptin and tykerb in that it targets the Her2 protein. Keep the faith.
(Hugs)
Kristin

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Pam there is a recently approved drug for bone mets from breast cancer which works at least as well as Zometa, and probably better. It is called denosumab. If you put it in the search function above and put Lani in too, I think I have posted about it. It works differently than bisphosphonates--perhaps worth inquiring about ...
Hope this helps

Re: scan and doctor update
 

I agree with Lani, denosumab (aka Xgeva) is as good as bisphosphonates minus some of the side effects. It is given as a shot every month- I have had good luck with it.

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Pam,
My heart aches knowing what you are going through physically as well as emotionally. Know you are in my prayers and all you can do is keep going on! Gentle hugs!

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Pam - sorry to hear your news but happy about the heart news! You just keep fighting one step at a time like you have been! I know it's rough but it's what needs to be done and you can do it. My Pam is having a rough time w/side effects from decadron and she's fighting for all she's worth so you keep plugging too ok? I'm pulling for you always. My best to you
joyce

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Pam,

So sorry for your difficulties of late. I wish there were something to say to make it better for you. Know that you are being held in prayer.

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Hi Pam,
Thanks for the update. You are doing a good job of getting through each treatment. I am glad that others have been able to suggest additional drugs to inquire about. I will hope and pray that you get some relief from the pain. All of us are behind you. Sending my love and good wishes direct to you via this post.

Thinking of you,

Re: scan and doctor update
 

Seems like Denosumab is definitely worth a try in your situation. As is weekly Zometa like my mom is getting..no neck pain after a bit on that regimen.

Just a thought on the hormonal side. You have had estrogen receptor blockers and aromatase inhibitors separately. There is a possibility that combining the two might help...i.e. Faslodex or Tamoxifen + Femara or Aromasin. Adding metformin..yeah..I know onc gave resistance..but onc should be more flexible if using phrases like running out of drugs etc.

Any chance to get a new biopsy/sample for chemosensitivity testing?

Is it thought that your reactions were due to her2 meds? Otherwise, seems like all indications suggest continuation of at least Herceptin beyond progression.

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Pam all the best with your new treatment combo.be cheerfull.

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Sorry I haven't checked in, but there's not much to report. I've been following up and considering all the good suggestions you've provided. The rads on femur are done. Much - not all pain is gone. Rads continue on spine. That causes some nausea & diarrhea. Still fatigue. Three weeks left I think. Then hope I feel more like adding back exercise - I feel I've gotten weaker again. Scheduled to begin abraxane on Thursday. Still haven't gotten far on tdm1.

One exciting news. My 35 yr old son, Nathan, became engaged on Sunday.

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Hi Pam,
I am still thinking of you and keeping my fingers crossed for you.
Congratulations to your son and his fiance. That is great news. You have to be in good shape for the wedding and perhaps play with a future grandchild or two, so hang in there and keep putting one foot in front of the other.
The others have given you some excellent suggestions for medicines etc. I have found that if I keep on top of things and keep my needs on the minds of my docs things go alot better for me. The docs even consider some of my suggestions. You seem to be doing a good job of that too. Take good care of yourself.

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Pam,

Congratulations on your son's engagement.

And thanks for the update. You sound good. Let's hear from you more often.

Sending you good vibes.

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Mother of the groom. Will you wear a blue dress?

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MJO - I always heard that as mother of groom one should wear beige & keep one's mouth shut!!

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Sorry to hear your news . I think of you all the time. I am now suffering radiation Brain necrosis which is affecting my right side very difficult when you are right handed and walking is hard. Such bad luck for me as the tumour on the brain has not so I am having a break from chemo which is welcome. So sorry you are suffering pain nothing worse hopefully the radiation will sort that for you. Keep in touch.

Lots of love


Diane
XXX

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My late Mother-in-law wore a light pink dress to match the maroon ones worn by my bridesmaids. They had to wear red because my parents are very old[-fashioned] Chinese and red is the traditional color for happy occasions such as weddings and New Years celebration. I had to make sure that my parents (especially Mother) were not 'disturbed' by non-traditional stuff.

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Go to your son's wedding and enjoy yourself Pam. I think you son will be very happy to see you at his wedding. He is not going to worry about what you are wearing. Wear whatever makes you happy and festive for the occassion.

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Pam, how wonderful to hear of your son's engagment!! Please know you are always in my prayers!

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RE: Wear beige and keep one's mouth shut

ROFL Ain't that the truth. Keep one's mouth shut now and forever when it comes to being a mother in law! I think you should wear red for good luck, as Jackie said. That should cause a buzz.

Hang in there. May you live to be driven crazy by your adult grandchildren.

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One of my sons got married almost six years ago. I wore purple and smiled a lot. I'm not the current wife of the father of the groom. They "forgot" to put a place for me at the groom's family table but there was room for his father's younger brother. I just took it as an opportunity to go around and visit everyone else at the reception.

Pam, you are in my prayers.