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-   -   Decisions, decisions (http://her2support.org/vbulletin/showthread.php?t=66536)

Joan M 10-08-2017 08:31 AM

Decisions, decisions
I'm trying to decide whether to take a break from Herceptin or put in another port.

My port was removed in 2006 after my treatment for stage 2 breast cancer (ER-/PR-/HER2+), and then six months later the cancer returned to my lung with the same pathology. Ditto for my brain met in 2008.

I've now been NED for 9 years, but my "good" arm seems like it can't take another infusion.

The problem most likely has to do with using one arm for 10 years but also because of an excision made in the upper part of that arm to remove a melanoma in February 2016. The surgery also included a sentinel lymph node biopsy. The two nodes did not have any melanoma cells.

Although the mole on my arm was tiny (and I have many such moles all over), I can say only that I want to know which shark bit me, since I have a huge indentation in my arm. After that surgery I've noticed slight swelling in my fingers and also around the incision.

I think that it's now time for another port, although I don't know whether it can be placed on the same side. Or perhaps to take a break from Herceptin.

In January, my breast oncologist did a Guardant Health 360 gene sequencing test to look for mutations (I believe the test looks at 70 genes). The test found that I have mutations in four p53 subvariants. No other mutations, including no HER2. When normal, p53 acts mostly as a tumor suppressor gene, and I believe it is the most common cancer mutation, mutated in 40% of cancers.

MaineRottweilers 10-10-2017 09:37 AM

Re: Decisions, decisions
Hi, Joan.

Ten years using the same arm, ten years! You give me hope.

I got my second port placed, more or less in the exact same spot as my first port. My surgeon was a little squeamish about doing so, cited infection and scarring risks etc. I put on some pressure and he did as requested. He used the same incision area so no additional scar was added to my check but I did end up with a teeny tiny new scar on my neck (I have an IJ port). I have not regretted re-porting. Now, about those ten years....tell me your secret. <3

Joan M 10-10-2017 01:18 PM

Re: Decisions, decisions
Thanks, Tracy. I know of another women being treated at Fred Hutch in Seattle, where they tried to put a port back in at the same location but it didn't work. She had to have it inserted on the other side. But it's good to know that it could work. And thanks for the tip about a potentially "squeamish" surgeon, which is what I could expect.

My onc said that the port is usually placed on side opposite the surgery side, which is where my port was. I have another appointment with him in two weeks to discuss further.

I wish that I had a secret! I used local procedures along with systemic therapy from the get-go, and perhaps that's part of it, as well as maybe my own immune system. I thing we wish we all knew what makes each of us tick with MBC.

Joan <3

Jean 10-14-2017 06:51 AM

Re: Decisions, decisions
Joan and Tracey,
I don't know anything about ports - had my treatment via my arm (like Joan)
only Joan apparently has a golden arm, LOL.

I just wanted to wish both of you well with your new ports.

Joan M 10-14-2017 12:40 PM

Re: Decisions, decisions
Hi Jean,

And now I practically have a bum arm. "Happiness" doesn't last forever.

Great to hear that you're doing well!


Becky 10-14-2017 02:22 PM

Re: Decisions, decisions
Dear Joan

Howdy there. Do you come my way anymore? I would love to catch up with you.

Laurel 10-14-2017 06:14 PM

Re: Decisions, decisions
Hey there, Joan! Nice to hear from you. I am wondering about the wisdom of taking a break from Herceptin when you have been so stable. I think of Flori (SoCalGal) who took a break a few years back after years of stability with negative results. PM her if you do not recall the details or read her posts from perhaps 4 years ago (if memory serves, which frankly it rarely does!).

I honestly do not know about the port issue except that to do infusions without it is so hard on the veins. Why not consider a metiport this time?

I wish you luck with whatever decision you make. Please let us know what you determine!

sassy 10-14-2017 07:00 PM

Re: Decisions, decisions
Good to hear from all you girls! No advice Joan, but best wishes.

Laurel 10-14-2017 07:13 PM

Re: Decisions, decisions
Hey there, Rhonda!

Don't want to hijack Joan's thread, but glad to see your post! How are your legs these days? Haven't heard from you in ages!

Pamelamary 10-14-2017 11:56 PM

Re: Decisions, decisions
Joan, I am only 5 1/2 years down the MBC track, but haven't considered dropping the Herceptin. After 4 years of mucking around with wonky veins, my first port is doing wonderfully. Still hate it though!
Best wishes..... Pam

Joan M 10-15-2017 09:20 AM

Re: Decisions, decisions
Hi Becky,

That I do. In fact, I left my place of birth about 4 years ago and moved just across the river and down the road a piece. But I'm still being treated in NYC and go back and forth all the time, taking advantage of the arrangement to visit with family and friends on that day.

Hello, to Sassy and Laurel. Good to hear from you, too. And, Laurel, thanks for your input about the mediport and Flori. I spoke with Flori many years ago. I would agree somewhat with why mess with something that's working. I think that sometimes someone like Steph and AndiBB can go off of Herceptin (and I know a few others) and do well, which makes it tempting. ...But I also know of a few women where the cancer came back.

The port decision is a tough one, and like you Pamelamary, I hated my original port!


Joan M 10-27-2017 01:03 PM

Re: Decisions, decisions
Hello, again, ladies,

Just an update on my treatment. I've decided to take a 3-month break and try to sort out whether I'm having heart issues.

I often feel out of breath at the least provocation, such as climbing 10 or more steps or walking up hill, for instance. But perhaps I'm just out of shape.

If all seems well with my heart, I'll then decide on discontinuing.

One step at at time . . .


StephN 10-28-2017 02:15 AM

Re: Decisions, decisions
Hi there.
Nice to see you have taken a step in your decision process. That is how I started on my path off my beloved vitamin H - had a port problem and decided to take a little "Herceptin holiday."

I think I mentioned that I did feel better and have a bit more energy once I was off it for a period of time. And I have not seen any studies on heart issues with long-term users of Herceptin. There actually may not be any such study yet.

Let us know how you are feeling.

Joan M 10-28-2017 09:40 AM

Re: Decisions, decisions
Thanks, Steph, for your reply. It will be interesting to see how well I feel now that I've stopped H.

One of my concerns is about a mutation that was discovered with my Guardant Health 360 liquid biopsy for breast cancer. I mentioned the test above. It was free through Medicare.

My assay showed four sub-variations of TP53 (same as p53), which I compared to the recently released data from the MBC Project.

That project showed the occurrence of TP53 sub-variants. The variant R273C was shown, but not the variant I have, which is R273H. None of my other three TP53 sub-variations were shown in the MBC Project data.

TP53 was at the top of the list of mutations in the MBC Project data, followed by PIK3CA, as having the most mutations. TP53 is a tumor suppressor gene under normal circumstances, and when mutated it can lose that function.

However, in looking into it further online, I found that both of the sub-variations noted are actually gain-of-function mutations, meaning that they actively PROMOTE cancer development, not just lose the ability to suppress the development of tumors.

I had no other mutations or alterations, such as HER2, PI3KCA, mTOR, etc., which are normally associated with breast cancer.


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