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Skin Mets treatments

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

Looking for someone dealing with breast cancer mets to the skin.  I really, really would like to talk to someone going through this horrible disease.  I am on AVastin and Abraxine and it is spreading by the day. They took me off so that they can do a staging PET/CT as I have been having hip pain. I am in pain both physically and mentally.  I am so scared that it is not only going to cover my whole body but compromise my port as well.  Please if anyone knows someone or especially if they know what kind of treqtments there are i would be so grateful.

Thanks,

Cathy K

Rague
Posts: 3388
Joined: Aug 2009

I looked at your profile to see what type of BC and type of skin cancer/mets but did not see any info.  You might get more replies from those dealing with similar issues if "we" knew who might be dealing with the same issues.

Winyan - The Power Within

Susan

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Cathy, I wish I could help, but I don't know anyone.  Just wanted to send extra hugs and I am praying things improve soon.

survivorbc09
Posts: 4378
Joined: Jun 2009

I am sorry Cathy.  There are 2 on this site now in this group.  They are lizzie17 and Patti1967.  Both of them have posts on this breast cancer board.  I can bump them up for you.

Good luck, Jan

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Cathy, good luck with your tests.  I'm sending hugs and prayers.

Debby

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

Here is more info on the type of cancer I am dealing with. I was first diagnosed in 2008 with Stage 2b, Triple negative DCIS in my rt breast.  I had the big three, mastectomy, chemo, radiation.  In Jan 2010 had prophylactic mastectomy on left breast and reconstruction to both breasts (big mistake). In April 2012 I started having pain in my right arm which I thought was the start of lymphadema, no I was told. Pain getting worse so I saw DR.(plastic surg. who onco sent me too) 4x and still he said no lympho so back to onco who sent me to Mayo to have my neck looked at for arm pain?  I travelled to Mayo (6-7 hour drive) and saw a neuriologist.  He didn't think it was neck but decided to do MRI anyway.  Next day he sits down looks at my husband and says "you need to go back to your oncologist) My husband and I said in unison,"Why?".  He just looked at us and repeated the exact same thing.  As a matter of fact he said it  4x.  No explanation.  We came back to our clinic I was admitted because by now I was in excruciating pain in my rt shoulder. arm and hand.  They did a biopsy and it came back positive for cancer on the lymph nodes in my brachialplexis that was the reason for the rt side pain.  Only now for some reason I am no longer TN I am HER2 positive.  So they give me Herceptin and it metastisizes to my skin, then radiation for that, then Xeloda and nothing.  So now I have been on Avastin and Abraxine.  At first it showed some really promising regression.  Then I had to have surgery 2x for my pain pump so I had to stop chemo.  Now I have started back on and it seems to progressing instead of regressing. I don't know what to do.  Everyone is telling me to get a second opinion but right now we don't have the time or funds to be traipsing all over looking for someone that has seen this and treated it.  My doctor now keeps telling me that if we keep it cutaneous, on the outside, then we are okay.  Okay for what?  I have done some research on some medications that can halt or even cure the skin mets but they of course are not here in the US.  One particular product that has been mentioned on this site is Miltex, made by Asta Medica in Germany.  My onco found a company that makes it here (Baxter Labs) but they won't distribute it because it is not FDA approved for  my illness.  He is looking into the Germany thing but I am pretty sure my insurance won't pay for something not FDA approved.

So that is the storyand I am hoping that someone might be able to help although I wouldn't wish this on anyone.  So I sit here waiting for my PET/CT hoping that it hasn't spread to my bones. Pray, pray, pray.  Give it up to God and live day by day.

Thank you all for the prayers and thoughts it is truly appreciated

 

Keeping up the fight,

Cathy K

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