Update on Barb

MikeF · 10-09-2012, 01:07 PM

There sure seems to be an overabundance of bad news on here recently. I hate to add to it but Barbs doctor was a little discouraged today when we went in for her third TDM-1 treatment. As you may know Barbs has been struggling with what they diagnosed as Pneumonia since the 20th of Sept. After several rounds of antibiotics it appears to have settled down somewhat, at least there is no fever. As I said we went in for treatment today and her blood work looks fine so they sent her back to see the doctor. I could just tell he was discouraged at what he sees he was really hoping for retreat of the skin mets. He had outlined with a sharpie where it was and it hasnt crossed the line but it hasnt moved away either. When he listened to her lungs he felt there was still fluid and suspects there is cancer in her left lung. He said he doesnt want to give up on the TDM-1 after only two treatments and sent her back for her third. His plan at this point is scans on the 26th and if there is no further progress discontinue the TDM-1 and go with Haloven without Herceptin because my insurance wont pay for both. The discouraging thing for us is not only what appears to be ineffective TDM-1 but also his comment was theres not a whole lot of options from here. Dont get me wrong Im not trashing him I have always felt he really cares for Barb and wants to see her better. Hopefully this third round of TDM-1 will do the trick. There is a verse in Mark 9:24 that is quickly becoming a favorite of mine I have altered slightly to better fit my heart. And straightway the husband of the wife cried out, and said with tears, Lord, I believe; help thou mine unbelief

yanyan · 10-09-2012, 01:23 PM

Hi Mike ! I hope TDM-1 will do the trick !!! Is skin mets the only thing that Barb is dealing with right now? When did she have skin mets initially? Was surgery to remove the skin mets and radiation to affected skin an option? I also have skin mets and have been on tykerb and xeloda for 6 months. Mine are localized and stable and my oncologist recommended surgery to remove it. I am holding back on surgery as i want an oncology surgeon once my insurance changes to PPO next January. He said skin mets may not be life threatening but it affects the quality of my life. and that skin mets are hard to treat when it comes back. So i guess the positive side is that it is not life threatening. Some ladies here posted about using a tropical cream for melanoma to treat skin mets from breast cancer. I forgot what the name is. You can check with Barb's doctor this might work or at least improve the syptoms?

Jeanette · 10-09-2012, 01:44 PM

The last few days have been discouraging. My self I had an Ultrasound and a Catscan on Monday. seems i have a fluid build up and my belly looks like a basketball. It the cancer in liver that is giving me heck. So now its a waiting game to see what the results are and what my options are, Be well my friends, Jeanette

MikeF · 10-09-2012, 02:01 PM

Barb has had from day one a large mass in her left breast. Her doctor felt that mast. would not help because it had already spread to her spine. In fact he felt he could monitor things better if we left it. She initially had radiation on the spot on her spine but has never had it anywhere else. The skin mets didnt appear till after she started the Taxol back in April of 2010 then reappeared this January.

Joanne S · 10-09-2012, 02:43 PM

I hope and pray the 3rd TDM-1 treatment works to provide improvement! Sending hugs and healing thoughts Barb's way, and to you too Mike. Keep us posted.

yanyan · 10-09-2012, 03:28 PM

Hi Mike! It is a good thing that the skin mets didn't grow bigger or expand- It means the drug is working otherwise it would have continued to spread ! TDM-1 may not be as efficient to treat skin mets as to treat organ mets but i definitely hope it would get Barb's skin mets in control. Although surgery is not commonly practiced for stage Vs, but as you have seen from our profiles here that primary tumor does not always respond the same way as mets to other parts of the body. It would be worth to get a second opinion.

KDR · 10-09-2012, 04:38 PM

Hi, Mike
I felt your anguish right through your post. I have a feeling things ARE going to get better.
T-DM1 seems to "work" a little different, a little slower than standard chemos. While I enjoyed huge drops in my CEA numbers on Taxol et al (signature), they decreased much more slowly on T-DM1. I was certain it wasn't working at first. Give it some time.
Looking at Barb's signature, it would appear to me there are plenty of options left should this not be the ticket.
With care,
Karen

MikeF · 10-11-2012, 06:47 AM

Does anyone out there have any experience I can share with Barb regarding very nasty skin mets. Ive looked into the Washington State University Trial and were waiting to see where that gets us. The only down side is its clear across the country. PAULA I so appreciate your thread on fun free stuff theres a new entry that may help us fly there if it comes to that. They sound like Barbs mets may be to severe for the trial they are asking for pictures. Also is there any experience with fluid in and around the lung were looking into draining it she has a hard time getting comfortable when she sleeps.

Jeanette · 10-11-2012, 07:16 AM

Mike , I don't know anything about skin mets, but I have mets to the liver and I look 9 months pregnant. Had a Cat Scan and am still stable, but fluid in the lung and belly. I am waiting for my Onc to call as he is setting it up so I can have it drained. he also said it can be done more than once. I also have a wedge pillow to sleep on as it helps ease the breathing. Jeanette

MikeF · 10-11-2012, 01:58 PM

Just got the call from Barbs doctor they did an X-ray yesterday and compared to the emergency room X-ray of the 20th and the fluid is much worse. So much so that they scheduled a Thoracentesis to remove the fluid tomorrow morning at 10:00 AM. Hopefully this goes well and makes her more comfortable.

Mary Jo · 10-11-2012, 02:10 PM

Mike...I just wanted to say how sorry I am you and Barb are walking the tough road. I ask God to reach down and surround you both with His love and Peace.

Mary Jo

Jackie07 · 10-11-2012, 02:16 PM

Mike,

Mary L has had skin mets. She'd been NED for three years when she last posted in 2010. Below is her posting in the 'Calling all stage IV sisters' thread:

Hi, My name is Mary L and I reached my 8 year cancerversarry Oct 17. I am a survivor of IBC stage IIIb. I was originally given a 28% chance of surviving 2 years and I am still here because of Herceptin and a wonderful onc. I was on Herceptin for over 4 years. I truly believe that you have to really want to survive and think positively during and after your treatment. I am so happy to be alive and watch my grandchildren grow up.

Just recently I was diag. with osteoporis and I will start taking Fosomax on Monday. I was diag. with some compression fractures and have been having back pain but this is just a bump in the road and I will be fine I wish all of you the very best. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.

Mandamoo · 10-11-2012, 03:20 PM

Mike - I'm sorry that Barb is having such a rough time. I hope the thoracentesis helps make Barb more comfortable. I imagine they will biopsy the fluid and then you will know if it is cancerous or not - it may not be.
The skin meta not spreading more is a good thing.
My tdm1 trial onc said yesterday that so far his best responders are the slow steady ones when it comes tithe drug. He has had a number start stable and then slowly have regression some for over 12 months.
I hope that the fluid etc... Is non cancer related and that TDM1 starts to weave a little more magic for Barb.
Sending love for the procedure and positive results.

Lani · 10-11-2012, 03:35 PM

Don't know how this has developed since but this is an old post of mine:
01-23-2008, 09:27 AM #1
Lani
Senior Member

Join Date: Mar 2006
Posts: 4,070
for Lolly and others who have had skin mets--photodynamic therapy with new platinum
compound

Light powered platinum more targeted & 80 times more powerful than similar cancer treatments [University of Warwick]
Researchers from the Universities of Warwick, Edinburgh, Dundee and the Czech Republic's Institute of Biophysics have discovered a new light-activated platinum-based compound that is up to 80 times more powerful than other platinum-based anti-cancer drugs and which can use "light activation" to kill cancer cells in much more targeted way than similar treatments.
The platinum-based compound known as "trans, trans, trans- [Pt(N3)2(OH)2(NH3)(py)]", or a light activated PtIV complex, is highly stable and non-toxic if left in the dark but if light falls upon it becomes much less stable and highly toxic to cancer cells. In fact it is between 13 and 80 times more toxic (depending on how and on which cells it is used) to cancer cells than the current platinum based anti-cancer drug Cisplatin. Moreover it kills the cells by a different mechanism of action, so it can also kill cisplatin-resistant cells.
Professor Peter Sadler, Chairman of the Chemistry Department of the University of Warwick, who led the research project said:
"Light activation provides its massive toxic power and also allows treatment to be targeted much more accurately against cancer cells."
The compound could be used in particular to treat surface cancers. Patients could be treated in a darkened environment with light directed specifically at cancer cells containing the compound activating the compound's toxicity and killing those cells. Normal cells exposed to the compound would be protected by keeping the patient in darkness until the compound has passed through and out of the patient.
The new light activated PtIV complex is also more efficient in its toxic action on cancer cells in that, unlike other compounds currently used in photodynamic therapy, it does not require the presence of significant amounts of oxygen within a cancer cell to become toxic. Cancer cells tend to have less oxygen present than normal cells.
Although this work is in its early stages, the researches are hopeful that, in a few years time, the new platinum compound could be used in a new type of photoactivated chemotherapy for cancer.

ABSTRACT: A potent cytotoxic photoactivated platinum complex [Proceedings of the National Academy of Sciencese]
We show by x-ray crystallography that the complex trans, trans, trans-[Pt(N3)2(OH)2(NH3)(py)] (1) contains an octahedral PtIV center with almost linear azido ligands. Complex 1 is remarkably stable in the dark, even in the presence of cellular reducing agents such as glutathione, but readily undergoes photoinduced ligand substitution and photoreduction reactions. When 1 is photoactivated in cells, it is highly toxic: 13-80 x more cytotoxic than the PtII anticancer drug cisplatin, and ca. 15 x more cytotoxic toward cisplatin-resistant human ovarian cancer cells. Cisplatin targets DNA, and DNA platination levels induced in HaCaT skin cells by 1 were similar to those of cisplatin. However, cisplatin forms mainly intrastrand cis diguanine cross-links on DNA between neighboring nucleotides, whereas photoactivated complex 1 rapidly forms unusual trans azido/guanine, and then trans diguanine PtII adducts, which are probably mainly intrastrand cross-links between two guanines separated by a third base. DNA interstrand and DNA-protein cross-links were also detected. Importantly, DNA repair synthesis on plasmid DNA platinated by photoactivated 1 was markedly lower than for cisplatin or its isomer transplatin (an inactive complex). Single-cell electrophoresis experiments also demonstrated that the DNA damage is different from that induced by cisplatin or transplatin. Cell death is not solely dependent on activation of the caspase 3 pathway, and, in contrast to cisplatin, p53 protein did not accumulate in cells after photosensitization of 1. The trans diazido PtIV complex 1 therefore has remarkable properties and is a candidate for use in photoactivated cancer chemotherapy.

01-23-2008, 10:19 PM #2
Lolly
Senior Member

Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Thanks Lani for this new info. I checked into Photodynamic Therapy when these skin mets started acting up again, but so far it's only been given when a patient has been off chemo for a month. I'm hoping to keep it as an option, as there's a clinic here in Oregon which so far is only using it in other cancers but have indicated they may be expanding it's use to BC. Maybe they can trial this new compound!

<3 Lolly

Lani · 10-11-2012, 03:46 PM

As I understand it, the following is FDA approved(although maybe only for skin cancers) and readily available (but I think expensive). Don't know if this is helpful ie, trial IF already accruing might be in NY, but perhaps your wife would be one of the 20% and with any luck perhaps it works better in those who are her2 + (who knows, but it is only a topical and unlikely to be associated with significant side effects)
Worth asking?

Clin Cancer Res. 2012 Jul 5. [Epub ahead of print]
Topical TLR7 agonist imiquimod can induce immune-mediated rejection of skin metastases in patients with breast cancer.
Adams S, Kozhaya L, Martiniuk F, Meng TC, Chiriboga L, Liebes L, Hochman T, Shuman N, Axelrod D, Speyer JL, Novik Y, Tiersten A, Goldberg JD, Formenti SC, Bhardwaj N, Unutmaz D, Demaria S.
Source
Medicine, NYU School of Medicine.
Abstract
PURPOSE: Skin metastases of breast cancer remain a therapeutic challenge. Toll-like receptor 7 agonist imiquimod is an immune response modifier and can induce immune-mediated rejection of primary skin malignancies when topically applied. Here we tested the hypothesis that topical imiquimod stimulates local anti-tumor immunity and induces the regression of breast cancer skin metastases.EXPERIMENTAL DESIGN: A prospective clinical trial was designed to evaluate the local tumor response rate of breast cancer skin metastases treated with topical imiquimod, applied 5 days/week for 8 weeks. Safety and immunological correlates were secondary objectives.RESULTS: Ten patients were enrolled and completed the study. Imiquimod treatment was well tolerated, with only grade 1-2 transient local and systemic side effects consistent with imiquimod's immunomodulatory effects. Two patients achieved a partial response (20%; 95% CI 3% - 56%). Responders showed histological tumor regression with evidence of an immune-mediated response, demonstrated by changes in the tumor lymphocytic infiltrate and locally produced cytokines. CONCLUSIONS: Topical imiquimod is a beneficial treatment modality for breast cancer metastatic to skin/chest wall and is well tolerated. Importantly, imiquimod can promote a pro-immunogenic tumor microenvironment in breast cancer. Preclinical data generated by our group suggest even superior results with a combination of imiquimod and ionizing radiation and we are currently testing in patients whether the combination can further improve anti-tumor immune and clinical responses.
PMID: 22767669

sassy · 10-11-2012, 05:14 PM

Hey Mike,

I'm so sorry that you all are having to deal with this.

Not an expert on any of this, but I know that Sheila had a good initial response to Halaven for skin mets. We actually saw them shrinking while we were in San Antonio last two years ago. Perhaps someone else has more info on Halaven.

Keeping you in my prayers.

Pray · 10-11-2012, 08:26 PM

Mike and Barb I'm so sorry you are going through a tough time. Gods blessings to you. Please know that you are in my prayers

MikeF · 10-12-2012, 01:23 PM

Barb had 1/2 litre of fluid removed successfully this morning. She is much more comfortable breathing now. Thank you all for the prayers and kind words the certainly helped. Now if we could just get this TDM-1 weve been fighting for, to kick some cancer A-- we would be praising Jesus. Not that we arent already, He deserves all the glory.

mmoons · 10-12-2012, 01:49 PM

Thanking God she is more comfortable, Mike.

phil · 10-12-2012, 01:55 PM

You know we are praying for you hard. That verse in Mark is one of my favorites in the dark times . we have been there. so glad Gen. and the Va. exp. access clinic gave us extra time when L. had sepsis. which was un-related to T DM-1. infection from kidney stent put in prior to t dm-1.
As i said in my PM to you , your wifes pneumonia could be slowing down response to T dm-1. just a laymans opinion. did you say your doc had decided not to aggressively tx a lung tumor ? understand his reasoning, but that tumor could affect ability to heal from pneumonia. could slow down healing .
has your doc asked Gen. docs if they have ever seen t dm-1's effect on skin mets ? how long , etc.
3 doses is not much , give it time...and much prayer . God Bless