Chemo resistant ibc?

downtownfan · December 2008

Hello-

My mother was diagnosed with IBC in late April/early May with progression to lymphnodes and lungs. She started with Adriamycian before masectomy but it didn't seem to work so her Breast Surgeon did an emergency mast as the breast just kept getting worse.

She then went on Taxol/Avistin for a few weeks but developed skin mets(although lung mets appeared to shrink). They started her on an aggressive round of radiation (her rad onc said it was only the second time he had seen burns as bad as hers). They decided because the burn was so bad she needed to go off chemo. They started for a second round of radiation but decided that it wouldn't be beneficial because she just kept getting more mets outside the radiation area. So, she went on Xeloda (after about a month off chemo) for a week but the mets just kept getting worse. At this point, she has them all over her left side and some are incredibly large like the size of a nickel or quarter and stick out maybe 1/2 inch to 3/4 of an inch.

She was also on carboplatin somewhere in there but I am not sure when or if it was incombination with the Taxol

This week the doctor put her on Ixempra but has essentially told us she thinks moms IBC is chemo resistant and "it is just a matter of time." She will have another scan after Christmas to see if it has progressed any further internally. Her last scan was in Oct.??

So, I am looking for an advice on whether anyone has had issues finding the right chemo or if there are other combinations that have worked for you. She is in TX so she could go to MD Anderson but the onc seems to think they wouldn't really do anything different in terms of treatment. She has sent her tissue somewhere to be analyzed to see if a particular chemo will work better for my mother. She has also suggested we look at a place in San Antonio that might have some experimental treatments.

This is only the second case of IBC her doctor has seen and the other case wan't so severe so I think we should seek out another opinion.

Any thoughts or advise you might have would be incredibly appreciated. I am trying to navigate through this maze myself for her and just don't know where to start.

Thank you.

Caseysmom · December 2008

downtownfan:

I would get a second opinion since she is in TX MD Anderson would be a great place to go. They have doctors that are doing research on IBC.

Good Luck

Laura

Jadai · December 2008

Sorry to hear she is having such a hard time, it is difficult when you can't really do anything to make them better. My mom was diagnosed in September as stage IV as well with mets to bone and is on Taxotere, Cytoxan and Herceptin (she is Her2 +). This chemo is really kicking some IBC butt!

downtownfan · December 2008

Thanks for both of your responses. I am working on getting her an appt. with an IBC specialist. She was just admitted to the hospital last night so I will have to see where we go from here.

ebann · December 2008

I can understand how frustrating this situation can be. I was dx with IBC in April myself. I have done many cocktails. I started out with Taxotere/Cisplatin 4 rounds, then Admircyin/Cytoxan 4 rounds. My tumor they removed was 12.5cm and they had hoped the chemo caused the tumor to shrink. Well as you can see it did not shrink. It just grew. Not as aggressively. I finally had my mastectomy and after a month found out that I have 3 positive nodes and more cancer on the chest wall. My activity level was a 6 and now from the PET Scan they are showing a 2. Which is good cause they want it to be a 0. I personally just want it over with it. Don't we all. I am doing chemo again and did chemo and radiation together which was really hard to do. Radiation they only give you an assumption it worked they are not for sure. That is what my radiologist onc told me cause I wanted to know what test needed to be taken to know if it worked. I was upset about it. Anyway's I am now doing Taxol/Carboplatin every week for 3 week with one week off for 3 weeks. I was suppose to be done 9/4 but as you can see it spread and it is not the case anymore. 1/7 is suppose to be my last time of chemo, but only time will tell on that one. I have heard of survivors who have been stage 4 and have made it no matter what the doctor told them. I have continued about me sorry about that. Take your mother to MD Anderson that is all they do is IBC. They understand it and it is a rare and aggressive form of breast cancer. Your mother needs the best. Having you as a daughter is such a blessing to her. Anything is possible do not lose hope. With my tumor they are amazed I have made it. God is good! Not sure if you believe or not, but faith is what truly gets me by. I will keep your mother and your family in my prayers.

Blessings; Elizabeth

downtownfan · December 2008

Thanks, Elizabeth.

I wish you only the best in your treatment. It is definitely a tough diagnosis but it is good that you have your faith to bring you solace and strength.

We got more bad news that it has reached her brain. She will start radiation today or tomorrow.

I am checking out clinical trials and MD Anderson.

FloridaLady · January 2009

I was labeled chemo resistant early on also. My issue though was my bc wanted to stay in soft tissue. This thank God kept my mets local. But chest wall/ skin is very hard to treat after a recurrence. I have done nine different chemo's in three years. I'm using Ixempra right not with excellent response. It did take four months. I know MDA is treating IBC the same way my local doctor is. You may want to contact ibcspouse. He has taken his wife Cam there for the past year or so. She also does not have major mets. She did have response to Ixempra after Six months with a lot of involvement. She is now on Navelbine. She is being treated at the inflammatory clinic. He is a very knowledgeable hubby.

I am so sorry your Mom disease has moved so fast. Be very careful what trials you except. Do your home work first. MDA put me in a trial that destroyed me with neuropathy and with a drug that Germany had already proven it had zero benefit for a breast cancer patient. Bigger does not mean better. If they can't give you some good reason to treat there, bring your mom home. Take the info you get from them to a local doctor. It is very stressful to get treated if you have to travel all the time.

Best Wishes to you both.

Flalady

ibcspouse · January 2009

Downtownfan

I am a fan of MDA, there are a few oncs, like Flalady has that will treat much along the lines of MDA, but the two big advantages of MDA are their imaging ablities and their radiation department. They see about 100 new IBC patients each year. The largest patient base anywhere. If you decide to contact them, they will provide a great deal of support in many ways. Supportive services will give you a team and a 24 hour a day contact number to help with pain management, depression, handicap parking permits, nutritionist, fatigue issues and other SE. The social services group with help with hotel rooms, or apartments.

I don't know what chemo combo will work for your mom. I will say that different chemo's work in different ways. There usually will be a combo that will give some response. It may be that concurrent radiation and chemo is needed for you, or low dose metrodome treatments, or high dose and stem cell. Just don't know, but as Flalady said, do not panic and look for experimental or early trials, unless you have too.

I wish you the best with whatever you decide.

downtownfan · January 2009

Thanks, IBC Spouse.

I am going to give MD Anderson a call. Mom is currently undergoing 10 radiation treatments for her brain met so we can't do much until that is finished. She should be done by the end of the week.

Jadai · January 2009

Definitely try MD Anderson, this is what they do. This type of BC is so rare that it is hard to find an oncologist that is truly experienced. Hope your mom is doing better. Please feel free to email me if you want. My mom has also been diagnosed with IBC and I am the one who makes all of the calls, takes her to appointments, etc, so I can empathize.

FloridaLady · January 2009

It maybe what MD Anderson studies. But remember you can get the same chemo anywhere. They do not treat with ANY cutting edge chemo's or chemo combo. Keep this center in perspective. I speak from experience. A very negative experience and from talking to others. Also I know my disease and know what my treatment options are. MDA can not offer anything I can't get at home.

The key is know your disease and treatment options. And find a clinic that will treat with the most up to date information. No one should feel that they have to go there to get good treatment. It just not true.

Flalady

downtownfan · January 2009

Thank you, all.

Well, here is the situation today. Her onc really wants her to go to a place in San Antonio so we made an appt. for the 13th.

She just went to the onc today. She got the scan results back and it is in her liver and the onc says spreading very fast.

She says there are couple of other chemos we can try but she wants her to go to San Antonio first. I know that FlaLady and IBCSpouse's wife were on Ixempra awhile before it kicked in but I am not sure if we have the time to wait for it to kick in at this point.

I really, really feel like we should have her see another onc. They are putting her on morphine as she is in a lot of pain. There is also an onc very close to my house in DC who was at the San Antonio conference and specialize in IBC. Her onc is trying to get her an appt with this doctor.

She seems reluctant (but not adament) to send her to MD Anderson but ultimately it is my mom's choice.

Really hard to decision to make.

downtownfan · January 2009

No, you are not being nosy. Unfortunately, I am in DC at the moment. I was there and the day I left they took her to the hospital for the brain met. She was totally fine when I left in the morning but it just came on her all of the sudden that night.

Anyway, my younger sister is with her and they are relaying info me to as they get it.

I think she is reluctant because of the aggressiveness of the cancer... and the seemingly ineffectivenss of any of chemo. They are doing some experiemental treatments in San Antonio and that MD Anderson wouldn't really have any access to drugs that she wouldn't have that is my understanding. I think she feels they would just keep trying with chemo and that just doesn't seem to be working. She did say that if the people in San Antonio can't/don't have anything that can help her that she has a couple of more chemos she can try.

The Ixempra has done nothing and the nodules on her skin continue to grow at a pretty alarming rate and are incredibly painful.

My sister is going with her to San Antonio. I guess her onc feels this is the best place to try to get some other kind of treatment beyond chemo.

We filled out the paperwork so that my sister and I have medical power of attorney. (She is technically still married but seperated so we wanted to make sure that my sister and I would be the ones to make the decisions for her if need be.)

Forgot to add the place in San Antonio is: www.startthecure.com

ladybug22 · January 2009

I would call md anderson and talk to them.i live in ky but it cross my mine to go to m d anderson they are the best.I will pray for you and your mom all the family.i was dx with i b c in07

FloridaLady · January 2009

Praying4u,

I was put into a trial for Aeroplatinum. They would not even let me talk to anyone in the breast center. I was sent straight to Phase I trial. To a doctor who knew NOTHING about breast cancer. Who treated me for four months and never examined my breast to see if there were any changes. At this time I had only done ACT & Carbo/Gemzar/Avastin and with tumor in my left breast and chest wall. They would not do a PET scan on me while in treatment. I would come home and have my local doctor do them. My neuropathy and other I had spoke to all had total disability within two month after stopping the drug. I could not walk, drive, button a button, write my own name for six months. After that I all got about 75%-85% back. Never can walk very far again! Two years after the trail someone called from MDA a wanted to follow up. I asked her what they found out about this drug. NOTHING other than it destroyed quality of life! I asked her if they were still doing the trial (2 yrs later) she said yes and laughed! Bottomline I was a big healthy rat that would make this trial look good.

The big issue with this is...I can not do chemo more than a few months and have to stop or I can't walk. (I'm all most there now again.) This will hurt my treatment options forever! I have no other side effects from 45+ chemos except advance neuropathy. I refused Ixempra until my doctor aggreed to low dose. Thank God he did I would not have taken this drug and got a lovely response I'm having.

downtownfan,

See "bourscheid" latest post. She has lung and liver mets that are just about gone with using Abraxane/Avastin. This are both standard drug that you can get anywhere with this kinds of mets.

Praying you find direction on what to do next.

Flalady

cornfieldheiress · January 2009

There used to be clinics in States that tested for chemo tolerance -fda has shut most of them down so you have to go offshore. When I was diagnosed with ibc, we sent my blood to Athens Greece:

Research.Genetic.Cancer.Centre.

Dr. Papasotiriou Ionnis MD

115 M.Alexandrou str

53070 FilotasFlorina

Griechenland-Greece.

You send your blood to their laboratories and they will tell you which chemos work in your body. Not all docs are open to this, of course. Some doctors are paid rebates for using certain chemos, I'm sorry to say. Anyway,you wire money to the clinic along with your bloodwork which are sent DHL I believe; I paid 1800.00. Results are quick-within a few days.

IBC can be so stubborn, I refused masectomy because it had already spread to my neck. I opted for hyperthermia combined with low-dose radiation in LA. They have high success rate with ibc and some other cancers. Non-invasive.No chemo. We'd get one tumor down and another would pop up but we stayed the course and killed the beast!!!! Hope this info helps

FloridaLady · January 2009

cornfield,

What a great story. I'm so glad your got a response. I did look into hyperthermia with this recurrence to skin. I could not find anyone local who would do it and low dose rads.

I did talk to a clinic here in the US that would test you for chemo resistant. They said I've done all the chemo's they have in stock, and unless I could get a sample of the newer chemo's there would be no reason to run the test. Most chemo's all come from a very few family of drugs. Example Taxol, Doxal, Taxotere and Abraxene are on family of drugs. They do not get samples of the newer drugs until they are completely through trials. I've done many drugs outside of trials.

Flalady

downtownfan · January 2009

Thank you everyone for all your comments.

1. Yes, her onc sent her tissue to a clinic to test for chemos that might work well for her. I think this is in part why she wanted her to go to San Antonio.

Cornfield, can you tell me the name of your treatement center in LA.

Thanks

downtownfan · January 2009

Thanks, Gg08. I will check that out.

She did go to San Antonio but my sister just doesn't feel like they have much to offer her. So, not really sure what the plan is at this point.

I am not sure that she can handle going to different places only to be told there isn't much they can do for her.

Her docs have already suggested hospice but she isn't quite ready for that and I totally understand. She isn't ready to face that reality nor is she ready to stop seeking treatments.

She goes back to her doctor today. So we will see what game plan she proposes. There are still a couple of different chemos she can try.

To add insult to injury, the security people at the San Antonio airport made her lift up her shirt and show them the tumors because her body is so deformed. - unbelievable.

downtownfan · January 2009

I just checked out the link and there is a place in Dallas that is doing the Hyperthermia. I think this might be a good option to try. I also talked to my mom on the phone and it would be 4 weeks before they could even do anything with her in San Antonio- no way. She doesn't have 4 weeks to to wait on them..

downtownfan · January 2009

More news. The onc is totally adament about this place in San Antonio.... totally frustrating.

I called MD Anderson but my mom hasn't gotten the forms filled out for the medical power of attorney so I can't do much. She is tired from the doctor's visit so I don't want to press her. Mom wanted to do chemo today and the onc shut her down because she thinks she needs to do the San Antonio stuff. I looked up the studies and one was testing for safety not for its efficacy on IBC and to top it all off they have never had and IBC patient there.

I just don't feel like we should start going down the road of completely experimental treatments at this point. There are still two kinds of chemo that she hasn't tried.

I talked to Mom while writing this and she reallly wants to see the IBC specialist here in DC so she is calling to make an appt. in the morning.

Thank you for your concern and help. It is very, very much appreciated.

downtownfan · January 2009

Thanks for checking up on her.

1. The DC specialist isn't taking any more patients so we were dissapointed with that.

2. When she was in San Antonio they did a biopsy that determined that Abraxene might work for her. She just started that Chemo today.

3. She finished the radition treatments on her brain and a massive single dose radiation on a spot on her back.

4. She has an appt. with an oncologist who has much more experience with IBC tomorrow.

I have been doing my best to figure out all the options right now we are trying to make it so she doesn't have to travel too much as she has been in so much pain.

She said she could feel the abraxene heating up the spots, which has never happened before so we are keeping our fingers crossed that this might do the trick.

I am still researching the hyperthermia, too.

Hope you are doing well.

downtownfan · January 2009

Hi-

Just an update on my mom. We have decided to take her to Valley Cancer Institute. My sister, her and I all fly out there on Sunday and her appt. is on Monday.

We were really insterested in the hyperthermia and it doesn't seem like that many oncologists know much about it. She saw another breast specialist who didn't know much about hyperthermia.

According to VCI, they are the only place doing it for Stage IV patients. They have experience treating IBC patients and since the standards don't seem to be working well for Mom we are trying something different.

The insurance company will cover the costs and they have on site housing for us so.... it sounds like it will work out well.

We don't know if the abraxene is doing anything at this point. She is still in a lot of pain and can barely move around so the trip is going to be tough but I think she feels good about her decision.

FloridaLady · January 2009

Please downtownfan keep us up to date. Sending prayers your way. See if you can find someone to do IPT (low dose chemo) while you are in the area. This is one more thing to help her battle and hopefully keep her with some quality of life.

Flalady

downtownfan · January 2009

Thanks FloridaLady! I will check into the IPT, too.

I hope this does help her because she is in so much pain. She can easily deal with the chemo and what not but the pear is pretty unbearable. If we can get the skin mets at least to a point they are not so painful and somewhat stabilized I think she will have a much better quality of life.

Hope everything is going well with you.

I will let everyone know what I think of VCI.

Jadai · January 2009

So sorry your mom is having such a tough time with this. I am glad that you are being proactive and involved with your mom's treatment. My mom also as IBC that has metastasized to the bone and I know it is hard on everyone. Hang in there and hope to hear good news from your visit.

downtownfan · February 2009

Thanks, Jadai. I wish your Mom all the best.

I wanted to give everyone an update on VCI. We had our first appointment today and I can say I wasn't sure what we had gotten ourselves into but.. after speaking with the doctor we feel pretty good.

The doctor visited with us for several hours and is incredibly compassionate. He obviously can't give us a 100% guarantee but he feels he can get her to a place where she isn't in so much pain. He was pretty dismayed at her condition. The skin mets are horrendous. I can't even describe how bad they are. They are definitely much worse then when I saw her a month ago.

I will keep up with the updates. She already had her first treatment today and will start radiation tomorrow.

downtownfan · February 2009

Hi Gg08. She will be here for 6 weeks (possibly 8) with two treatments a day. There are supposed to be little to no side effects. The doctor said that the most SEs people have had were blisters and that was primarily because they didn't really understand that it shouldn't be too hot or hurt during treatment. They scan the temprature but also really rely on the patient. They give you a little bell to ring if it feels too hot. The radiation is low dose so it doesn't burn the skin.

I don't know if they specifically have other IBC patients at the moment but they have had them in the past. In fact, I learned about it from cornfieldheiress on this board. I wish that we could have gotten her here sooner mainly because chemo just does not seem to work for her at all. She had more spots after the abraxene, which was pretty much the last ditch effort with her regular oncologist.

Thankfully, her insurance is covering it so we only have to pay for the apartment while we are here.

FloridaLady · February 2009

So glad your with your mom, and she has started treatment. Thanks for giving us a update.

Prayer for you both

Flalady

FloridaLady · February 2009

downtownfan,

How are things going? Think of you both.

Flalady

downtownfan · February 2009

Hi Flalady-

Thanks for checking in on us... The treatment is going well we are starting to see an improvement in her skin. The smell is absolutely horrendous. I can't even sleep in the same room.... just awful. She is still having difficulty doing things for herself like get off the toilet or up from a chair. My sister and I basically have to do everything for her. I did get a raised toilet seat, which seems to help. Also, I ordered a lift chair that I hope will help..

While the doctors in CA are a bit disorganized there is a world of difference in her level of care. As soon as the doctor saw her he immediately said we need to get a wound care nurse. She really should of had one months ago.

She is working through some stuff right now... mainly a giant blood clot in her leg, the skin mets are infected, and fluid on her lungs. The doctor put her on Cipro so, hopefully, it will knock out the infection.

It is going to take awhile but the places where they are doing the hyperthermia are looking much better. It is just so spread out over her skin that it will take awhile to get to everything.

Lastly, she had PET scan last week that came back negative for spots on her liver. Not really sure what happened.... if they weren't ever there or if the Abraxene.

So far, I would reccommend this place to others. Again, while they are a bit disorganized I do think that they understand IBC better than her other doctors and they hyperthermia treatment seems to be working well for the skin mets.

Chemo resistant ibc?

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