update - what to do?

Pam P · 08-19-2010, 04:04 PM

From my previous post a couple of weeks ago... I still have the rash on arms, legs, neck, face and swelling under each eye. I also have the worst mouth sores ever.

I saw the onc. today. Tumor marker ca2729 UP again - now 2991! Current tx not working. He took me off everything: xeloda, tykerb, herceptin, aromasin. Want me to take 2 weeks off and hopefully get all these side effects or allergic reactions cleared up. I actually stopped taking the oral stuff on Monday myself.

In 2 weeks I'll see him again and decide next tx. The 2 choices are:

1) abraxane, herceptin (& continue zometa). I haven't had abraxane before so this could work okay for me.

2) tdm1 eap .... IF I can show progression on xeloda. The raised tm's don't count - it has to show on a scan. My last pet/ct in early July was stable. I will have another scan within the next week or so.

If scan is stable I don't qualify for tdm1 according to research study nurse, so then abraxane is my tx. If scan shows progression (I don't want to even hope for progression) then I can maybe qualify for tdm1 eap.

The closest place for me to get tdm1 is in Cedar Rapids IA - about 280 miles from me. This would be a hardship for me in travel, expense, schedule coordination etc. I don't think I can drive that far by myself these days so will need to find people to go with he. I couldn't do it in one day either so each trip would include an overnight stay.

My onc. says he'll support either choice. He thinks the tdm1 "might" have better success for me - but only slightly and just a guess on his part - not a vote one way or the other. As excited as we all are about this new drug it's still not a magic bullet. My onc. also says whichever one I go with now.... when it fails the other one will be in my future anyway so it's just a matter of which order to choose.

genentech tells me there are 9 eap sites open now. They plan to have 20 open in the US but cannot tell me where or when others might be. There already is a clinical trial here in Mpls (which I don't qualify for) so maybe if I go with the abraxane now I can get the tdm1 loacally later - either on eap or fda approval. If not I could still arrange to go to IA.

So I'm thinking .... will see what the scan shows before I get too committed to one choice just in case nothing new shows up. In the meantime I have sent records in to Cedar Rapids site but can do no more right now.

Now I'm headed for a lovely meal of mashed potatoes and popsicle for dessert which is all I can tolerate in my mouth today.

Pam

Carolyns · 08-19-2010, 04:36 PM

Hi Pam,

Oh gosh... I think that it is a good thing that you may have two choices. It is hard to say what to do. I travelled for TDM1 and it ended up costing me about $15k and some other more than what we would call bumps in the road.

Are you going to have CT Scans or just PET? My docs won't move on PETs alone.

I am sure that you will make the right choice whatever you go with.

Love, Hope, Peace, Carolyn

Pam P · 08-19-2010, 04:39 PM

Carolyn - 15K!!! that's out of my range so that may be my decider right now - too bad it comes down to $$, but that's reality too. I am going to get a pet/ct. Yes, it is good I have choices. Pam

Lori R · 08-19-2010, 05:13 PM

Pam,
So sorry that you are back into decision mode. It does sound as if your approach is well thought out, so when more data is available you will make the decision that you are comfortable with.

I just wanted to provide you reassurance if you decide Abraxane is the next step.

I was on it last year via weekly cycles. It was VERY tolerable. Due to the Alubium coating, it is better targeted to tumor cells. If your system needs a break, this would seem like a good option.

Really....no mouth sores, minimal hair loss, no neuropathy.

Keep us posted and we'll be our sounding board for confirming you decision.

chrisy · 08-19-2010, 05:39 PM

Pam, I could be thinking of someone else but I think Carolyn traveled a long distance - so had flights as well. I doubt the financial impact would be as severe for you, bit would not be free (unless you could get help from insurance on this).

Still, even 280 miles is a long long way to go, and as you say would involve overnight travel (at least until a site closer to you opened up).

Much as I am a proponent of TDM1, it sounds like it could be very draining - part of your decision might be "am I up to it" vs. getting the abraxane locally first. Your onc is right, which one would work better is just a guess; but remember one of the more remarkable things in the early TDM1 studies was the number of prior therapies. And it works so differently that I remain hopeful it would perform better than expected.

You will make the right choice for you, just listen to your heart. In the meantime, mashed potatoes and popsicles will help.

Hugs,
Chris

Mary Anne in TX · 08-19-2010, 07:27 PM

Pam, the mouth sores are totally the pitts. I remember standing out on the point by my condo looking at the water and just crying giant tears, my mouth hurt so much. Then I'd get mad, eat ice, and go some more. I think when you get some relief from the mouth sores and other crumby stuff, your mind will get peaceful about which decision to make.
If you do decide on the trip, isn't there an organization that pays for your room if you have to stay over for treatment. My brain won't recall the name of the org., but I remember visiting with a patient in the radiation waiting room who was riding the bus and the bus and room were paid for by some org. Wish I could remember more. Maybe someone will know who to call.
Much love to ya, ma

sassy · 08-19-2010, 07:54 PM

Pam,

You might try cancercare for help with travel. I know a a few people that have received travel funds from them.

http://www.cancercare.org/get_help/a..._financial.php

You might also check the links listed under the Resources tab here on HER2support. There are several foundations and organizations that might be beneficial to you.

I hope the discomfort subsides for you very soon and your next step leads to success.

Jackie07 · 08-20-2010, 02:27 AM

Pam,

Mouth sore is aweful. Have you been using the special mix for it? There's a thread on the subject using the mix of maalox, leidocaine, and...? It had worked for me during chemo.

I thought the American Cancer Society has a service to drive cancer patients to their appointment. Have you talked to your local chapter about it?

Sending you good vibes...

Ellie F · 08-20-2010, 03:45 AM

Pam
Have you tried manuka bee propolis for the mouth sores?? A herbalist recommended it and it worked really well for me. Since then a number of others have tried it with good effect.
I am sure you will be able to get it in the States but if you have any problems I would gladly send you some.

Ellie

Lien · 08-20-2010, 05:33 AM

Hi Pam,

This is a complex situation. Not only are you dealing with possible progression and choosing a new tx, you also seem to be having allergic reactions. Can't really help you with the first decision, as you seem to have it all thought out and it's a waiting game right now. You may want to try a bicarbonate of soda rinse. A teaspoon in a small glass of water and rinsing and gargling may give you some relief.

Hang in there!

Hugs

Jacqueline
(who used to suffer from terrible mouthsores because of an allergic reaction to composite fillings in her teeth)

ElaineM · 08-20-2010, 10:36 AM

Even though the road may be bumpy at times I honor you for hanging in there !! You are a great lady !!
Have you tried putting things in a blender and making purees or smoothies? That would give you more nutrition while you work through the mouth sores.
I enjoy making juices from a variety of fruits and or vegetables. I make some of my own soups and pasta sauces. I have been making alot of juices, and a little soup for a friend who had to have her jaw wired shut after a serious bike accident. Can you drink almond milk? It is quite good and comes in a variety of flavors.
I heard ice cubes are good when a person has mouth sores. What about making some juice and putting it into ice cube trays to suck on when you feel like something cool and soothing? You can buy ready made juice and do that if you don't feel up to putting things into a blender.
I can't tell you what to do about the drugs. That is your decision, but I would take some Abraxane with Herceptin or Tykerb until the T DM1 becomes more accessible.
Good luck. I have all my fingers crossed for your success. Take good care of yourself.

Joan M · 08-21-2010, 02:50 PM

Pam,

I'm sorry to hear that your tumors markers have gone up and that you're dealing with severe mouth sores.

I think your onc did the right thing taking you off everything for a few weeks so that you can regroup physically and emotionally. I also agree with what he said about going either route with the other route being available. The scans will help in making your choice.

I'm glad you have a few choices.

Joan

Carolyns · 08-21-2010, 07:02 PM

Pam - Chrisy is right. I flew round trip from Florida to Detroit every week for 12 weeks in the study. Prior to that I had to go to Detroit about 6 times to get in the study. In addition to the airfare I paid for daily meals about $60 per trip and transfers back and forth from the airport to the hospital via private car which were $120 per trip. After getting "locked down" in the hospital (long really bad story) over a weekend I never made the trip alone again... so I paid my airline ticket and one for a friend to go with me.

I don't think price alone should make your decision. First of all I am sure that you could do it for much less money than I did. It was just a shock to me what I ended up spending because of all of the complications I encountered.... that was my experience and doesn't have to be yours.

I know you will make the right decision based on what you learn. TDM1 is a great drug and I hope that you decide based on all of the information you gather and not my own personal experience / comments on the cost... there was a bunch that went into those numbers as I tried to explain.

Love, Hope, Peace, Carolyn

Chelee · 08-22-2010, 12:48 AM

Pam, I'm so sorry to hear your current trt wasn't working...darn it! I sure hope all your side affects clear up quickly. Those mouth sores are the worse...you poor thing...my heart really goes out to you.

It's so hard to make these kinds of decisions on "what next"? But once you get the results back from your scans I have a feeling you will know what to do at that time. I have to agree with Chrisy about the T-DM1. It's really done great in women that have been thru multiple therapies when all else has failed. As far as T-DM1 the distance alone would be very hard on you. I was having a difficult time just thinking about going two hrs each way--that is nothing compared to what your dealing with. I will keep you in my thoughts and prayers...and part of that prayer will be for a "new" site with T-DM1 will pop up some where close to you soon. Let us know how things go. Hang in there...I know it's not easy. Sending you positive thoughts and a really BIG hug!

Chelee

Chelee · 08-22-2010, 03:03 AM

Pam, I just wanted to add one more thing in case you do get a get a chance or find a way to try T-DM1. I went back to read what Irene said about T-DM1 as I remembered it worked so well for her. (I do agree it might not be a magic bullet for everyone...but so far it seems to have worked really well on most everyone I've heard about.) Here is one paragraph from Irene's post.
__________________________________________________ __
On herceptin/dmi trial

>>>>Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.<<<<

I found this sentence in another post from Irene about T-DM1.
>>>>This has been working miracles on me and would like to be given another chance.<<<<
____________________________________________
As you know Irene had been on so many chemo regimens since 1996 thur 2008--so I think that says alot coming from her. For her to say she has never responded that well to any chemo is exciting to me & gives me so much hope for all of us women that need this drug. I just wish they would hurry up so those of us that need it don't have to fly across the country and go broke trying to get to a trial site. I wish you didn't have to deal with any of this. Hang in there.

Chelee

Nancy L · 08-22-2010, 02:48 PM

Pam

I found this information on the Komen site and you may find one of these resources helpful. Since the info was last updated in 2010, it should be current phone numbers, etc. I know this is a stressful time for you and I hope you can get the best treatment possible for this recurrence. You shouldn't have to also worry about the logistics of getting the right care. I hate this disease and all the human suffering it has brought to so many.

Hugs, Nancy

Transportation and Lodging Assistance

Transportation Assistance

Local Transportation

Some people living with cancer find it hard to get to and from their treatments. If you need local transportation assistance, the American Cancer Society has a program called "Road to Recovery”. For more information, call 800-ACS-2345 (800-227-2345) or visit their website at www.cancer.org.
CancerCare's AVONCares program also helps with transportation to and from treatment. Call CancerCare at 800-813-HOPE (800-813-4673) or visit their website at www.cancercare.org for details.
City, county and state agencies can also arrange for low-cost or free local transportation for people who are disabled. For more information about these services, contact your city, county or state transportation department. The social work and patient relations departments at your hospital may also have information on transportation programs.
Long-Distance Transportation

If you have to travel far from home to get treatment, there are several organizations that can help.
Air Charity Network
A group of similar organizations that offer air travel to people living with cancer and their caregivers.
(877) 621-7177
Corporate Angel Network
Uses empty seats on corporate aircraft to help people living with cancer reach treatment centers.
(866) 328-1313
Lifeline Pilots
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 822-7972
Mercy Medical Airlift
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 296-1217
National Patient Air Travel HELPLINE
Offers air travel to treatment centers for people living with cancer and their caregivers.
(800) 296-1217
Raquel’s Wings for Life
Offers air travel to treatment centers for people living with cancer and their caregivers.
(940) 627-1050
Lodging Assistance

If your hospital or treatment center is far from home, there may be times when you and/or your family need to find overnight lodging. Many hospitals and treatment centers can arrange a discounted rate at a nearby hotel or motel for you and/or your family. The American Cancer Society has a number of Hope Lodges that provide lodging for families during cancer treatments. To find out if there is a Hope Lodge near your hospital or treatment center, visit the American Cancer Society website or call 800-ACS-2345 (800-227-2345).
Updated 01/27/10

Rich66 · 08-22-2010, 03:17 PM

Are the mets solely in bone?

Pam P · 08-22-2010, 03:38 PM

Nancy - Thank you for all the travel resources!

Rich - Yes as far as I know only in bones.

Everyone - thanks for all the tips and kind encouragement. Pam

Rich66 · 08-22-2010, 04:24 PM

Thoughts:
Denosumab
Metronomic cytoxan
Faslodex
Curcumin, Boswellia, green tea, aspirin

Might want to avoid Neupogen type drugs..some think may increase bone mets.

If you have bone mets, you may have felt compelled to consume lots of dairy...but it may be contributing to an inflammatory state.

Have you had OH-25 Vitamin D level checked?

You also have a potential benefit from estrogen/estradiol (as seen here recently)..especially since it isn't in an organ like the liver.

Is it diffuse bone mets or in a particular spot? I mean..is a local therapy like radiation of potential benefit?

What schedule of Zometa are you on?

Have you had estradiol levels checked?

Darlene Denise · 08-22-2010, 04:25 PM

Pam: I just had a bad scan on Navelbine/Herceptin and have started the paperwork for TDM1. My onc wanted to do Abraxane/Herceptin or re-visit Taxol/Carbo/Herceptin. If I qualify for the trial I want to pursue it. Right now my MUGA and liver enzymes qualify. That could change and I would not be eligible for the EAP TDM1. So, I want to get it while I can. I will have to travel from Va Beach to Nashville.

I noticed on a previous post that Carolyn mentioned expense in the $15k range and that you indicated that would not be possible for you. I was wondering if you have life insurance that you could obtain Accelerated Benefits on to help fund your treament travel expenses. If you do and need some info, I'll be glad to help you along. I have a life insurance background. I have done so with all three of my policies over 2 years ago and have kept the money available for reasons just like this.

Just wanted to pass this along and let you know there is another sister out there thinking of you and sending her best.

Stay strong....Darlene