Need some advice

[Angiemarie2000]

As most of you know, I've had a rough month. I did not get the pump at Sloan, they found belly mets (lots from what I understand). They did take out one tumor infested ovary.

So now I'm faced with belly mets and liver mets, oh and a handful of nodes.

My old chemo regiment stopped working, so now I'm on oxi and 5FU with talks about adding zaltrap.

But I want to do spheres on my liver and HIPEC, what comes first? What my biggest risk (liver or belly)

The doctors are trying to give up on me and keep pushing hospice, but I'm not sure why. I still eat, get out of bed, do light house work, drive. I have lots of pain, but the med are controlling it. So why such a hard push for hospice, I feel like I still have options out there and I don't feel all that bad.

I am also planning on starting juicing and supplements, I figure it can only help. I've been eat a balanced diet, but now I'm going to cut out all the questionalable stuff (sugar, meat (except fish and some chicken), all processed foods, a few other things that living strong recommends too)

I know this is a ton to drop in one post, it's just beenon my mind and the doctors ( I've seen many) don't seem to want to fight that hard for me anymore

I do go to see a new onc tomorrow at a MDA clinic out of a Florida clinic, I sure hope he will help me fight.


Angie

[SoConfused]

hi Angie, I can't offer any advice ... but I can offer you prayers. I hope your meeting with the new onc goes well tomorrow. Keep livingSTRONG.

[Jack&KatiesMommy]

I am thinking of you also Angie....and I would keep meeting with doctors (oncologists AND surgeons) until you find one willing to fight for you! I don't know much about HIPECC ...SIR Spheres....but I am thinking with either you would need to be off chemo for a period....which could be the issue as the other (depending on which you attacked first) would grow while off chemo. Maybe getting things under control with chemo first and then opting for the one that would require the shortest time off chemo would make sense?
Cynthia

[jacekica]

I am sorry for such unexpectedly bad results, but I will pray a lot for you and new onc. THese docs told as they see how you are now, but you know the best how strong and willing t push for new treatments and schrinkage of mets, HIPEC and liver surgery, whatever come first. I always believe that there is more to do than anyone else can imagine, I had a friend who lived full and quality life for 12 years with the worst stage of metastatice melanoma, when docs gave her only 3 months to live - so I KNOW people can do so much more, she control her disease with macrobiotics (surgery also,...for biggest mets), she lost her battle when she start to eat conventional way - here in Croatia macrobiotic was at the beginning ( more than 20 years ago) all was very expansive, she went to ENgland to learn cooking, buying the essential a broad...
it is off topic in a way, but surely ON topic for you, I think.
God bless!

[jeanette57]

If they think you should give up, then go wild. First - juice and detox liver - Try this detox
Liver detox
4 cups of kale (baby kale at costvo cheap and organic)
2 cups fresh parsley (metal detox for liver)
2 cups chilantro - viral protection cleanner
optional but I like it.
2 cups apple sauce
1 cup coconute water or organic fruit juice-
blend in parts until smooth and sweet.

Next on this wild trip - I can't help you with where or how but in my cancer group met "several" past stage 4 - should have died years ago - type of people. I hear the same message from them. Odd but more and more are going this way. Medical or not Marijuana. The lung cancer lady did a tar (??) a rectal lady did suppository but the one I watched on youtube was the juicing. Fresh leaves etc. I don't know a lot about this drug but more than 10 people have told me about it. I think some smoke it but that is not something I woule ever do. Oh, forgot last friday, brain cancer patient getting pill form of this and tumors stopped growing.

If you want to know more on detox and cell level foods and nutrition, watch off netflix or such "hungry for change" the 5Fu will kill your liver if you eat aspertaine. Darn it just watch the movie and see what all the chemicals are called for this and MSG. Chemo brain and all this was very well put together movie/document.

[some]

Angie,

I have been worrying about you. I was distracted the last couple weeks by our trip for surgey but we go home today. Are the doctors at Sloan pushing you to hospice? That's really tough. I believe from what I've read that the liver needs to be well controlled before hipec because you have to be off chemo for a few weeks before and some after while you heal as it is pretty major surgery. You don't want to give it a chance to grow.

How are you doing on the folfox? I know you had trouble with an allergy that they had to fix. When would they scan to see?

Also, I understand that hospice can be an insult when you are trying to fight for your life. Please know that hospice isn't all about preparing to give up. They offer pain control which could perhaps help you. If you don't want to use it for that aspect, I think you should get in touch with a pain management doc because you shouldn't be in a lot of pain each day. It makes it hard to do all the other stuff you need to fight.

I love your spirit Angie and pray the chemo is helping so you can get the surgeries you need ASAP.

Let me know if I can help gather information for you. Let us know how the MD Abderson appointment goes. Thinking good thoughts so you can get someone to fight this hard with you.

Serena

[juliej]

Angie, I'm praying that you find a new game plan soon. Whatever it is will involve controlling all the mets (belly and liver) until things are more in control -- maybe intraperitoneal chemo for the belly and a systemic for the liver. Also, meeting with a pain management team might help you control your pain better.

Sending a ton of love to you from NYC -- and praying you have a good meeting with the new onc tomorrow!

[Kathryn in MN]

Remember, hospice isn't always about the end, or giving up. We have a member in our CT Four Corners group who was on hospice and they really helped him manage pain. He is OFF hospice now. (And early last December, he thought he'd only have weeks or months to live.) You might want to ask there about using hospice for pain management.

The biggest worry for you is that if you are only doing HIPEC or liver surgery, you'll be off chemo a long time to do either procedure, so with how quickly it started growing before, that would be a concern for the area not getting the surgery - I don't think they ever do both at one time.

So it seems you need chemo first to get things under control again. Maybe try Zaltrap? Ask your oncologist. I can't believe how well it worked in combo with Irinotecan for me - way better than Irinotecan + Avastin. (Some bad side effects, but NOT normal for most people, so I don't factor that in when recommending it as a possibility for someone.) If you could get the liver mets under control - shrunk down to almost nothing, then maybe you could do HIPEC. Chemo is more likely to help the liver than the abdominal mets that are not in an organ or node, so this is why I think you'd be more likely to have it play out this way.

[debzak]

GET A SECOND OPINION!!! Sloan won't go out of the box. They are research oriented. They tend to not want patients that are not curable. My parents have a friend who have a 20 MONTH old grandchild who has tumors all over (internally) Sloan told them to "go home" and "enjoy" the time they had left . The baby has been receiving chemo at a hospital in NJ and last I heard the tumors were shrinking. If you are not a good statistic, than I don't think Sloan is your place.

Good luck with the new doc.

Debbi

[Angiemarie2000]

Thanks everyone you have given me a lot to think about. I was told by the new onc today that they won't do HEPIC or Sphere because I have tummy and liver involvement. He is a med onc, I think I need to see a surgery and radio onc's. I asked about zaltrap and was told no, that this onc doesn't see any additional benefit. ( I am tired of these onc telling me no, it's my darn life and body grrr!)

I did see a palative doctor in MN that has gotten my pain under control , so I'm doing good there.

One onc told me that sir spheres can damage the liver to the point that chemo won't ever be an option, has anyone ever heard this?

I will get a new scan after 2 more treatments, we will see if the new chemo is working and go from there. Sloan was at least willing to do the SBRT for me, I just need to see how chemo is going. The are still desensitizing me each treatment, so far it's been ok, the 5FU kicks my butt, lots of fatigue.

Thanks for the juice receipt, please keep them coming.

I welcome all the advice

Angie

Thanks for the prayers, I love themandneed them.

[Kathryn in MN]

Sloan is against Zaltrap and a few others followed suit. My oncologist insists that we should look at each individual case, and there should never be a blanket decision made for all patients that a practice or cancer center won't give an approved drug to patients. I am living proof that there is absolutely a difference in Avastin & Zaltrap for some patients. Who knows if it would make any difference for you or not, but it might. That should be YOUR decision if you want to try it.

Glad to hear your pain is under control! One thing taken care of. SBRT would only require a very short chemo break. You could do chemo, and then when it is time for the next cycle, do radiation that week. Usually SBRT is just 5 sessions, but can sometimes be 10. A word of warning - PET scans will show false positives for several months after radiation. So if you do get it, remember that.

[karin]

Maybe you should self refer to a HIPEC surgeon....that's what I did way back when. Maybe get liver resection at same time.
Good luck

[Fede]

The doctors are trying to give up on me and keep pushing hospice, but I'm not sure why.
I still eat, get out of bed, do light house work, drive. I have lots of pain, but the med are controlling it. So why such a hard push for hospice, I feel like I still have options out there and I don't feel all that bad.

Angie

Hi, Angie

Before all, this is what I tried to say here a lot a lot a lot of times, I CAN NOT BELIEVE HOW A DOCTOR COULD SEND SOMEBODY AT THE HOSPICE... I WOULD SEND THEM THERE... are they crazy... a mom with children and they are saying it? They are not proffesionals, don t care where they are working... one day they will spend for it too... we were listening it since two years ago, pathetic...HORROR...

My old chemo regiment stopped working, so now I'm on oxi and 5FU with talks about adding zaltrap.
But I want to do spheres on my liver and HIPEC, what comes first? What my biggest risk (liver or belly).
I am also planning on starting juicing and supplements, I figure it can only help. I've been eat a balanced diet, but now I'm going to cut out all the questionalable stuff (sugar, meat (except fish and some chicken), all processed foods, a few other things that living strong recommends too)
I do go to see a new onc tomorrow at a MDA clinic out of a Florida clinic, I sure hope he will help me fight.
Angie

Now, Angie the important thing.

We were talking about the most important thing here. It is not waiting for a plan, they can help for sure...but you have to think your own plan, like Kathryn is doing. I love her strenght.
You know wich is my opinion respect to the spheres, it is for only a few mets into the liver, but not for a lot of micromets (don t forget you are candidate for the HAI PUMP) and the MSKCC had cared its prestigious name ...giving up at the HAI pump.

1-=> You know that I am frank with you, for multiple scattered micromets the spheres will not solve the problem and radiation into the liver is dangerous for me, if you are attacking some mets and other ones are borning. TAKE IT CARE.
2-=> Respect to the belly I like the HIPEC idea with a good technique and expert surgeon.

I don t agree with Kathryn respect to do firstly chemo and then both procedures, for me it is riskier... what happen if chemo will not work IRI+ Avastin or IRI + Zaltrap ?

So I would do 1. (doing HAIs with FUDR/IRI or Mitomycin) repeating sessions if it is necessary) and 2. HIPEC for the belly and then perhaps if you need IRI and Avastin later, or mitomycin and avastin, zaltrap only in low doses I have a bit of care about it, but all is relative.

In the meantime (short time = days) not sure which is your blood sugar level, but

=> I would take metformin daily to maintain starving of glucose at the beast as quiet as possible. if you have 100-110 glucose level, I would try with metformin, trying to get a drop to 70 - 75 blood sugar level and monitoring it.
= > Adding supplements and herbs to improve the immune system and perhaps some immunomodulators I posted the link of them.
= > Trying to recover weight if you lost it, continue eating proteins, Asia diet and fats, no carbs or stupid sugar.

I see the HAIs as a possible solution for the liver multiple scattered micromets.
I see the HIPEC interesting for the rest of your belly.

If it works, you could enter into the M.D. Lin protocol using Xeloda more Celebrex to keep you free of cancer.

I hope it serves you.

The best for you

Fede

[weisssoccermom]

Angie,
I wish I had some advice for you but I don't. I only know of two people who had spheres and really no next to nothing about them.
Hopefully you can find a doctor who is willing to work with you on some combination that will help at least stabilize what you have while then trying to figure out what to do as the next step.

I would like to caution you about the metformin. That is a prescribed drug and one that you shouldn't be taking without a doctor's Rx and without being under his/her care. Lowering one's blood glucose level too low (and 70, FYI, is on the border of that) can be dangerous. With any drug that lowers your blood glucose levels, you have to worry about going too low. Trust me, it is NOT at all a fun place to be when that happens.

Jaynee

[Angiemarie2000]

Thanks for the additional advice, I so need every bit I can get. My CEA jumped up from 200ish to 310 this weekl. Just so frustrated with this new onc in Florida. I feel it should be my call, it's my life!


@ FEDE, please resend me the link, I missed it. Also Sloan said NO to the pump for me, the opened me up and found mets to the abdomin and then closed me without the pump.

The new onc ordered a brain scan today, I felt like for no reason other than to give up on me, I have no symptoms!

I am happy that the onc board at MDA in TX will see my case! That one win! Can't wait to see if they any ideas.

So has anyone here had liver involvement at gotten HIPEC? Or SBRT or Sir spheres with abdominal tumors?

OH he did agree to do radiation on the nodes, since they are the main cause of my pain. He just wants to wait two more treatments then scan.

Next treatment is Febuary 5 th,so I'll be offline and sleeping that week

Angie