Need Help, please

[Adriana Mangus]

Hi everyone: I had an appointment with my onc 1-22-08, here's the scoop.

Last ct chest scan shows tumor is growing so a change in treatment is necessary since I have been on navelbine twice and it has finally lost its effectiveness.

Onc said that since am doing well and I feel great that he's hesitant to put me on a taxane. He mentioned neurophaty, hair loss..bla bla bla..
My situation is unique to him since mets to rt lung since 2003 has been localized only to that area. I do feel great but I know I need to keep this monster under control...As far has hair goes I do not care if I loose my hair again..I just want to be here for my husband and daughter, bald or not.

Onc said that he was going to meet with his colleagues and present my case to them before making a decision to whether put me on a chemo or radiate the lung. Onc has never treated anyone with my condition with radiation...he did mention that people with lung ca do get radiation in their lungs and some get to be NED for long periods of time, but that's not my case, since I do not have lung ca.

DO you know anyone with mets who's received radiation and has done well?.

I do not want to receive radiation unless there is proof that it's going to work. Other thing the onc mentioned is whether to continue with herceptin along with radiation, or discontinue herceptin during radiation.

I have an appointment before February 19th and will need to make a decision then. Even though I still do not have information regarding his meeting with his colleagues, I would like to know if anyone in this site has known anyone who successfully has gone through radiation and/or would like an opinion regarding this situation.

Please I need all the help you can provide me with. Thank you so much.

[Jean]

Hi Adriana,
I do not have first hand knowledge in radiation and herceptin.
But I did some research for you and found the following aritcle
which I have linked for your review.

Since your lung met is on your right side, the article reports that
it is safer for your heart to receive radiation on the right side and
newer radiation machines provide safer treatments. If you do decide
to have treatment with radiaiton MAKE sure the facility has current
and updated equipment.

http://www.medicalnewstoday.com/articles/49733.php

Will keep researching and post anything I find.
All good wishes,
Jean

[jones7676]

I can't tell you what to do, but my doc in Chicago said that they do not usually do radiation to a met to the lung unless it makes you uncomfortable. I do not know if this is the standard. I also know that you usually sign a waiver at the radiologists that says they do not guarantee it will work. Whatever decision you make I wish you luck. Abraxane and Tykerb has wiped out my lung met and nodes in my chest as well as bone mets. If you read my signature you will see that they tried several things before this and it never went totally away before. I just hope this lasts! That is the unknown at this point.

I hope you get really great recommendations and that they work. Please keep us updated, I will be sending positive thoughts your way and keeping an eye out for your posts!

[Jean]

Adriana,
a short article on herceptin and radiation.

http://isopp.org/tiki-print_article.php?articleId=407

Jean

[Sheila]

Adriana
Any chance on getting an appointment to see Dr. Slamon there in California and get his opinion? His is one I would want if I was looking for a second opinion...I think Jean went to him....I think he would give great insight.....wishing you a good response with whatever treatment gets the go...there are still many for you out there. By the way, I have been on Taxol for 8 months and except for the hair loss and a few nosebleeds, I have done well...I am just starting to get the leg neuropathy...seems worse the first couple days after treatment.
By the way, how is your husband doing? He is in my prayers every day.

[Mary Anne in TX]

Adriana, you're already getting great ideas and suggestions, but I wanted to add my love and prayers for a good choice and outcome. ma

[Ceesun]

Adriana, I have had one lung met-possibly two and have been on Xeloda-Navelbine and Herceptin with good results so far. My onc never mentioned radiation to the lung as an alternative...only surgery and chemo. Good Luck with this, I would be interested to know what you pursue....your fellow July 16th b-day gal. Ceesun

[tousled1]

Adriana,

I have lung mets - several nodules in both lungs. I've been on Herceptin/Taxol/Carboplatin since July. Latest scan showed some improvement but also very slight progression in one nodule. I'm going to continue treatment with the Herceptin/Taxol and drop the Carboplatin.

[Lani]

make whatever amount of radiation is given work more efficiently ie," more kill for your buck"

In addition, there is a combination treatment which also seems to make radiation work more efficiently AND protects the lung from post-radiation scarring

You might want to print out the abstracts from some of these:


1:
Related Articles, LinksJellett L, Harrison C, McAleese J.

Letter to editor. Re: "Effect of concomitant use of pentoxifylline (PTX) and alpha-tocopherol with radiotherapy on the clinical outcome of patients with stage IIIB non-small cell lung cancer".
Med Oncol. 2007;24(3):360. No abstract available.
PMID: 17873316 [PubMed - indexed for MEDLINE]
2:
Related Articles, LinksMisirlioglu CH, Demirkasimoglu T, Kucukplakci B, Sanri E, Altundag K.

Pentoxifylline and alpha-tocopherol in prevention of radiation-induced lung toxicity in patients with lung cancer.
Med Oncol. 2007;24(3):308-11.
PMID: 17873306 [PubMed - indexed for MEDLINE]
3:
Related Articles, LinksBese NS, Munzuroglu F, Uslu B, Arbak S, Yesiladali G, Sut N, Altug T, Ober A.

Vitamin E protects against the development of radiation-induced pulmonary fibrosis in rats.
Clin Oncol (R Coll Radiol). 2007 May;19(4):260-4. Epub 2007 Jan 12.
PMID: 17433970 [PubMed - indexed for MEDLINE]
4:
Related Articles, LinksMisirlioglu CH, Erkal H, Elgin Y, Ugur I, Altundag K.

Effect of concomitant use of pentoxifylline and alpha-tocopherol with radiotherapy on the clinical outcome of patients with stage IIIB non-small cell lung cancer: a randomized prospective clinical trial.
Med Oncol. 2006;23(2):185-9.
PMID: 16720918 [PubMed - indexed for MEDLINE]
5:
Related Articles, LinksNieder C, Zimmermann FB, Adam M, Molls M.

The role of pentoxifylline as a modifier of radiation therapy.
Cancer Treat Rev. 2005 Oct;31(6):448-55. Epub 2005 Oct 12. Review.
PMID: 16225996 [PubMed - indexed for MEDLINE]
6:
Related Articles, LinksOsterreicher J, Pejchal J, Skopek J, Mokrỳ J, Vilasová Z, Psutka J, Vávrová J, Mazurová Y.

Role of type II pneumocytes in pathogenesis of radiation pneumonitis: dose response of radiation-induced lung changes in the transient high vascular permeability period.
Exp Toxicol Pathol. 2004 Dec;56(3):181-7.
PMID: 15625787 [PubMed - indexed for MEDLINE]
7:
Related Articles, LinksOzturk B, Egehan I, Atavci S, Kitapci M.

Pentoxifylline in prevention of radiation-induced lung toxicity in patients with breast and lung cancer: a double-blind randomized trial.
Int J Radiat Oncol Biol Phys. 2004 Jan 1;58(1):213-9.
PMID: 14697441 [PubMed - indexed for MEDLINE]
8:
Related Articles, LinksRübe CE, Wilfert F, Uthe D, Schmid KW, Knoop R, Willich N, Schuck A, Rübe C.

Modulation of radiation-induced tumour necrosis factor alpha (TNF-alpha) expression in the lung tissue by pentoxifylline.
Radiother Oncol. 2002 Aug;64(2):177-87.
PMID: 12242128 [PubMed - indexed for MEDLINE]
9:
Related Articles, LinksOsterreicher J, Králik M, Navrátil L, Vávrová J, Skopek J, KnÃ*zek J, Macela A.

Apoptosis and bcl-2 expression in irradiated lungs and the effect of pentoxifylline.
Acta Medica (Hradec Kralove). 2001;44(4):125-30.
PMID: 11836847 [PubMed - indexed for MEDLINE]
10:
Related Articles, LinksOsterreicher J, Mokry J, Navrátil L, KnÃ*zek J, Vávrová J, Skopek J, Macela A.

The alveolar septal thickness and type II pneumocytes number in irradiated lungs, time expression and the effect of pentoxifylline.
Acta Medica (Hradec Kralove). 2001;44(1):15-9.
PMID: 11367886 [PubMed - indexed for MEDLINE]
11:
Related Articles, LinksKwon HC, Kim SK, Chung WK, Cho MJ, Kim JS, Kim JS, Moon SR, Park WY, Ahn SJ, Oh YK, Yun HG, Na BS.

Effect of pentoxifylline on radiation response of non-small cell lung cancer: a phase III randomized multicenter trial.
Radiother Oncol. 2000 Aug;56(2):175-9.
PMID: 10927136 [PubMed - indexed for MEDLINE]
12:
Related Articles, LinksJohnson FE, Harrison BR, McKirgan LW, Raju PI, Roy TK, Virgo KS.

A phase II evaluation of pentoxifylline combined with radiation in the treatment of brain metastases.
Int J Oncol. 1998 Oct;13(4):801-5.
PMID: 9735411 [PubMed - indexed for MEDLINE]
13:
Related Articles, LinksRussell KJ, Wiens LW, Demers GW, Galloway DA, Le T, Rice GC, Bianco JA, Singer JW, Groudine M.

Preferential radiosensitization of G1 checkpoint-deficient cells by methylxanthines.
Int J Radiat Oncol Biol Phys. 1996 Dec 1;36(5):1099-106.
PMID: 8985032 [PubMed - indexed for MEDLINE]
14:
Related Articles, LinksStelzer KJ, Koh WJ, Peterson LM, Griffin TW.

Effect of high-dose pentoxifylline on acute radiation-induced lung toxicity in a rat lung perfusion model.
Int J Radiat Oncol Biol Phys. 1996 Jan 1;34(1):111-5.
PMID: 12118538 [PubMed - indexed for MEDLINE]
15:
Related Articles, LinksKoh WJ, Stelzer KJ, Peterson LM, Staker BL, Ward WF, Russell KJ, Griffin TW.

Effect of pentoxifylline on radiation-induced lung and skin toxicity in rats.
Int J Radiat Oncol Biol Phys. 1995 Jan 1;31(1):71-7.
PMID: 7995770 [PubMed - indexed for MEDLINE]
16:
Related Articles, LinksRemiszewski P, Roszkowski K.

[Mechanisms of radiation to the lung. Pentoxifylline--a new radioprotective drug?]
Pneumonol Alergol Pol. 1995;63(5-6):349-54. Review. Polish. No abstract available.
PMID: 7581073 [PubMed - indexed for MEDLINE]
17:
Related Articles, LinksVernimmen F, Verheye-Dua F, du Toit H, Böhm L.

Effect of pentoxifylline on radiation damage and tumor growth.
Strahlenther Onkol. 1994 Oct;170(10):595-601.
PMID: 7974171 [PubMed - indexed for MEDLINE]
18:
Related Articles, LinksHoness DJ, Dennis IF, Bleehen NM.

Pentoxifylline: its pharmacokinetics and ability to improve tumour perfusion and radiosensitivity in mice.
Radiother Oncol. 1993 Sep;28(3):208-18.
PMID: 8255998 [PubMed - indexed for MEDLINE]

Hope this helps--the combo is Pentoxifylline (also known as trental) and vitamin E

What has confused me is the ?radioprotective drug, as one might postulate that either it makes radiation work better or protects the lung from radiation damage. But maybe it does one via one pathway and the other via another and the net effect is to both increase effectiveness and protect the "innocent tissue"

None of this has been tested in tens of thousands over many years, so you may get the ...there is not sufficient clinical evidence...answer.

But I remember you have an inquiring mind, so information may either ease or disturb it.

Hope this info does the former

[Julie2]

Adriana,

One of our members did cyberknife for her mediastinal met and it was successful, may be you can explore about this option since it is localized to one point in lung.

Julie

[Lolly]

Adriana,

I've had axilla lymph node and skin mets for some time now and we've treated it with systemic treatmens all this time. However, a little over a year ago we decided to try radiation to the axilla and chest(hadn't had it to that side yet) and although it did shrink the tumors and abate symptoms for several months, eventually the tumors started growing again. We're back to systemic treatments but the problem now is that the scarring from the radiation has made that problamatic as there's not as much blood circulation. One of the reason's I'm now on Avastin with chemo, as Avastin, in addition to destroying the tumors blood vessel network, then causes new blood vessel growth which allows the chemo to get in and destroy the cancer.
So my advice would be to really ask questions regarding the possibility of scarring in the lung tissue, as in my experience that would be a problem down the road if the rads don't get all the tumor and you have recurrence.

<3 Lolly

[Lolly]

Adriana, I forgot to mention; I DID continue Herceptin 2 weekly during radiation, along with daily low-dose Xeloda(500 mg. 2x's daily). Onc and Rad Onc. stated it would possibly increase rad effectivness ie: synergy. I didn't experience undue skin issues, other than expected redness, some peeling, etc.

<3 Lolly

[Alaina]

Hello,

Have you checked into Radio Frequency Ablation Therapy??? I have heard that it can be done on lung tumors which are not too large. You may have to pay out of pocket but I would consider this. Please check into it. And may God bless you!!! Love, your sister in this battle, alaina

[Jackie07]

Adriana,

I found an article in <Breastcancer.org> by Dr. Jennifer Griggs - somehow I couldn't copy and paste here. If you do a search with the title "New treatments for lung mets" either on the Breastcancer.org site or Yahoo.com, you will find Dr. Griggs' answer on the subject. I think that might be what your onco and his colleagues will be discussing about.
I'll look it up through Medline also and I'll post it if I find something.

Jackie07

[Joan M]

Adriana,

I had Herceptin and radiation to my breast concurrently without a problem.

Since your lung mets have been very stable for quite some time, you may want to consider finding out whether ablation is an option, as was suggested.

Would surgery be out of the question? How big are the mets, and how many are there?

I had surgery to remove a single met in the apex of my left lung, but I'm not sure that if I had had more than one met, surgery would have been an option. My nodule was 9mm.

It's really good that you're taking the time to find out your options and getting information.

Joan

[TriciaK]

You've gotten some informative answers, Adriana. I don't have anything to add, as my lung mets did respond to navelbine and herceptin. I will be watching for your decision and treatments and success, and sending positive thoughts and prayers your way. Hugs, Tricia

[Adriana Mangus]

Lolly:

Thanks for your response.

From reading your response I'd assume that you did not have ca in your lung (s). I have a few questions if you do not mind.

Why did you have radiation to your chest?
How often did you receive radiation and how long was the radiation treatment?
How long were you NED after radiation and Herceptin?

Onc. said he will continue herceptin every three weeks.

I appreciate your response. Thank you so much.

[Adriana Mangus]

Dear Joan,

Onc said that surgery it's not a good choice for me. I guess the ca is in more than one place in the lung, but it's been stable since the recurrence in 2003. In short there is no indication that the ca has spread to other organs

It's really a hard decision for me to make alone, but one I must take no matter what...

Thanks so much for your response. I will keep you and everyone else posted.

[Adriana Mangus]

Julie,

Thanks for your response. Do you remember the member who had cyberknife? To what area of her body did she receive this treatment.

[Julie2]

Adriana,

The member who recieved CyberKnife for mediastinal node is "rentrac". You can see this in her signature.

Hope this helps.

Julie

[Adriana Mangus]

Dear Sheila:

Thank you for asking about my husband. He's still at the rehab facility, he's doing a lot better, talks a lot more, walks little more than before-with help- he's able to get in and out of the car with little help.
He goes to the bathroom with assistance also. He's alert and understands everything. He gets frustrated because he cannot communicate but doc put him on an antidepressant and it has helped him a lot.

Doc said that it will take at least a year before is able to walk again, but he will regain the use of his legs and speech.
He's seeing a neuro-biofeedback doc and also a chiropractor. Both are helping him. Husband likes both of them.

Thank you so much for responding to my email. I have not made a decision as of yet. I have a little more time......:-) Stay well.

Much love to you.

[Adriana Mangus]

Thank you Julie...

[Lolly]

Adriana, I had/have mets to the axilla nodes, supraclavicular nodes and chest wall(skin). At the time I had radiation, it was just the right axilla we were targeting as the clavicular nodes were responding to Herceptin/Xeloda and the chest lesions hadn't showed up yet.

The axilla mass was very large and uncomfortable, and my rad onc wanted to shrink it and try to prevent spread into the chest wall so he also mapped out part of my right chest area.

I had 37 tx, 7 weeks of daily tx 5 days a week. Each session took about 20 mins, but of course they were zapping the tumors from various angels, each target area being zapped for maybe 15 seconds? Wasn't really timing it.

I was on Herceptin every 2 weeks and daily Xeloda throughout this time, and continued the same after finishing rads.

I was symptom free (didn't really consider myself NED) after finishing radiation from the end of October to the end of January, when several new axilla nodes started enlarging along with the tumor we radiated(some of it is scar tissue according to the onc) and have been in constant treatment for these and other new areas since.

So, although the axilla/chest radiation didn't stop spread in these local areas, I remain NED everywhere else. That is a victory, but don't know if that can be attributed to the radiation or Herceptin/chemo. I lean towards the systemic treatment keeping me NED elsewhere, and believe the radiation didn't help me for long enough to warrant the collateral damage of scar tissue, which is now causing problems with systemic treatments not being able to penetrate tissue.

<3 Lolly

[Lolly]

Adriana, as you can see I keep adding to my comments :) I'm trying not to "advise" you one way or the other as only you can make this decision, based on your individual circumstances.

However I did want to add that I knew, going into radiation for this "localized" metastasis, that we were thinking "outside the box" as my onc put it, and that it was an unknown as to how well it would work to clear up the tumor. I felt at the time it was worth it, and want to stress that my regrets are only in hindsight. You know the old saying, hindsight is 20/20! Nodal metastasis is a difficult type of mets.


<3 Lolly