4th line of treatment

[kollerjones]

I was wondering if anyone out there was aware of a 4th line of treatment for non-seminoma. My husband had 4 rounds of BEP following his oriechtomy four years ago, followed by 4 more rounds of TIP therapy when the cancer returned 6 weeks later. Then an RPLND and bypass (tumors had grown up his aorta into his heart). He was diagnosed with a parkinsonism about six months later and had a lung collapse about 6 months after that due to a blown bleb. He was in remission for about 2 years when the cancer returned a third time. He had a tandem HDC stem cell transplant last Jan - second one in March. He had more lung surgery in April to remove an enlarging cyst and more tumor which pathology showed to be teratoma. This past August they suspected the cancer was coming back (tumor growing) but his numbers were normal. Opted for surveillance and in October tumors had not changed significantly enough to warrant further treatment. However - two weeks ago blood tests showed both AFP and BCHG are now elevated. We are going to the Cleveland Clinic today for pre-op testing, more blood work, scans, etc. A PET scan was recommended but denied by my husband's insurance company. They are planning on more lung surgery Friday to remove some tumors to biopsy.

My question is - what next? He is obviously considered refractory to chemo. I am afraid his other conditions - the parkinson's, emphysema, and blood disorder (he has been taking blood thinners for years) eliminate him from clinical trials. What's left? Cleveland Clinic can't even answer that right now. Want to wait for the biopsy.

Has anyone else been this far? My husand was stage IIIC when first diagnosed.

Thanks.

[Scott]

I took this one to the TC-NET mailing list for input. Doug Bank suggests making sure you are seeing Dr. Raghavan and that the Clinic work with your insurance company on the PET scan. He says, "If the scan is done and it sees just an isolated hot spot, then surgery might still be an alternative. Otherwise, there is no such thing as fourth line salvage chemo for TC. It is creative medicine at that point."

Another friend and fellow survivor offers that you would do well to consult with Sloan, and that you really need to push for the PET scan, even if your insurance company is being difficult.

[emilyalex]

Insurance

Hi there. What reason did the insurance list for denying the PET scan? May I ask who your insurer is? I work as a Benefits Specialist for corporate employer benefit plans and I would like to offer to do some research on this for you to try and find a way to get the insurance company to relent. I know some companies automatically deny things such as PET scans, stem cell transplants, etc., as experimental or investigational, but the tide is shifting somewhat. A lot of the big insurers like BCBS and Aetna actually cover stem cell/bone marrow for certain types of cancers (testicular cancer was specifically mentioned by one) and they issue bulletins about the coverage. For example, the insurer I work with on a daily basis is Aetna and they issue what they call Clinical Policy Bulletins that specify where they stand on certain treatments and protocols. The Aetna CPBs are actually listed publicly on their website. I could try to track one of these down for your particular insurer if you can tell me who your coverage is with. I also have a contact at Aetna who is kind enough to answer my general questions (I don't tell her they are personal questions for me, but she'd answer them even if she knew!).

Have you been advised to file an appeal with the insurer? Sometimes appeal determinations can take a bit of time, but it wouldn't be a bad idea to start the process and try that route. If I can offer any benefits related assistance to you or anyone else, let me know! I answer these questions and work through employee claim issues every day, so I'll help in any way I can.

Emily

[rlhawk]

I had two PET scans and my insurance company denied them both times, but reversed their decision on appeal. The second one was urgently needed to determine my course of treatment, so I paid for it myself ($2,000), then got reimbursed. I highly recommend getting a PET scan; it can provide lots of useful information.

[kollerjones]

Wow! Thanks, guys! His insurance company is United Healthcare. He has retained his benefits from his previous employer through COBRA. I am not exactly sure, but I think the reason the surgeon's office said they denied the PET scan was that it was not typically used on testicular cancer at this stage. This is second hand info through my husband as he took the phone call when I was at work. We visited the surgeon yesterday and I forgot to ask him about the PET directly. (We had already been there several hours with our 3 year old and I had a migraine - I have the flu or something. I'll call the office back this morning and offer to pay for it til they work it out. What the hell - that's what credit cards are for, right?) His "team" of oncologists have decided it best to go in after as much tumor on the left lung as possible. This is a third lung surgery so he said they cannot take out much. They did his right side last time. What they take out will be biopsied and treatment plan determined from there. The surgeon did mention the oncologist my husband had visited just briefly after the transplants in Jan/Mar- a Dr. Gilleland - had discussed potentially doing a bone marrow transplant afterwards. I am not sure whether the surgeon meant repeating the stem cell treatment or doing an actual bone marrow transplant - similar in concept, I know - but surgeon could not clarify either. His job, he said, is both exploratory and diagnostic at this point. To see exactly what is going on in there. I read my husband's chart and the last scan did show multiple new growths in addition to one or two existing tumors increasing in size. The radiology team's opinion at the time (2weeks ago) was that the appearance seemed more consistent with benzene exposure (cysts) than germ cell tumor. He did not have blood tests completed at that time. I have a hard time believing that all of a sudden he's developing cysts from exposure to benzene more than 4 years ago (last he worked as mechanic). Why now and not earlier in the game....? Anyways the markers are up now. I did ask my husband about getting a second opinion at Sloan Kettering once the surgery is done in regards to further treatment. He is so down now that he's not interested. I'll have to bring it up again later. Thanks, again, guys. You have given some solid advice to follow up on.

[kollerjones]

I did a little more research this morning regarding the PET and Dr. Raghaven. The surgeon's (Dr. Murthy's) office seemed to indicate that the team agreed the surgery was his best option regardless of the PET. Meaning they may have decided not to pursue it. The woman I spoke to did not have a request for the scan on file so it likely came from his local oncologist in Pittsburgh. In hindsight, it was the Pittsburgh office my husband had talked to - not the Clinic - regarding the scan. Murthy would be willing to have a one on one with the insurance company to fight for a PET but does not think it will affect his position in doing the surgery. He can only take out so much lung. Kinda sounds like knowing how much there is may not effect treatment at all... I'm going to call the Pitts. oncologist anyway to see what their position is. No one is willing to offer a real treatment plan until biopsy is complete. Doesn't sound good regardless...

So. The question of pursuing treatment after surgery at all.... Currently he feels pretty good. Doing another transplant will not only hospitalize him for another month but make him feel like **** for another six months. Is the 6 months gained (time in remission from last one) worth the 6 months of suffering and additional havoc it brings to the body? Is quantity better than quality? Not really looking for answers. Just voicing an inner struggle.

[Scott]

Is the 6 months gained (time in remission from last one) worth the 6 months of suffering and additional havoc it brings to the body? Is quantity better than quality? Not really looking for answers. Just voicing an inner struggle.

That is one of the most difficult decisions I've watched others make. There's equal strength in choosing to keep up the fight and in choosing to make the most of the time that is given to us.

[danebert]

Dr. Einhorn is now starting to use avastin. Also, paclitaxel (P) plus gemcitabine have actually cured a portion of people who failed high dose chemotherapy. Below is the abstract presented by Dr. Einhorn at the ASCO meeting this year. Other combos including Oxaliplatin have had good results as well. I know Norris Cancer Center in Cali. is trying a new three drug combo using all of the above mentioned drugs. Also, oral etoposide should be looked into. It may keep the disease stable which would give a window of opertunity to try something new or experimental.


Abstract No: 4588
Citation: Journal of Clinical Oncology, 2006 ASCO Annual Meeting Proceedings Part I. Vol 24, No. 18S (June 20 Supplement), 2006: 4588
Author(s): D. A. Lewis, M. J. Brames, L. H. Einhorn
Abstract: Background: A previously published ECOG study of paclitaxel (P) plus gemcitabine (G) in refractory germ cell tumors achieved a 21% response rate (6 of 28 pts.) (JCO 20:1859, 2002). Two patients are continuously NED for 4+ years. Neither had prior HDCT. High dose salvage chemotherapy with carboplatin + etoposide and peripheral blood stem cell transplant has curative potential. Subsequent chemotherapy after progression following HDCT has only rarely achieved durable remission. We have retrospectively reviewed pts. treated at Indiana University with P + G after failure to cure with initial cisplatin combination chemotherapy and salvage HDCT (± other salvage regimens). Methods: 184 patients received salvage HDCT from February 1996 to December 2004. After further progression, 33 pts. were treated with P 100 mg/M2 over 1 hour and G 1000 mg/M2 over 30 minutes days 1, 8, and 15 every 4 weeks for a maximum of 6 courses. Pts. were ineligible if they received prior P or G. 26 pts. received P + G as 3rd line, 6 as 4th line and 1 as 5th line chemotherapy. Results: Toxicity was primarily myelosuppression and neuropathy, as previously described with P + G (JCO 20:1859, 2002). There was no treatment related mortality. 10 of 33 pts. achieved objective response including 4 partial (2 to 6 months duration) and 6 complete responses (C.R.). 4 of the 6 C.R.s are continuously NED with P + G alone at 14+, 34+, 44+, and 45+ months from start of P + G. One additional C.R. is currently NED 54+ months after P + G, with 2 subsequent resections of carcinoma. Conclusions: Long-term disease free survival and potential cure is possible with P + G in this patient population after progression following HDCT

[Hopeful]

I hope you're doing ok with all this coming at you. I know the feeling and it's so hard when you feel like you're running out of options. But everyone's cancer journey is different

Depending on the type of cancer, IU usually will recommend Gemzar/Taxol. Also, ANY chemo your husband takes now, INSIST on Avastin. Dr. Einhorn has just started a study but other TC people have taken it before the study and it does work.

If gemzar/Taxol doesn't work, then it's usually VP-16 which is a mild chemo.
if that doesn't work, then they usually recommend clinical trials unless they have some other study going on.
There is another drug out there, called Oxaliplatnin, that has had limited success for people who are chemo refractory.

Also, check out Cyberknife. Insurance may or may not cover it but can definately help getting your husband towards remission. It's a direct beam of radiation at the tumor only without affecting the other healthy cells. It's very cutting edge technology and the side effect are minimal.

Here's where you go off the 'standard' TC trail after HDC failure. You need to do research to find stuff. Go to www.clinicaltrials.gov and www.pubmed.gov. You have do some searching but it will give your information on durgs being tested or currently using.

Ok, that's my little diatribe of information. My heart goes out to your and your family while going through this.

If you need anything, please let me know. My husband was going through the same thing too. And we pursued all avenues, including althernative therapies and non standard TC treatment. Our motto was you never knew what the cure would be to put Kevin in remission. Until the very end, he never gave up and he passed away on his own terms in April.

here's a list of what Kevin did after his HDC failure.
* HDC failure 5/16/05.
* Gemzar/Taxol 06/05- 09/05 (his numbers came drastically down but then the chemo failed and his numbers went back up)
* VP-16 with Avastin 09/05-01/25/06. VP-16 is mild estopiside with the only side effect is losing hair. This was a maintenance mode for Kevin for about 5 months. His BCHG fluxuated between 30K-60K during that entire time. In January, his BHCG went to 100K. We knew about Oxaliplatnin (we researched everything) but Kevin had heard about Cyberknife and proceeded that way
*02/06 - Cyberknife on a 5 inch by 3 inch tumor in his right lung, pressing up against the venacava and upper mediastinium. BCHG 100K. Kevin felt fantastic after this, he went biking, snowboarding, exercising, etc. He was happy to be able to breathe almost regularly again. His tumor became dead and no longer had cancer.
*03/06 - After Cyberknife, his BCHG went down to 22K. He was off chemo for 3 weeks after the Cyberknife (his choice) and his cancer spread to very small spots in brain (6 tiny tumors), lungs (tiny tumors and not the original one), liver, kidney, left hip. He started round of Oxaliplatnin with Avastin. Had Cyberknife performed on the 6 tumors in his brain, which became dead tumors.

the one thing about the VP-16 with Avastin and also the Cyberknife is that Kevin was able to have a normal life again. He could enjoy the things he loved and didn't worry about the cancer all the time. I'm grateful for those periods and I'm so glad he was able to be 'normal', even right before he passed away.

Your family is in my thoughts. And please let me know if you need help with anything.
patti

[Karen]

I can't offer any advice on this, only my hopes and prayers. Take care of yourself too...you are an incredible source of strength for him now.

[Neals Sister]

Hello,

My brother Neal has just finished his 2nd round of HDC and I just thought that I would may be suggest a possiblity of using 3 or 4 HDC chemo drugs. Like they gave Neal for his first round of HDC Ifosphomide, Carboplatin, and Etoposide. He got ifosphomide toxicity, so for the 2nd round they used Cyclophosphamide 250mg/day, Carboplatin 750mg/day, and Etoposide 3000mg/day. So Neal had 4000mg/day of chemo and he is only 180 pounds.
They got this protocol from Germany. So we are not sure if all is ok but that is because Neal asked for the results not to be given until the new year.
I do not know why they only use Etoposide and carboplatin as HDC drugs in the USA because here they use all 3 or perhaps 4 depending on the issue but usually 3.
My question for you is was you're husband diagnosed with teratoma from day one when they did the surgery to remove the testicle?
Hope this kinda helped but please ak if they could perhaps my be use this method.
My brother said tonight that if this didn't work then he is going to SANOVIV in Mexico for an alternative. So may be even look into that. They do a bunch of different methods.

Warmly,
Kim

[Scott]

Mark Kantrowitz also reminded me that a gemcitabine and oxaliplatin combination ("GemOx") may be worth pursuing.

[kollerjones]

Surgery was yesterday and the largest tumor was germ cell cancer. Five of the other smaller tumors removed were teratoma. The surgeon said there is more in there he had to leave behind because he was more concerned about doing more damage to the lungs taking them out than by leaving them in. They appear to be teratoma but he can't be sure. This was his third lung surgery so they could only do so much. The germ cell tumor that was removed has been in there for about two years and was considered stable teratoma prior to growing. He had that happen with another tumor prior to the HDC.

His original diagnosis was mixed nonseminoma which contained a lot of teratoma and elements of embryonal and yolk sac. (this is by memory) Aside from the cancerous lymph nodes all of the tumors removed during his RPLND were teratoma including what had grown up the interior of his vena cava into his heart. He was stage IIIC so the tumors were everywhere - wrapped around organs, etc. Because the surgery was so extensive (inlcuded a bypass) and everything removed seemed to be teratoma, they left the tumors in his lungs. The lung tumors had responded to chemo and what didn't disappear got very, very small. These original tumors remained unchanged for almost two years. Markers returned to normal.

His HDC was the carboplatin/ etopiside regime mentioned. His second line of treatment was TIP - included the taxil and other drug mentioned. All three of his treatment lines have included multiple drugs. After the HDC, he had the same response. Markers returned to normal and all but maybe three-five tiny tumors disappeared. Given his original diagnosis and history, they were assumed to be teratoma and surveyed. What bothers me now is the multiple new tumors in both lungs that grew between October and November.

So far my husband does not seem to qualify for clinical trials based on his other illnesses - the parkinson's and blood disorder. But I will gladly check into what was referred. He lost all fine motor skills with the parkinsonism, a good bit of use in his right arm, and has some other things. He can still dress himself - but with concerted effort. (takes 15-20 minutes) He has been on blood thinners 2x a day for four years. Hence the reason he is not a good clinical trial patient.

The good news is that Cleveland Clinic is consulting with Dr. Einhorn for further treatment. I had read about Oxi.. but not the Gem.. (abbreviating). I will take your posts with me so I don't forget to compare them to what Cleveland initially suggests. I am not afraid to speak up and question their theories. Matter of fact, I think I irritate them each time I grab for his chart... lol (I can still laugh)

Most frustrating part is that after each line of treatment my husband responded so well (least at first) that he thought he was cured. Originally the stem cell doctor was going to put him on oral etopiside following the HDC as a maintenance chemo. But he did so well through the HDC and markers were normal that they didn't do it. Guess they assumed it had worked.

My husband is not a strong person. And I am afraid he will not spend the rest of his life living (however long - with or without treatment), but dying. It's a horrible enviornment to leave in day after day...

Thank you - really - to everyone who responded. I'm going to jump right back on the web and check out what you've all suggested. I am really hopeful there is something - but also feel I need to get a realistic perspective on the situation to protect/provide for my husband and my kids.

Really - thank you again. This is a great group.