CUP chemo drug choices - 1259521

pbssrs
Posts:7

Hi, I wrote in awhile ago regarding my 70 yr old father diagnosed with CUP. He has/had a massive tumor in a mediastinal lymph node. We did 9 weeks of chemo Carbo/Taxol and 7 weeks of radiation. He was given a three week break before next treatment. Beginning Of second week off he was feeing good and went to a restaurant and on some car rides. He was basically in bed for all of the treatment time except for doc appts due to fatigue. He started to not feel well towards the end of the second week off. He had transfusion and because of symptoms they decided to do CT four weeks earlier than planned. Just got results and they now show cancer in one adrenal gland, lymph nodes above and below the radiation zone and multiple nodules in both lungs. The initial tumor did shrink. They are now going to try combo Alimta, Cisplatin and Avastin once every three weeks for three cycles. And they are trying to get him in a trial at U of W. Insurance will not cover one of the drugs as it is not proven for this type of treatment, it will cost $10,000 each treatment, but hoping to get insurance discount price. While his cancer is rare, is this a common/effective choice? Also is it common that the doctor has never discussed a timeline with my dad. My parents are thinking this treatment might buy them years, when in reality years is a long shot and months seem more probable. Do most doctors talk timeline? We want to fight, but shouldn't my parents be told that the end might be near? I pray this will work, but I am trying to be realistic. I am afraid they are going to be blindsided if this doesn't work. In their minds he can live years with stage 4, but this does not seem probable w/ CUP.

Thank you for any insight regarding the chemo drugs and timeline question.

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Dr West
Posts: 4735

Unfortunately, I think your assessment of the timeline is far more realistic than that of your parents, and I do believe it is a responsibility of the oncologist to offer a realistic assessment of the reasonable probabilities in terms of anticipated benefits and risks of treatments. I would say that a patient can't make an informed decision about whether to pursue a treatment vs. alternatives if he or she doesn't have a fair perspective on prognosis and how much time the treatment proposed might "buy them", especially when there is a considerable cost to the patient and their family.

That isn't to say it's rare to have people avoid this conversation: it's a difficult conversation people want to put off as long as possible, it takes significant time that busy oncologists often don't have enough of in the cancer clinic, and it may lead to a loss of business, whether because patients may well decide that further treatment truly isn't worth the cost (financial and/or side effects) or because many patients never want to have this conversation at all, even if it's the right thing to do. No oncologist wants to be called "Dr. Doom" by their patients, even if it's only for having a realistic discussion to bring them back from the magical world of rainbows and unicorns.

In terms of the regimen selected, it's fine, though very aggressive. I would be very wary that it will be exceptionally difficult for someone who found carbo/taxol and radiation to be very challenging. There is also some risk for complications such as a tracheo-esophageal fistula (a hole that connects the windpipe to esophagus) when Avastin (bevacizumab) is given any time remotely near chest radiation.

The biggest issue is that if his cancer has progressed through prior treatment and he's had a hard time up to this point, further treatment is simply not likely to be very helpful. I'm sorry to say that, but it's important to know that it may just lead to side effects and costs.

Good luck.

-Dr. West

pbssrs
Posts: 7

Thank you for your reply.

Unfortunately, this decision was made very quickly without much discussion. He did not have a treatment plan at our appt Thursday afternoon as he just received results. He also was leaving the country on vacation Sat so he had to come up with a plan very quickly. He spoke with his colleges and the second opinion doc and came up with this plan Friday. I was not on that call, but I am sure he never discussed the possible side effects and how much time we are really hoping to gain from this treatment plan. He did work very hard to make this happen before he left.

I emailed him and said that after the next scans my dad needs to be informed of the timeline and how long additional treatment might buy him. We are going to do a scan before the second dose to make sure it is working. If not, he hopes to get him into U of W trial. We will have more time to discuss this and not be so rushed. I will also be out there for a week so I am going to push him in our appt to discuss a realistic timeline with my father.

Thank you again for your help. I really appreciate it!

carrigallen
Posts: 194

I agree with Dr West, that cisplatin-based doublet chemotherapy in this setting may be difficult for him. It may be reasonable to ask about an alternative, like carboplatin.

Re: $10,000. I doubt that paying out-of-pocket for a alimta or avastin is worth the 'financial toxicity' in this setting. If your insurance truly will not pay for it, then a reasonable alternative to Alimta can be found. Also, Avastin can be omitted without significantly hurting the effectiveness of the treatment. It seems ill advised to be paying for either of those drugs out-of-pocket in this setting.
Similiarly, if a clinical trial is forcing participants to pay egregious out-of-pocket expenses, that is probably a fault in the trial design or trial budget. Sometimes, the trial budget will include an invoice item, if a particular treatment is not covered by insurance. Ultimately, it seems like it would be reasonable to explore other clinical trial options if this issue cannot be settled. Hope this helps.

pbssrs
Posts: 7

Thank you for your reply! We have run into a big wrinkle as our oncologist is in Paris right now and our insurance is not approving the Avatin and are saying that even though they have approved the ciplatin and alimta they will not approve or pay for them if they are used with the avastin. My parent's are in a panic. I am trying to get ahold of our second opinion doctor at SCCA to see what she recommends. We are also trying to get ahold of one of our oncologist partners. Dr. Creelan you said you thought that Ciplatin and Alimta without using Avastin would still be effective, correct? My parents are flipping out because they feel that their doctor made the best choice and they really want to pursue it, but this is a large number especially time three treatments! This would cost a little over $14,000 with the insurance discount for a single dose. Any thought about if switching treatment plans witch might be more effective the carob platin or the ciplatin/alimta? Are there any studies of CUP and either of these treatment plans? Thanks for any insight you can provide.

JimC
Posts: 2753

pbssrs,

That is indeed what Dr. Creelan was saying; although there are many oncologists who regularly use cisplatin (or carboplatin)-alimta (or taxol) plus avastin, the trial evidence for a significant benefit from adding avastin to the doublet is certainly not overwhelming by any means: http://cancergrace.org/lung/2013/06/14/pronounce-trial/

And as Dr. West said in one of his comments earlier in this thread, "there is also some risk for complications such as a tracheo-esophageal fistula (a hole that connects the windpipe to esophagus) when Avastin (bevacizumab) is given any time remotely near chest radiation."

There have been many patients here on GRACE who have responded well to a first line regiment without avastin (including my wife, who had an excellent response to first-line carbo/alimta).

Good luck with your father's treatment.

JimC
Forum moderator

pbssrs
Posts: 7

Thank you Jim. I watched that video and another about these combinations and they were very helpful. I feel good with just doing the two and leaving Avastin out. I guess you just keep throwing stuff at it and hopes something sticks!! Thanks for the replies!

carrigallen
Posts: 194

Another consideration is that Avastin can usually be added later, like with round 2 or 3 of the chemotherapy, after the dust settles and issues get ironed out with the insurance company.
As some mentioned earlier, either carboplatin/alimta or cisplatin / Alimta seem like reasonable options in this setting. They have a good track record, even without the Avastin.

pbssrs
Posts: 7

Hello again,
We got MRI results and my dad has two small lesions one 2mm and one 1mm that we're not there before treatment. Basically, his cancer has been running wild during our 10 weeks of treatment. He just started the cisplatin and Altima yesterday. We met with radiologist today and he is recommending whole brain radiation. My father has no symptoms from the lesions. He said he would talk to the oncologist and would probably have to delay second dose of chemo and do 10-15 radiation treatments. In my mind, I don't understand the logic of this. If this chemo cocktail is working then why delay using it to focus on two very small mets. Would they really grow that much if delayed to end of third chemo? They did not grow that much in the three and a half months from last MRI. And if this cocktail is not working, wouldn't be better to try another cocktail or just stop treatment as the benefit does not seem to be there. From what I read, whole brain radiation doesn't seem to extend survival. The mean once mets in the brain is four months which would put my dad right in line with the nine month mean of CUP patients. Does this seem like a reasonable treatment plan?
Thanks for any insight.

Dr West
Posts: 4735

First, my sense is that you are reading too much into the "stats" about CUP patients (scant enough to barely merit the term), who are a wildly heterogeneous group. I think you will get far more from seeing the pattern of what is happening in his particular case than from trying to divine expectations from statistics in a relatively small group of heterogeneous patients: CUP isn't the same entity in 20 or 40 people, but rather a smattering of different cancers that don't yield sufficient clues to know with confidence where it started. There is relatively little real evidence about actual protocols in CUP, and essentially none for second line or later therapies in CUP. This doesn't mean that it's unreasonable to try them or to conclude they won't work, but rather that it's necessary to rely on the best judgment of people directly involved, because the "evidence" isn't sufficient to make any clinical decisions.

I agree it's reasonable to put off brain radiation if the issue is just a couple of very tiny, asymptomatic brain lesions. It would be very appropriate to talk about this with his oncologist.

Finally, as your question implied, if there is clear progression on this second, powerful regimen, I think it would be extremely unlikely that the third line regimen would be far more effective, and it would be fair to question the value of additional treatments.

Good luck.

-Dr. West

pbssrs
Posts: 7

Thank you for your reply Dr. West. I know I sound very negative. I had great hope for the first round of treatment and then having to watch him be in bed for ten week and having it progress in such a big way was a huge blow. Our oncologist is back in town Monday and I plan to discuss with him if agrees with the radiologist's, who I really like, treatment plan. My dad is feeling better than he has in months and I am just worried doctors will just want to keep trying things even though they don't have a proven track and we will end up in the same boat, but he will be way weaker and then not have time to enjoy his life. I know there is no track for CUP so that makes it more challenging. I just want to make sure he is not wasting the time he has pursuing treatment that most likely will have minimal effect on his overall survival. Thank you again for everyone's replies.

Dr West
Posts: 4735

I completely understand and think you are wise to ask these questions. There is a difference between being negative and being realistic, especially since there are potentially negative consequences for doing treatments that may take a toll on him but have limited prospects of helping.

Good luck.

-Dr. West