A treatment path chosen

Posted By
adriana cooper
5/24/2014 5:43pm
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Replies: 21

Thanks to those that have responded to our previous post and to all that have taken the time to post on this forum both recent as well as distant past as it has provided to be a valuable resource.

We met with Dr. Margolin on Tuesday only to find out that she will be leaving SCCA soon and we will be selecting a different medical oncologist. Other choices available at SCCA are also excellent melanoma specialists and we are not worried on that front.

Disclaimer :-) The amount of information provided and it's technical nature combined with my (Rob) selective hearing and lack of understanding may not be completely accurately conveyed here as to what was actually said at our meeting with the Dr. (so don't necessarily blame the Dr.)

The Dr. seemed to feel that Adriana's cancer was currently slow growing although she did seem to agree with Adriana's feeling that the most recent area on her arm was re-growing as it had not been excised beyond the biopsy. I asked about the use of additional scans in establishing growth rate and she indicated that they were not usually repeated this soon, based on cost/insurance coverage factors. Additionally she indicated that growth rate changes over time and that scans can provide a snapshot but are not necessarily a good indicator of future growth rate.

The Dr. indicated that she would be following up on the BRAF status and explained the BRAF treatments, indicating that in general they were were quite effective at around 70% response but only enjoyed about 7-9 months durability. Thus the BRAF treatment should be reserved for a time when it may be needed down the road.

Basically the current treatment choices recommended for Adriana were IL-2 and Ipi. The process, length of treatment, side effects, and statistical response rate and potential for complete response rates were explained. There was a lot of info here so if those knowledgeable here could please review our understanding. IL-2 response rate around 12% with around 6% complete response rate that tend to be very durable. Ipi response rate around 20-25%. We were unclear as to a durable response rate although understand that it hasn't been around nearly as long, but that is working quite well. Overall response between the two around 20% .

The Dr. indicated that that in general IL-2 was used first for various reasons including it's unavailability should brain mets develop and it's greater track record/documentation of first use as it is an older drug. Although I did not fully understand this approach at the time I do now after further research on my part.

If anyone here can direct me to documentation supporting the use of Ipi prior to IL-2 it would be appreciated as I did not find much.

The Dr. did seem to prefer the IL-2 first approach but indicated that Adriana can choose either and had some time to do so. We questioned if Adriana might have some time to travel to OH to visit her family prior to starting treatment. The Dr. indicated that it was an option for her and that although starting treatment was important it wasn't imperative that it be immediate.

The Dr. also explained that there was the potential for her to participate in a trial combining radiation with Ipi that she would be looking in to. She explained that the radiation would be directed to one spot and it is thought that by doing so it triggers an immune response against other cancer cells of the same type. She indicated that she did not recommend radiation to the spots in her lungs due to their location, depth and potential for damage to surrounding lung tissue. She felt that the area on her arm would be a good candidate if it's size was large enough for the trial and it's accessibility for any necessary biopsy.


Although we were glad to have the appointment, we felt like we had left without a specific plan, some confusion and difficult choices to make.

We spent the next day and a half researching the above subjects as well as throwing the future of PD-1 in the mix in order to make an educated choice (our understanding that a 40% response is currently being seen in trials?) Watching videos from medical conferences, reading medical journals, patient blogs and forums including this one was quite a task and is ongoing. I can easily see how this can consume all of one's time and look forward to the day when I can feel like I'm not thinking about it every moment and returning to a more normal life. Although I feel I have a rudimentary grasp of the information needed for the current decisions to be made I can see how many of you are so knowledgeable, we greatly appreciate your input. As with anything in life knowledge comes with experience, this is one subject I would have preferred to not have much knowledge in.

Wednesday evening Adriana received an email from the Dr. letting her know that it looked like she is eligible to participate in the trial and that she recommend that she do so.

Adriana has decided to take that treatment path with many factors coming in to play in her decision including:

A. Her concerns that she might not be strong enough for the IL-2 treatment at this time due to it's extreme nature.

B. My work commitment (involving travel away from home) during the first 2 weeks of July and the need either to not do that work which is seasonal and an important part of our income or postpone IL-2 treatments until after that point as my undivided support is as we see it as absolutely necessary for the IL-2 treatments vs a somewhat lesser support level necessary for Ipi.

C. The added bonus of the radiation.

D. Potential for PD-1 options should Ipi fail and the understanding that those options are not available until she has failed Ipi.

Although we are concerned about potentially jeopardizing future treatment with IL-2 or any other treatments she feels this is the correct avenue given her current options and circumstances.

Things seem to be moving along as she has been in contact with the co-coordinator and is in the email chain with a new primary medical oncologist, trial medical oncologist and others. She is scheduled to meet with the trial Dr. June 3 and they are going to try and schedule her for additional scans next week. Therein lies the stumbling block in that the insurance will have to agree to the scans and treatment as the trial only pays for the additional necessary blood work. Although I know the insurance would have to pay for the Ipi and it's related treatment costs I am skeptical that they will pay for the scans at this point let alone for the radiation portion given that they have previously denied her original scans as well as her over-nite post surgery hospital stay on first request, requiring jumping through additional hoops. Although I hope that the office is able to overcome these monetary obstacles for the sake of Adriana's health I fear that we are going to be revisiting this difficult decision regarding treatment options and timing.

Best regards to all. Don't forget to live your life.

Rob and Adriana  


RJoeyB - (5/24/2014 - 8:13pm)
Rob and Adrianna,
I'm new here but unfortunately not new to melanoma. I read your post and your prior posts from the week before last. I've done both IL-2 (in 2010, as part of a broader clinical trial at NIH) and ipi (in 2013). Based on my own experience, I don't think you can go wrong doing either IL-2 or ipi first, but given the choice, I think the decision and your reasoning for starting with ipi is a sound one.
High-dose IL-2 is absolutely a much more rigorous treatment regimen. A week at a time as an inpatient for each round, with 10-14 days of recovery between each round. It's rough, but the side-effects are transient, with the worst ones resolving before leaving the hospital, and the rest resolving just in time to start the next round. So it's manageable but intense, and definitely something for which you need support in the hospital and continuing at home between rounds.
Ipi wasn't nearly as intense. Four outpatient infusions that each take about an ninety minutes, with three weeks between each infusion. There is the potential for significant side-effects for which they'll monitor you closely and which can cause them to delay an infusion and/or cancel further infusions. I didn't experience any of those, my biggest issue was fatigue and some skin irritation on my torso, so I can't speak beyond them. You'll receive plenty of education on the potential side effects and what to look for – almost to the point of being reminded too many times.
Importantly, there is growing evidence that these various immunotherapies can have a cumulative effect, each playing a role in training and “amping up” the immune system. There are many trials testing various combinations of IL-2, Yervoy (ipi), anti-PD-1’s, and TIL, among other even newer options. Some are testing them offered in parallel and others are testing them sequentially. I'm not aware of any study that says sequencing IL-2 before or after ipi is more effective. And as you've found out, there is also some early evidence to suggest that combining immunotherapy with radiation can also increase effectiveness. As the radiation kills off malignant cells, the immune system, already boosted by the immunotherapy, is given additional “training” as it cleans up after the cells damaged by radiation.
Keep in mind also with immunotherapy that the results may not be immediate, to the point where things can actually look worse, soon after completing treatment, before improving. As the immune system — white blood cells — hopefully mounts a response, tumors can look larger (on CT or MRI) and brighter (on PET) with the influx of these T-cells to the site of the tumor(s). And the immune system can take several months to properly mount a response. My medical oncologist told me that he's had more than one patient tell him that even though their first post-treatment scans looked worse, they physically felt better than they had in a long time. That's not to suggest that you shouldn't start to consider further treatment options if a post-treatment scan were to come back not as you hoped, only to encourage you that all is not lost if your treatment follows that path. I firmly believe that I'm still here because of the cumulative effect of the multiple immunotherapies (and yes, radiation and surgeries, too) I've received over these past few years.
Finally, you expressed concern that this trial might jeopardize your future options with IL-2. I'm also not aware of any IL-2 therapies for which prior treatment with ipi (or much else, for that matter) would exclude you, especially since IL-2 is an approved therapy today. There are some PD-1 trials that exclude any prior immunotherapy, but that could apply to IL-2 or ipi. When I had ipi, we also looked at a trial combining ipi and an IDO inhibitor, but there was an exclusion for prior immunotherapy other than IL-2 (such as prior ipi or anti-PD-1). So IL-2 didn't keep me out, but the prior TIL cell therapy did. It's easy to get hung up on wondering if treatment A will keep you from getting treatment B later, and I agree that it should always be something to consider, but in this case, as I said, I don't think you can go wrong starting with either.
I wish you the best with your next steps and peace about the decision you've made,

Unfortunately, you may well spend considerable time fighting with your insurance company.  My insurance company has been useless even when I asked for their help.  I've had to pay for scans myself then file appeals.  Since I'm on Medicare the denied appeals are automatically reviewed by Maximus which has always found in my favor.  I'm sure your insurance situation is different than mine but I would urge you to fight and ask your doctor or his staff for help.  Once you are in a clinical trial certain laws apply to what insurance companies must cover.

You have learned a lot in a short time.  I think you have a great plan!!

Anonymous - (5/24/2014 - 9:34pm)

There are some people who think that taking IL-2 shortly after getting ipi (like within 30-60 days) will really ramp up the effectiveness of both drugs and result in many more long-term remissions. One of our members, Jim Breitfeller, has been advocating for this ipi/IL-2 combo for several years now. You can search for his name here and read some of his former posts or look up ILo-2 on his blog "Melanoma Missionary". He makes some good points about the proper timing of IL-2 after ipi. 

Along the same lines, Prometheus Labs which recently purchased the rights to IL-2 is sponsoring a number of clinical trials. One of those trials is testing whether ipi works better before or after IL-2. The study is "HD IL-2 + Ipilimumab in Patients With Metastatic Melanoma (PROCLIVITY 02)" (NCT01856023). JoshF is a member here and is in this trial. He was delighted to tell us that he is now NED and has been for several months now. There may be more info about IL-2 + Ipi coming out at the ASCO meetings next week.

I know how frustrating and stressful it can be to sort through all this information and try to make an informed decision. But remember that 3 or 4 years ago we had no effective treatments for melanoma and darned few clinical trials to offer any hope. The current situation for melanoma patients is much better!

ecc26 - (5/25/2014 - 9:36am)

The other posters have made some good points. I found myself in a similar situation about a year and a half ago trying to figure out what to do, what to do first. I went for the IL-2 as a first choice partly due to knowing that I was young and otherwise healthy and was probably best able to handle it at that point rather than trying something else and possibly being more advanced with the cancer later. I also didn't have much faith in Ipi as it was quite new and the "durable response" appeared to only be 3-5 years vs the potential for decades with IL-2. There was also some evidence that doing Ipi first made the likelyhood of some really severe side effects with IL-2 more likley. Those were my reasons for doing IL-2 first, but more information is available now and many people are choosing Ipi first. IL-2 was tough, very tough, but only while you are recieving it. It's a week in, a week home, a week in, then 8 weeks home and repeat. While you're in the hospital you feel pretty mcuh like garbage, but you recover really quickly. A few side effects (especially the peeling irritated skin) will hang on for a while, but mostly you'll go back to feeling pretty normal within 4-5 days after you leave the hospital. IL-2 worked for me, in the sense that it killed all of the tumors I had at the time, but I was not lucky enough to get a durable response and progressed within a month after my final round. It definitely is doable if you decide to go that way in the future

I had wanted to get into an Ipi/PD-1 combo trial when I progressed, but unfortunately developed brain mets and was disqualified. The trial investigator suggested that I do whole brain radiation for the mets (too many for the targeted radiation and also I had suspected leptomeningeal disease) at the same time as Ipi for the same reasons your doctor suggested the trial. I was not in a trial, and you can try talking to your doctors about doing something similar (to the arm, not her brain) at your local office to avoid the hassle of fighting with insurance over a trial. That one didn't do it for me, but there are a lot of people out there who do get very good responses. Side effects were very tolerable for me and I actually taught a 3 week summer school course at a University that started during the third week of brain radiation and had my second infusion of Ipi during the second week of class. I had some nausea, some skin irritation, and some loose bowels, along with some fatigue, but nothing all that disruptive.

Last Fall, about 6 weeks after my last Ipi dose, when it was fairly obvious I was progressing (not just tumors appearing larger, like another poster mentioned, which does happen) I wanted to join a  PD-1 trial. The trial investigator checked with my insurance prior to having me sign consent and we were told we would not be covered for any trial expenses. My husband and I spent a full month fighting with the insurance company trying to figure out what we could do so I could still participate in the trial, come to find out at the end of the month that oops- that was a miscommunication. Really, they would cover trial expenses, they just wanted to approve the trial before I started. Insurance is frustrating and the previous posters are correct when they say you may have to spend a lot of time dealing with them and also that you should get your doctor(s) involved. Check and see if all you have to do is get the information for the trial you want to them a week or 2 ahead of time. Legally, all insurance companies are supposed to cover at least some trial expenses (thank you Obamacare), but how much is covered still varies quite a bit by state and policy, and as we found out while doing our fighting (we were going to try and wait until Jan 1, when the law kicked in) lots of plans were "grandfathered in" so long as the premiums or coverage hadn't changed dramatically (thank you republicans) and our plan was one of them. So that meant that they did't actually have to comply with the law regarding trial coverage. I learned a whole lot more about insurance and health care laws than I ever cared to. Once we finally figured out that all we had to do is run it by them first, we had no problem getting approval, but by then I had 4 new brain mets and was disqualified for the trial. 

That disqualification landed me with my only option being the BRAF/MEK combo. You are correct when you say that it works well for those with the BRAF mutation with about 70% response rate and also correct that the average duration of response is 7-9 months. Side effect, happily, for me at least, have been pretty negligable if not non-existant. Unfortunately, I didn't even make it to the average as they appear to have quit on me about 5 months in. Now I'm looking at the PD-1 expanded access and just had 9 new brain mets treated with gamma knife. 

Be happy there are so many options and so many trials to choose from. I never wanted to know anything about melanoma or insurance, but it happens. Don't get discouraged if one thing doesn't work or doesn't work as well or as long as you hoped. Research is moving so fast right now and new trials and drugs with real potential are popping up all the time. Trust that there is or will be something that will work for you and take the information from doctors and your own research and make the decisions that are best for you.

Best of luck to you


ecc26 - (5/25/2014 - 9:49am)

It just occured to me that my track record is not inspiring... 

It was not my intent to scare anyone, actually I wanted to convey that with the number of therapies currently and soon to be available we as patients are much better off than we were even 2 years ago. The previously reported stats regarding survival for a stage IV patient with brain mets is less than 6 months. I've been stage 4 for a year and a half, and had brain mets for a year. I've failed a lot of therapies, but there's always something else to try and I am very greatful for that. I also know that I'm really quite lucky to have the insurance that I have even though it can be very frustrating. We're a LONG way from getting that part of things right in this country and all insurance companies are going to give you a run-around and try very hard not to pay for things, but if you keep pushing and digging and get your doctors to advocate for you and file appeals when necessary, you can get things figured out. 

BrianP - (5/25/2014 - 1:29pm)

Quite the contrary.  Your track record was very inspiring.  Thanks for sharing.

Anonymous - (5/25/2014 - 4:13pm)
I'm not convinced that IL2 is a good choice as the evidence isn't compelling. In fact, I worry it does the opposite at this stage of treatment modalities. I know there's an effort to find a use for IL2 and it is amazing in a small population (6%) but no response for the majority (94%) Most countries with socialized medicine do not use it because of the huge cost and hospitalization associated with it.

ecc26 - (5/25/2014 - 5:19pm)

If you don't think it's a good choice, then by all means don't choose it, but everyone gets to make their own decisions based on what makes sense and is right for them. For many of us IL-2 was exactly the right choice at the time and to be honest- if they'd let me, I'd do it again. It's the therapy that so far has given me the best results. 

If what you're saying is true that some countries are eliminating IL-2 altogether I find that very dissapointing. It may be expensive, but it should always be up to the patient and their doctors what the best therapy for them is, not some beurocrats who are unaffected by the situation. I was and generally still am a proponant of single payer instead of Obamacare, but I guess at least with privatized insurance I know the options are all out there to choose from. I may be limited by what the insurance company will pay for and what I'm able to cover or raise money for, but at least the option is there if I decide that's what I want. With the way Congress has been lately, I'm rather glad we didn't end up with single payer- we'd probably end up as underfunded as everything else with treatments being cut left and right because they're "too expensive".

It is not our job on this forum to tell people what is a good choice or not- that is for each individual to decide for themselves. It is our job to offer our experiences and share the knowledge gained by our experiences, even when they didn't work for us personally. I am basically 0 for 3 (or 4 if you count the year of interferon I did as a stage III), and I'm happy to share my experiences for each of my therapies or help someone understand how they work, or understand something they have read, or anything else, but I do my very best not to pass any judgment on a therapy based on what worked or didn't work for me, or what I think of it personally. 

Bubbles - (5/25/2014 - 6:26pm)

You have good reason for concern, Anon.  IL2 is a very harsh treatment with significant difficulties. Though, like POW noted, it is truly wonderful when folks, like the ones she noted respond.  However, the data is clear....ipi has about a 20% response rate...while IL2 has about 10, and anti-PD1 is ranging from 30-40% depending on the trial.  However, it is true that currently, researchers are looking at concomitant combinations of meds and/or the best sequencing of immunotherapies to make the response rates even better.  I wish you my best, Celeste

ed williams - (5/25/2014 - 7:02pm)

I found out that I had stage 4 melanoma status last July (2013), right lung two tumours and later in Sept. that I also had 3 brain mets. To make a very long story short, I had treatment for the brain using a Gama Knife. It worked great and then in Jan. I made it into a Bristol Myer Squib trial (CA209-067m ocreb #13-027) it is a double blind phase three randomized trial of Nivolumab or Ipilimumab or both drugs together. I started in early Jan. and after 12 weeks the first CT scan showed that the Melanoma tumours in my lung were shrinking. I just finished week 17 and feeling good, just a little tired. Of the 5 patients that started at the Ottawa General hospital I am the only one still on the trial. They didn't tell me the exact reasons that the others had been taken off. The PD-1 drug that I think I am getting is called Nivolumab. The study doesn't tell you which drug you are on but the phase 1 study of the drug, found that the patients getting Nivolumab show shrinkage as early as the 8th week of treatment. Ipilimumab doesn't usually show results as quickly. If you can get access to a PD-1 drug go for it. It has been a very good experience for me and the family. I wish you the best of luck with your journey. I have found that the 2013 (ASCO) videos on Immumotherapy talking about the new PD-1 drugs on youtube have been very informative. Ed

BrianP - (5/25/2014 - 9:23pm)

Just for the record the response rate you quote isn't entirely correct.  6% CR is the general consensus with up to 8% reported but up to 21% have a PR response similar to ecc26.  I know that's not great but much better than saying 94% have no response.



Data from three rcts 810 demonstrated that single-agent il-2, when given in high doses, can elicit an objective response rate of 5%–27%, with a cr in 0%–4% of patients. In addition, patients who achieved a cr in the five randomized trials also demonstrated consistent long-term response rates that ranged from 6 months to 66+ months (median: 27 months). Similarly, the non-comparative phase ii trials of high-dose single-agent il-21315 consistently reported objective response rates of 10%–33% with a cr rate ranging from 0% to 15%. Complete responders in these trials also demonstrated impressive long-term responses that ranged from 1.5 months to 148 months (median: 70 months).

I'm me, not a statistic. Praying to not be one for years yet.

adriana , IL-2, depending on which trial you look at, had up to a 23% positive response rate (complete and partial).  There was a 5-8% complete response rate of the across the board me;anopma patients.  A high LDH is a negative biomarker for success and the NRAS DNA mutation has been found to have a 47% positive rewponse rate.  All immunotherapies seem to have some negative mental side-effects, at leaston a short term bases.  This can also be a negative for them, especially Interferon and IL-2.  Initially the IL-2 is harder on most people than the Ipi, but the Ipi is more likely to have a lifetime negative effect on one than the IL-2.  For this reason I prefer to see the IL-2 used first.  You have done a good review of the status of the melanoma field, congratulations.   If they did not require the Ipi and or BRAF as a pre-requisite for the PD-1, I would recommend PD-1 as the first thing to try.  Though it too, can have longterm negative effects, it tends to be an easier treatment on one than most immunotherapies. 
Do make sure your administering Oncologist and staff has extensive experience with IL-2 and will not administer it if you did not meet the stringent criteria.  One lady that I got very close with, told me initially that she was not a good candidate for IL-2 due to heart and breathing problems.  About 6 years later, her melanoma and problems had continued advancing.  She finally tried IL-2 as a last resort.  Her melanoma status improved, but she then died shordtly from a heart attack.  I took it when I was at my strongest pooint and did not have too terrible a rough time with it.

I'm me, not a statistic. Praying to not be one for years yet.

RJoeyB - (5/26/2014 - 7:57am)
I fear this thread has veered off-topic from what was truly needed here. Adriana and Rob have made what I think is a sound, well-reasoned decision about the next step in Adriana’s treatment, one in which Rob plays a critical role, and instead the discussion has become a debate mostly on the merits of one particular treatment option. We can quote PR, CR, OR, PFS and other rates until we’re blue in the face, the truth is that there is rarely a perfect treatment decision. No one’s melanoma is the same, no one’s circumstances (family situation, insurance, caregiving) are the same, so everyone needs to make educated, well-informed choices about their treatment, so let's encourage Adriana and Rob that they have thoughtfully done just that.
Many on this forum have experience with IL-2 and/or ipi and/or other treatments. I've had both IL-2 (as a single agent), ipi, and TIL (including more IL-2), interspersed with seven surgeries and six rounds of radiation. I hope we can agree that each of us, our loved ones, and our care teams must navigate our unique paths through a maze of competing information. I've been stage IV since diagnosis, coming up on 4 years now, good stretches and bad, never NED, but still here and living life (or at least trying to). I can't attribute the fact that I'm still here to a single agent or treatment, but rather a combination, and making good (not perfect), choices along the way. Beyond the uniqueness of our disease and our circumstances, the melanoma landscape is changing so rapidly now, which creates an ever-evolving decision tree. Short of a single “magic bullet” solution that works for everyone, the fact that we can ask five different experts for their opinion and get five different plans is a good thing — we have options. As testing of genetics and tumors and micro-environments continues to advance, we’ll be able to better integrate them into the decision-making process, where we know that one treatment may be better for a particular patient than another. An agent with a 10% response rate in the general population may have a 75% response rate for patients with a specific genetic mutation, tumor marker, or other aspect of their disease, while another agent may invert those numbers, with a 75% general response rate in general, but only 10% in a specific population. I'm fond of a quote from a recent NY Times editorial that said, and this is a paraphrase, “Any 5 year survival curve is already 5 years out-of-date.” That has never been more true for melanoma than it is today.
Finally, I also think it’s becoming evident that combination therapies will continue to play a bigger role. For some, a single agent may work, and that's wonderful. As I've already stated, I'm convinced I'm here because of a combination of the agents, therapies, and treatments I've received and frankly, we’ll never know precisely how much each contributed (or didn't), and that doesn't even touch on how those therapies should be sequenced. A proper discussion of the conundrum BMS faces with the simultaneously competitive and complementary nature of its own checkpoint inhibitor programs (anti-CTLA-4/Yervoy/ipilimumab and anti-PD-1/nivolumab) is a long discussion unto itself, but it's another good problem to have. Is there an effort to “find a use for IL-2”? Yes. Is that a good or bad thing? I think it's a good thing, especially as we understand the role IL-2 can play in mediating an immune response. My intent isn't to mount a defense of a specific agent here, but the opposite approach of dismissing it out of hand as a too-costly option in the sphere of socialized medicine may take it's value as an option for some patients off the table too early in the discussion. At $120K for a single course, I believe ipi is significantly more expensive than IL-2, even including the additional costs of care associated with the latter. I expect we’ll see similar pricing for the anti-PD-1’s, which is why the ideal is to identify the most effective treatments for specific patient populations and not waste time or money if there is evidence that an agent won't work (like we already have with BRAF). I don't know the approval process for other countries or when BMS submitted requests for approval, but I think it took 18 months after the U.S. for the U.K. NICE/NHS to approve ipi, and they are now acting (or have already acted?) to remove it as a first-line therapy because of its cost vs. its benefit. Without starting another debate on healthcare and socialized medicine, absent a test or marker that demonstrates that a treatment won't work for me, I'm not particularly fond of my life being subject to someone’s cost/benefit ratio. I know there are no easy answers there, that is absolutely the patient in me speaking out.
Adriana, Rob, you are to be commended for your careful diligence and reaching a decision. I hope and pray that over time it is revealed to be a perfect choice, but for now, from someone who has experience with the options you've considered, I think you're making a good decision based on your specific disease and circumstances. As you appropriately focus in on the next steps in your treatment, I again wish you the best.

ecc26 - (5/26/2014 - 8:45am)

Thank you for your response. I fear I may have played a significant part in the departure from the subject matter without intending to. You have expressed what I intended to express in a much more eloquent manner.

RJoeyB - (5/26/2014 - 10:17am)

Thanks for replying, too. I don't want to make anyone feel badly, just hoping we can all be encouraging to each other. You've had a journey of twists and turns, too; as you noted earlier, none of us ever would have chosen to be experts, but we've learned more than we ever wanted and are sharing what we can, in the hope that our individual journeys can somehow benefit others. Best to you!

Your response is so very true.  We all need to learn all we can about everything and make a decision and go forward.

I'm me, not a statistic. Praying to not be one for years yet.

Swanee - (5/27/2014 - 2:06pm)

Hi Adriana and Rob!  I don't have anything to add, I think great advice being offered and the dialogue is so important when we're facing these difficult decisions. I wanted you to know that I am being treated at the same facility and by the same doctors.  My 4 years with Margolin have been excellent and well directed, she is at the top of her field and only presents treatments that have a strong potential for helping your situation. She has nixed some treatments when she feels there's something better out there, no doubt, she has a lot of experience and you are in good hands!  I was so sad to hear of her move too,  but she has reassured me  I can continue to stay in contact with her for continued care and advice.  If you wish to contact me, I can be reached at  lindaeirich@hotmail.com and would be happy to talk with you and share our experiences off the forum!

Best of luck and all good wishes for a successful outcome!


We would like to thank each of you that has taken the time to post. We greatly value each view expressed here. In addition to the educational information provided here, your specific situations and reasoning behind your choices are very helpful to others. Unfortunately we are off to tackle another hurdle today as apparently pre-approved with our insurance doesn't mean they are going to pay the bill. Stress we don't really need.

Rob and Adriana


Swanee - (5/28/2014 - 2:13pm)

I just had this experience too, being pre-approved for PET/CT scan.  The letter stating that they were pleased to inform me, confirming and approving my coverage for this specific procedure and then a sentence or two later stating that this approval does not guarantee that the plan will pay for these services, so confusing!  Upon further reading and discussing with provider, it merely means if for some reason they find you were without coverage or had a lapse in coverage and that procedure took place during that time, they will not pay, otherwise they are confirming you do have coverage based on your up to date paid premiums and that this specific procedure is covered under your plan. This is a new plan for myself so I'm always nervous going into a expensive test that I could possibly be financially responsible for, Yikes!  Hopefully, this is what they are communicating to you as well!


mbaelaporte - (6/12/2014 - 4:44pm)

Dear Adriana, Rob & Swanee

I'm another fan / patient of Dr. Margolin and yes Swanee about the same duration as you.

I told her I didn't think there was enough oxygen in the same town for her & Condi.

Considering all Adriana , your direction & appreciation of the calculus is sophisticated & on the vanguard of melanoma care - congratulations.

Off to Swanee's email to try for " live " contact

all the best, john

better known w/ Dr. Margolin as Pechon or pechoncito ( nowadays )