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January 22, 2015 at 10:54 pm #22326
maybe you can advise me: I’m still confused with the chest CT scan results of my wife. Doctors say there are 10 neoplasms in the both lungs at different places (original surgeryly removed melanoma was on her back). CT-experts says these are definitely mets. But some oncologists say it could be sarcoidosis or smth else. I know that it’s just a minor hope for having smth different from mets. But how can we identify that? If the biopsy with the needle is the only way to check it?
Thank you all for this amzaing source of hope…January 23, 2015 at 4:36 am #66176kylezParticipant
I had 8 suspicious lesions spread across both lungs, first found Dec ’09. Previously I had 2 different melanoma primaries on my skin. My docs did a watch and wait. They would not start any treatment without confirmation of melanoma. After 4 months or so, the lesions were slightly larger but remained too small for needle biopsy. My docs arranged for a VATS (video assisted thoracic surgery) to remove a couple of lesions from one lung for biopsy. In my case, it was confirmed melanoma. This being 2010, I started high-dose IL2 shortly thereafter.
I’m not sure too much has probably changed in terms of confirming whether suspicious lesions are melanoma or not. They probably have to do it (they did in my case) before they could start any kind of systemic treatment – Yervoy, BRAF targeted therapy, anti-PD1, clinical trials, and anything else. If getting to treatment sooner would be your wife’s goal, she could push to get the biopsy or VATS to confirm (or rule out) the suspicious areas as melanoma, earlier rather than later, or when the time feels right.
Hope this helps. – KyleJanuary 23, 2015 at 7:35 pm #66177goldfidlerParticipant
Sorry to hear about your situation. A couple of points:
– After suspicion with CT, a PET scan is usually next. If PET confirms CT, then a lung biopsy is the next usual step to 100% confirm that it is melanoma and not something else.
I started in a similar way. Stage IIIc in foot and groin. NED after two surgeries in Sept 2013 but then watch and wait. There were always lesions in lungs with me but were stable and never confirmed as melanoma. In Oct 2014, lesions started to grow and new lesions appeared. CT was confirmed with PET. Two different needle lung biopsies confirmed PET and CT as melanoma.
In Nov 2014, I started on a trial of MEDI4736 (anti PDL-1 combo with Trametinib). They have 9 nodules/lesions/tumors (pick your descriptive word) of various sizes which are now being tracked and measured in my lungs. My 8-week scan revealed that the combo drugs are working. Two were significantly reduced. Five others were reduced. Two were stable No new ones have appeared. My next scan is in 2 weeks. My fingers are crossed that it is still working.
This is not the end of the world but the next step in our journeys with this evil disease. There are many new options available to us today that did not exist even 18 months ago. I feel lucky that the nodules are in soft tissue which offers more options. Stay strong and be logical with your decision-making process. One step at a time. For you:
– are you being seen at and taking advice from a Melanoma Center of Excellence?
– what is the best way to confirm melanoma or not?
– if confirmed, what is the best treatment plan to pursue?
Our thoughts are with you…
MattJanuary 23, 2015 at 10:04 pm #66178
Hi, Matt, thank you very much for detailed answer,
I’m not aware of Melanoma Center of Excellence any advice on it?
Actually we are now between 2 strategies of treatment: to wait of to continue with combo.
Doctor 1 says he is not sure about lesions. First because melanoma usually grows fast, these seems to be stable for 2 months (from your story I see that it can be stable for year);
second is that my S100 marker is ok (I know that it is not sufficient criteria for melanoma cells). Third other mets were not found (hopefully they are no). So doctor 1 says you should wait for 2 more month and repeat CT with contrast).
Actually we were lucky to enter extended access program for Braf combo (Dabr+Tram) and decided to start it couple of days ago since we don’t have other access to such treatment. Doctor 2 sad it is ok to start this treatment even if lesions are not melanoma.
Actually I’m a bit worried about combo because I suppose that it’s better to start with pembro or other immuno medicine when you don’t have fast growing tumors. And other thing is you never know when to stop combo to avoid tumor mutation in more active and aggressive type.
I think that our way of lesions type verification – is dynamic observation. I’m not sure about biopsy – if they can do it safely. Which lesions size should be for reliable needle biopsy? How traumatic and dangerous is this procedure?
So probably the plan is to continue with Combo and then switch to pembro when combo will stop working… Or earlier if someone will advise.
What other options are possible? And why is it good to deal with soft tissues?
Also if CT and PET are different? I mean if you see tumors on both – can you say if it is melanoma? One oncologist has said that PET is not reliable procedure for melanoma diagnosis.
Wish you very good results 2 weeks later!January 23, 2015 at 10:07 pm #66179
Thank yuo kylez!
I texted you personal message. I also was supprised that lung lesions grew so slow. And also what was your treatment and how effective?January 25, 2015 at 8:34 pm #66180
Mikers, you mentioned centers of excellence and I think I directed you to one. But check our list here: http://melanomainternational.org/web-resources/global-resources
Let us know how you are doing..January 26, 2015 at 10:52 pm #66181
I had a skin lesion removed in July 2006 and had no other incidence of disease until I suffered seizure in April 2013. MRI and CT at the emergency room showed (unconfirmed) melanoma metastasis to the lungs and brain. From what I have learned, melanoma metastasis occurs most often in the lungs and brain. A craniotomy (11 days post seizure) confirmed the lesion removed from my brain was melanoma. The lung lesions were then assumed to be, and treated as, additional melanoma metastasis.
Regarding CT scans versus PET… a CT will show a tumor in the lungs, but a PET can show how “active” the cells are by how fast the sugar uptake is in them. On a PET the tumors will “glow” very brightly with increased level of uptake. A PET can’t determine the type of cancer, but will be able to identify if there is activity, versus scar tissue of some sort.
My lung tumors were 1.2 cm in the left lower lobe, and 5.2 cm in the right lower lobe. I was treated with Ipilimumab (Yervoy), which kept the left lower lobe nodule at 1.2 cm for over a year. The right lower lobe nodule slowly continued to grow, and by June of 2014 was 9.4 cm. I began taking Mekinist in June 2014, and by August, the tumor in the right lobe had decreased to 5 cm. Only two months on the drug! Inhibitor medications will show near immediate response rates. With the tumor down to a reasonable size for thoracic surgery, my right lower lobe was removed in early August. Follow up CT in November showed that the lesion in the left lower lobe was down to 8mm and there is no further metastasis seen in my body. I started Pembrolizumab (Keytruda) in early October. My next follow up CT is this Thursday. I’m curious to see what that left lower lobe looks like. If your doctor feels that the combo is a good precautionary action, versus “wait and see”, you should know very quickly whether or not it is effective.
My advice to anyone who might possibly have melanoma is to MOVE on it, provided a doctor has confirmed the safety of any treatments. Untreated active melanoma will spread, and dealing with brain metastasis is a more challenging project than attacking while it has been limited to the body. I’ve had 9 rounds of gamma knife to treat 38 brain tumors. I don’t worry so much about body scan results anymore… medications and surgery have been very effective. But, I always have concerns for brain MRI results.January 27, 2015 at 7:58 pm #66182
Dear Catherine ,
thank you for the list of centers of excellence. So far I didn’t find good advice in Russian centers (where we live now) so how do you think if it is possible to have some email consultation from any doctor in Europe (USA)? The main question for me is still – when to stop BRAF therapy and try to switch to AntiPD1. Should I continue with BRAF until disease progress ot switch to immunomedicine after 2 (3,4…?) months?January 27, 2015 at 8:18 pm #66183
thank you for the story and PET/CT explanation. I’ve discussed PET with one of my doctors and he’ve said that PET is not always reliable for melanoma since it can give false positive results. I guess, you’d recommend PET anyway?
I wonder why didn’t you continue (or you did?) with Mekinist – why did you decide to stop taking it? And also why did you decide to remove lesion instead of waiting for AntiPD results? Usually surgery is not prescribed for stage IV.
And also general question – since gamma knife is very effective for brain, can it be used for other parts of the body?
Niki, wish you very good results on Thursday. Keep us informed.January 27, 2015 at 8:57 pm #66184
I think the doctors will tend to disagree. Some may say wait until disease progression (many) and others may say preempt that and start the immunotherapy. There are patients over 2 years out who have NOT had progression and are still taking the braf/mek. So I would make sure she is still responding and not having bad side effects.January 28, 2015 at 12:11 am #66185
I wouldn’t necessarily push for a PET versus the CT. I’ve only had 3 PET scans during the 2 years of treatment. Most often, my doctor orders a CT with contrast. The PET was just to give him and indication of how active the tumor cells were, to differentiate them from any possible scar tissue.
I discontinued the Mekinist, because my brain tumors continued to progress even though I was still on the medication. We opted for surgery, because the pembrolizumab was not yet FDA approved. It was the belief of my team that the large tumor in my lung was the “trouble maker” shedding tumor cells to my brain. The tumor was large and very active (white glowing ball on the PET). We wanted to prepare my body for the Keytruda (pd-1) treatment. Because the drug works by using the immune system, we wanted to reduce the size of the battle I would have to put up. Less tumor tissue means an easier job for your body to launch an attack.
The brain surgery that I had (which confirmed melanoma diagnosis) was chosen, because the tumor had so much edema that it caused the seizures. Removing it gave us the tissue to send to pathology for diagnosis, and also instantly relieved the seizures, so I was able to come off of the Decadron (steroids used to reduce brain swelling). Steroids inhibit immune function. They weaken your ability to respond to immunotherapy treatments, which was the direction we wanted to go for treatment. As you have quickly learned, it is all a puzzle of what to do first and for how long. There are no standard set answers. Each individual patient should be treated based upon their own set of issues. My team and I do nothing “usually prescribed”. I selected a very aggressive oncologist, who understands my drive to cut out anything that can be cut out. I don’t like having cancer cells in my body. One little cell can replicate and spread. That said, I’m not exactly jumping on having the left lung lobe removed juuuuuust yet. : ) It’s a tiny tumor. Now that we have FDA approval and I have begun PD-1, I’ll give it a chance before we knock on the surgeon’s door again. As of my last CT, it is the last known tumor in my body. My brain… well… that’s a whole project of it’s own!
I have only had gamma knife for the brain. I believe there are other targeted radiation modalities for the body, but from what I have read, treating the lungs is difficult, and often has risky side effects. Not that surgery wasn’t risky… but with robotics now, they recovery is much easier than traditional open chest procedures. I have three very small scars, and one that is about 5 inches long where the tumor and lung tissue were pulled through.
I hope that answered what you asked. : ) Feel free to ask further questions as they arise.January 29, 2015 at 8:25 pm #66186
Dear Niki, how was your CT?
For my case – I wonder why doctors didn’t recommend PET since it obviously shows tumors. The confusing thing is that CT-doctors say that there are obviously mets in lungs. But few doctors say it can even be sarcoidosis, not mets. So I still have a small hope even understanding this may be silly. So I decided to wait for the next CT scan to be able to compare with the first one…
I admire your lung surgery – we don’t have this option unfortunately since lesions are in many parts of both lungs
Are you in USA and getting PD-1 from insurance company?
2All: have anyone heard about gamma knife for lungs? (or maybe any other treatment except medications?)January 30, 2015 at 11:12 pm #66187
My CT went very well. Thanks. : ) The one small 8 mm lesion that was in the left lung is so small now (2-3 mm) that it went unnoticed by the radiologist on the images. The rest of my body remains clear of disease!
My brain MRI this Monday will be the bigger test of how the PD-1 is doing for me overall. My brain mess sounds like you lung mess. The lesions splatter all over the place, rather than stay as one or two growing masses.
Yes… I am in the US, and the PD-1 is covered by my insurance. They have been VERY good at covering all of my treatments. I feel very lucky.
Hopefully your next CT will show some good results. Have they done a full body CT, or just the chest?February 1, 2015 at 9:42 pm #66188
Mikers: I have another patient in Russia who could use your advice for care providers. Can you share where you go now? Were you consulting in Brussels too?February 1, 2015 at 10:23 pm #66189 Dear Niki,
glad to hear you are doing well! Hopefully Monday’s MRI will also bring good news!
We’ve done brain MRI and abdomen MRI also – nothing was found.
Only in lungs. Unfortunately they cannot be treated as easy as brain…
Dear Catherine, following your advice, I’ve contacted Bart in Brussels – he’ve sad that since we’ve started BRAF inhibitors – better to go on while no progress. Also I’ve contacted one group in Essen – they required Yevroy treatment before PD1 (which is too expensive without insurance).
You can give my contacts to the new Russian patient, I will be happy to explain details.
For my case – we decided to stop on BRAF for couple of months and to see if there will be any results. Then try to find EAP for PD1. Hopefully it will still be present in Europe.
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