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January 29, 2015 at 7:37 am #22337
After reading on this board for quite some time I find myself in the position of asking for some advice about an upcoming decision I have to make concerning an unsuspected proposition in changing my therapy plan.
I’m a 50 year old male from The Netherlands first diagnosed in 2005. A 9mm ulcerating – I suspect nodular – melanoma tumor was removed from my left calf. Both sentinel nodes harboured a 2mm tumor each. Both superficial and deep lymph node station in left groin where dissected. In these nodes no further metastasis where detected.
In 2011 the first single in transit metastasis was discovered about 8cm from the primary tumor location.
In 2013 a single metastasis was found in the scar tissue from the 2011 surgery. A full body PET/CT scan showed 7 smaller tumors in what is believed to be the abandoned lymph vessel(s) connecting primary and sentinel nodes. Further examination of the image showed a lesion deep within the abdomen between a large blood vessel and the bladder ,22mm in size most probably a lymph node. Surgery at that time was considered too risky. Stage IIIx became stage IV. A biopsy of that lesion confirmed it was melanoma and luckily it turned out to be BRAF positive.
Systemic therapy started with TafinlarMekinist which reduced the diameter from 22mm at baseline to 14mm in about four months. Since then the tumor burden has been labeled stable. At about the median PFS for this combo therapy my oncologist suggested to switch over to Yervoy given the fact she had no real clue on how long this stable fase would last. Moreover my excellent physical fitness would be no deal breaker in regard of the more serious adverse effects associated with Yervoy. Blood results pre-, and during therapies always where and stayed within the normal range.
Apart from some major fatigue the Yervoy therapy was completed in December of 2014 without any troublesome side effects. After completion of the Yervoy treatment the 2 week scan showed growth to 23mm diameter, 4 weeks later grown to 25mm. Current size and rate of growth makes it difficult to say whether Yervoy has failed or not at this point in time. The pre Yervoy MRI scan showed no signs of brain tumors.
Given the fact that since the tumor burden hasn’t increased in number and only at a moderate rate in size over the past 16 months – even after quitting the inhibitors – the proposition is to remove the tumor in the abdomen by surgery – at least seriously investigate the feasibility – dealing with eventual problems coming from the leg tumors if and when they arise. Radiation surgery would be no option considering the delicate nature of surrounding tissues and toxicity. Some – believed to be – nodes in the immediate surroundings of this tumor are labeled suspect.
At the moment I can appreciate the rationale behind this – at least to me – unusual move. It sounds promising given the fact that a major source of potential melanoma settlers is physically and radically removed from a critical location within my body. As usual I’m fully aware there aren’t only upsides associated with this plan.
What are the downsides that have to be taken into account to come to an intelligent decision?
Many thanks in advance,
BenJanuary 29, 2015 at 10:00 am #66203
I am not a doctor, but have a somewhat similar history. (Live in UK but worked in Netherlands for 10 years). I completed Yervoy in Jan 2013. My Oncologist (Professor of experimental Oncology at Southampton) did say that occasionally tumours show a small increase in size immediately post Yervoy before shrinking. In my case it took 3 months before the CT scan showed that an aortic lymph node metastasis was no longer visible. I had Gamma Knife for 2 small brain mets between the first and second Yervoy treatments. It is now a year after completion of Yervoy and my brain mets are dealt with (on 3 months MRI repeats) and I am awaiting a further CT of torso in March (6 months after last one). Obviously your experts views are important. I did , about 9 months prior to Yervoy, have a 40 mm metastasis removed surgically from my hip (about 3mm in from skin) – followed by 6 weeks of electron radiotherapy ( targeted with the aid of a metal “slot”) . I am told this is less damaging than normal radiotherapy. If I were you I would consider another CT check 3 months post Yervoy, and asking about how “cleanly” surgery would remove the tumour, and would radiotherapy be needed. If Yervoy is thought to have failed , I believe that PD1 is being used in Europe in a few cases. I wish you success whichever way you decide to go.January 29, 2015 at 12:12 pm #66204 Hi Jbunyan,
Thanks for your input mate!
My oncologist and me are fully aware of the different response patterns associated with Yervoy. From what I’ve read response has been reported in weeks 16-24 post treatment start. I’m in week 18 now.
The major drive behind this reassessment of the surgical option is the desire to keep all the other current and upcoming systemic therapy options open for as long as possible. From what I’m told this at least seems to be the latest acknowledgement in keeping us as long and as far from the edge of the abyss as possible. A game of intelligent and pro-active switching over back and forth between therapies if possible. That’s how I visualize this strategic process and it makes sense to me.
At the moment anti PD-1 and inhibitors- perhaps enhanced by the drug holiday effect – are the obvious options after Yervoy has failed definitively.
BenJanuary 29, 2015 at 12:42 pm #66205Catherine PooleKeymaster
Surgery, if possible without serious risk, is a great option. To remove a tumor and its ability to send out seeds to start new tumors is a promising solution. As I’ve mentioned, we are having a webinar in the upcoming week with an expert surgeon and we will discuss this. The ability of the surgeon and the nursing excellence is also important to avoid any further complications such as potential infection. PS Welcome to our forum!January 29, 2015 at 1:40 pm #66206 Hi Catherine,
Apart from the risks the option as such is a great one indeed. Thanks for your input!
More worrying to me is the still untreated pathway from primary or metastasis to this specific location even after surgery. Surgery followed by an adjuvant therapy is one of the things I’m intending to ask my oncologist concerning this aspect.
Furthermore regional perfusion was briefly mentioned as a possible option to treat the remaining tumors in the upper leg region in the future. As simple and straight forward as this technique may sound in principle I’m afraid it’s a complicated procedure and the associated risks are terrifying from what I’ve read about it.
To be followed
BenJanuary 29, 2015 at 2:20 pm #66207Catherine PooleKeymaster
Intralesional therapy is a very interesting concept and I found this trial that may open soon in European area that combines that with PD1:
I think it is a better option than regional perfusion (which also will be discussed in our webinar) I hope this might be an option for you.January 29, 2015 at 3:01 pm #66208
Funny, this method was already on the “ask urgently” list
Thinking in line with the current effort of pushing back systemic therapy as far back in time as possible the only other alternative I could think of would be radiation. Be it general radiation for that area or cyber knife surgery targeting individual tumors or combining the two methods.
Just now I was informed that a PET scan is scheduled for next week.
BenJanuary 31, 2015 at 12:02 am #66209NikiParticipant
I am not medical personnel, but as Catherine mentioned, surgery to reduce a tumor’s ability to seed new metastasis is effective. My oncologist proposed the removal of my lung tumor for this very reason, and it seems to have proven a good decision. The surgeon’s technique for removal in getting margins, and bagging the tissue before removal can be critical. My surgeon used a material that he said “had the strength to hold a human body off of the ground” to bag my resected lung lobe. The purpose being to protect adjacent organs, bones… any body region… from being in contact with the resected tumor and shedding cells.
Surgery, with its side effects, its efficacy, and your general ability to recover, make the decision more challenging. Based solely upon your writing, you seem to be very intelligent and aware of what needs to be discussed with your doctors to come to the best decision for you. This is definitely a case of there being no “right’ or “wrong” answer.January 31, 2015 at 8:27 am #66210
Thanks for your input. Hadn’t thought about the level of “tidiness” myself. Will bring that up in the upcoming conversation(s).
As you mentioned a decision in this matter will be based on possible quotes on probabilities. Asking for certainties would be fooling myself.
BenFebruary 7, 2015 at 9:18 am #66211
Seems like surgery is viable option.
PETCT scan from last week showed no new lesions. Known tumors in the upper leg didn’t show any signs of activity.
Surgeon seems confident tumor in abdomen is resectable. Depending on actual situation after opening the abdomen he will try to locate and remove other lesions which are labeled suspect.
All in all I’m very happy with the idea that a potentially curative intervention is within reach.
BenMarch 2, 2015 at 9:52 am #66212
After re-evaluating the scan the surgeon has come to the conclusion that removing the tumor by laparoscopic surgery is the most sensible way to go.
The possible suspect lesions in the direct surroundings didn’t lit up on the PET/CT scan at all and are believed to be unressectable given their close proximity to delicate structures and tissues.
BenMarch 2, 2015 at 12:55 pm #66213
Good luck with surgery. Luckily for me, Yervoy so far seems to have worked (finished Jan 2014). In UK, although not yet approved for NHS use, a few people have been given PD1post “failed” Ipi. (although at double the cost of Yervoy it is not widely used). Not sure about NL? I did have some surgery (a 40mm hip tumour removed mid 2013 followed by electron radiotherapy which also, so far seems to have worked as did Gamma Knife for 2 small brain mets)
Do let us know the outcome. I remember the Dutch Insurance system well – probably better in some ways than UK.
JBMarch 2, 2015 at 2:05 pm #66214
Thanks! Congrats with the results so far on Yervoy. I’m afraid Yervoy didn’t (yet?) work for me.
If I may ask, how is the respons on Ipilimumab qualified in your case. CP, PR or SD?
Im not aware of any official policy regarding the use of anti PD-1 yet. I know of some cases where anti PD-1 was given directly after Ipi had failed. EAP’s for both Keytruda and Opdivo are in place in The Netherlands if I’m correct.
About the costs of both therapies. To my knowledge a single dose of Yervoy is about twice the cost of a single dose of anti PD-1. The usual therapy with Yervoy consists of 4 doses. From what I’ve read about it anti PD-1 therapies (still?) have an open end where it comes to dose count. Perhaps this could explain the price difference.
I totally agree with you on that. Regardless of social or financial status both British and Dutch citizens can rely on an affordable and dependable system of Healthcare. The quality of care should be on par, both worldclass.
Will keep you posted. Promised
Cheers to my British mate
BenMarch 2, 2015 at 5:06 pm #66215
Hi Ben, Goedemiddag (kline betje Nederlands!!)
My torso metastases are now undectable so my Oncologist has described me as in “Radiological complete remission ” from last CT scan. Prior to Ipi I was graded as Grade 4, M1(c). I am not sure of the other letters but will ask when I next see my Oncologist, who is the Professor of experimental Oncology at Southampton University (Originally from Hamburg). I am BRAF wild but tumours were small prior to Ipi except for the large one on the fatty part of my left hip – excised as I mentioned.
I am now on 6 months CT (Torso) and 3 months MRI (head) scans – next ones in April.
My worst “symptom” is that the UK driving people stop you driving for 2 years post brain mets regardless of no symptoms – I think we are the harshest on this in the world.
Incidentally my father is buried in the Netherlands at Niewe Dordrecht having been shot down in a Lancaster of the RAF on the way back from Berlin in 1943…
Tot ziens and good luck.(Fond memories of the Netherlands and I get a tiny AOW pension from there!)March 28, 2015 at 10:51 am #66216
Surgery was succesfull! The tumor was resected completely.
To do this the tumor – wedged between a large bloodvessel and the bladder – was approached from the bladderside to avoid hitting the bloodvessel.
To create some clearance for the surgical instrument the “dome” of the bladder had to be removed temporalily.
Unfortunately within 24 hours after surgey this wound started bleeding into both bladder and abdomen inducing fierce and very painfull convulsions.
All in all a planned stay at the hospital of 24 hours ended after 12 days.
Shit happens and every intervention comes with a risk.
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