Scan Results-Questions Sara & Lesley

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3/13/2012 8:44pm
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Replies: 8

Sara and Lesley, both of you being physicians, I'd like your opinions.

The results of my scans are not what I wanted to hear, but not surprising. The nodular mass between stomach and spleen is 5.2 x 3.6, up from 4.3 x 2.9 in Jan. and 3.4 x 2.3 in Oct., 2011. Several mesenteric/lymph nodes have also increased. Slight enlarged nodule in right lung base. (these have not really scared me as I've had numerous areas and they do seem to remain approx. the same) Ironically, radiologist feels some improvement in the liver as he only identified two locations, but MRI of abdomen in Jan. stated 5 lesions from Nebraska radiologist and 6 lesions from Dr. Sato?? I have sent my info. to Dr. Nutting for review. As I stated before, my main focus is the large lesion by the stomach. I asked the doctor that called yesterday (my doctor on vacation) about the possibility of doing Ipi re-induction, as that had been approved when I was on the compassionate trial, then doing cyberknife to the lesion after the Ipi (hopefully to get the same effect as the patient of Dr. Wolchoks) and his response was "how do you feel" -  "you know you could die from doing the Ipi". I told him I'd had very little if any side effects the first time and he said that it could be different the next time. I felt he was a bit negative! Do you have to wait to feel bad before you do something? I'm frustrated/confused.... I do feel fine. Do I just sit and let things GROW??

I did ask them to re-read my PET scan that was done in Jan. as the only mention was mild uptake in my one shoulder and I've been having some rotator cuff issues. Stated- PET images were "clear of any metabolically significant activity".

Something else I wanted to mention was that my LDH on my last labs was 95, which is below normal. Any thoughts on that?

I'm abit down, not knowing what the next step should be. I see my doctor on Monday, the 19th. She is very good and does listen, but is not a melanoma specialist.

Anxiously awaiting your thoughts.

Nan

Dear Nan,

I am sorry that your scans weren't exactly what you were hoping for, however, they don't sound too bad to me, all considering....

As you may know, Gregg and I always tried to approach individual tumors with local controls, if safe, in between systemic treatments.  It sounds like a good idea to get Dr. Nutting's opinion and so get a couple other opinions as well.  Then, unfortunately, as we had to learn the hard way since there are really no data to drive these decisions right now, you have to go with your gut feeling after discussing it with your trusted doctors.  And, if you feel you need additional medical opinions, it is always important to seek those out... have you received an opinion on a local control for the tumor near your stomach (i.e. radiation vs. ablation)?

Hang in there... you'll pull a plan together soon... the hardest part for us was while we were coming up with a plan...

Let us know what additional information you get from additional opinions...

Thinking of you,

Sara - CURE OM

Sara, thank you. As always I value your opinion. I have a lot to discuss with my doctor on Monday. :)

Nan

Dear Nan,

So sorry scans not good. I can t really speak as a doctor as I retired in 2010. I can speak as a fellow OM patient. I agree with Sara about seeing if you can treat that large lesion locally. We know that cyro ablation and heat ablation cause an immune response (we dont know that it is the one we want!) So what you are saying makes good sense.

I understand and recognise what your oncologist says about ipi - my oncologist and I discussed that at the begining of ipi treatment and it is repeated to me each time I ask for maintenance.  Have you asked your oncologist if he has lost a pateint to ipi?

He doesn not want to take a way what good quality of life you have. He wants you to enjoy the time you have and does not want you to suffer. One can understand those wishes and they are good qualities.

However I also think the approach to ipi is to treat early rather than later so if you held out till you had a poor quality of life I dont see you would gain much maybe just maintain at that poor quality of life. So really the call is yours- vey hard choice.. Its very hard Would it be possilbe to see your oncologist again or another and ask them to contact Wolchok about the timing of localised treatment. I know the closest time I came to death so far was after routine ablation of 2 sub 4mm lesions in liver. It was the ablation syndrome followed by sepsis that was so scary. That was a year after ipi and I seemed to have an exagerated immune response to the ablation. So for me I would be scared to have ipi and follow with ablation but that s my expereince- if you doctor you see on Monday would she email Wolchok about it.

I often wonder at which point one lets the lesions grow. At some point one should I just dont know when that is.

Try not to be down its so miserable. As to the PET - my mets have never shown on PET CT scans not even with contrast thrown in as well.

Let us know what you decide - but I think you would feel better if it is your decision.

Lesley, thank you. You and Sara responded so quickly. I like the idea of having my doctor e-mail Dr. Wolchok. As I told Sara, I have a lot to discuss with my doctor at my appointment on Monday.

Nan

All good points, as usual, Lesley-- good luck, Nan, and let us know what you discuss with your doc on Monday... the bottom line is that, as long as you are being thorough and thoughtful (which you are) there are no right or wrong answers-- that is both the good and the bad part of this...

Thinking of you,

Sara - CURE OM

Hi Lesley, your mentioning that your PET scans did not show your mets, how were they detected?   I had my eye removed on 01/04/2012 with the tumor measuring 9.5, mixed cells, monosomy 3, with my Doctor telling me that the genetics show I am at high risk for mets, so CT and PET, both showing clear.  The only thing setup is US every 3 months by oncologist who has never had an OM patient, so am apprehensive to say the least, any information would be helpful, thank you.

Tom

In the UK pet /ct does slices greater than 1cm so if few and small lesions will be missed . CT of the liver is not good for finding metastatic ocular melanoma. MRI with diffusion weighting and contrast is thought to be the best.

Thank you, will take this information to my Oncologist next month.