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November 24, 2012 at 10:08 am #20795
I haven’t written here in a long, long time.
For those of you who don’t know me, I am a Dutch stage IIIb patient, living in beautiful Switzerland. I’ve been NED for 3 years now after participating in a double blind trial with 10 mg of ipilimumab. After 8 shots (bit more than a year into the trial), I had to end the medication due to side effects.
My last scan was in September (next is in 1.5 weeks), and I am quite sure the ipi left my body completely now. I had a cold a couple of weeks ago, which was as pre-ipi cold; and my lymphocytes were lower than ever (just at the lower range).
Since ending my trial, my energy came back, I have been training for cycling tours and cycled last year in 2 tours. One in Italy (110 km, more than 3000 height meters) and one in France 160 km and 4’000 height meters. At the moment I am training for the next year.
Last week, I felt a lump in my right groin (my original melanoma was on my left knee, a year later I had macro metastases in my left groin). Luckily I could see my dr right away, and they performed an FNA on Thursday. So now the waiting game starts again.
I hate the waiting game.
The result will take 3 – 5 working days. Why is there something like a weekend? I’m actually thinking of going to the office, so that I can do some work….
Let’s play with my 5 year old instead. So far I only told him mommy needs to have checks once every so often. I really don’t want to tell him how serious it can be.
Have a good weekend,
SabineNovember 24, 2012 at 12:59 pm #57756Catherine PooleKeymaster
So sorry to hear you are having this scare. But worst case scenario, this being melanoma spread to a node, removal would most likely take care of it. The location of this is in your favor too. Please let us know how the FNA turns out..and do have fun and keep busy over the weekend. Living in the moment is what we all have to do.November 25, 2012 at 4:32 am #57757msue5Participant
Sabine I hope your biopsy results come soon. I think the waiting is the worst part of this whole ordeal. I can handle bad news but not the part when you are waiting. Hoping for good news. I just progressed to stage 4 and had 3 Dr’s with 3 different treatment plans. I think I have a good plan now but still have to wait for 2 Radiation Oncologists opinions.
Mary SueNovember 25, 2012 at 8:16 am #57758
Thanks for the responses! You are right Catherine, it would be really easy to operate.
The only thing is that I would have to stop cycling again (at least for a couple of months)!?!
Mary Sue, you are so right. Somehow I am certain it will come back. If it’s now or in 10 years, I don’t know. And that is the part I dislike to most! Uncertainty is not my thing.
I wish you all the best with your treatment. I hope you find something you stand behind.
It must be really scary to really jump from stage 3 to 4 (I might join you later in the week).
SabineNovember 26, 2012 at 12:16 pm #57759GillyParticipant
Hi Sabine – sorry you are having to do the waiting again – we are also waiting (for the Braf test) – my hubby did get more mets – many mediastinal ones and one near his hip – I too hate the waiting – you are right to stay busy though – my hubby is off to New York today – so he doesn’t have a problem keeping busy ! Hopefully your lump turns out to be nothing serious but at least if it is an infected node they can take it out and you know what to expect. Sorry you have to stop your amazing cycling feats for a bit – but I am sure your fitness will help in your recovery ! All the best.November 27, 2012 at 2:17 am #57760Shirley ZParticipant Hi Sabine,
Its good to hear from you although not under these circumstances.
Hoping the wait goes by quickly and you will receive good news.
It sounds like you are super busy with all of your activities and a little 5 yr old.
Praying for good news.
Shirley ZNovember 27, 2012 at 9:57 am #57761
Yessss, the doctor called that the results were ok!
So I guess, it’s just enlarged due to an infection.
Next week, I will have my scan and I hope to still be NED on Wednesday next week!
Thank you all for your nice words.
SabineNovember 27, 2012 at 11:55 am #57762LinnyParticipant
That’s fantastic news! I’m so glad that the results were fine. Now you can relax.November 28, 2012 at 2:25 am #57763Shirley ZParticipant Great news Sabine!
Shirley ZDecember 2, 2012 at 6:59 am #57764
Great news Sabine. You must be over the moon. My wife is in a very similar situation as she is currently stage IIIB with a primary on her right lower trunk in March 2011 which metastasized to her right groin in October 2011. She has been on Interferon for almost a year now. Her CT scan last Thu showed that 2 of her lymph nodes in her left groin were larger than at the last scan (in Thursday`s scan they were 19 by 11 mm and 13 by 10 mm), although she can’t feel them.
Now it is a waiting game. She has the CT scan report with a recommendation to get an ultrasound and possibly a biopsy done, but she has not yet spoken to her oncologist. We have been reading up over the weekend on what direction melanoma tends to metastasize based on her primary and metastases to determine the likelihood that it has gone to the groin on the other side but nowhere else ( her CT-scan was clear otherwise) and it would seem unusual that it reappears in the other groin, but who knows?
Sydney, AustraliaDecember 2, 2012 at 8:55 am #57765
Yes, I am very happy. The lump is still there, but at the moment I do have an huge blister on my right foot (had to walk for 45 minutes on mountainbike shoes, because the chain of my bike broke).
I really wonder what my scan report will be like on Tuesday.
I agree that I also wondered of the chance of this lump being a metastases. I had my melanoma on my left knee, so very far away from the right groin. Would be a strange way of traveling for a tumor.
I hope that your wife’s lumps are also just because of an infection. I also hope she (and you) get a check quickly. I very much dislike waiting.
SabineDecember 3, 2012 at 2:08 am #57766
Thanks for your kind words. She’s spoken to her oncologist today and will have an ultrasound on Thu followed by a biopsy if needed. He says it is unlikely to be a metastasis, it’s more likely a result of the nodes in that area working overtime. So let’s hope his prediction will come out.
It is funny how much we have in common with you by the way. I am Dutch like you (my wife is Australian) and our passion is cycle touring, as well! There is an awesome Audax ride here in Australia called the Alpine Classic. If you are ever here in Australia in January, around Australia Day, try to fit in this ride. It is long and hard, but a wonderful experience if you like long-distance riding.December 3, 2012 at 2:31 pm #57767Catherine PooleKeymaster
Sounds like a great bike ride! It really helps to have something like that for stress reduction!December 5, 2012 at 7:19 pm #57768 Yes!!!! No lesions on the scan (which is a bit strange, as I still feel this lump in my groin).
On Tuesday I will have my blood tests done, and then I will be cleared for 3 more months!December 6, 2012 at 1:48 pm #57769
Great news Sabine. Sarah’s result from the ultrasound was also a relieve, the enlarged lymph nodes do not contain tumours. And Catherine, riding is indeed a fantastic way to reduce stress.
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