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Viewing 15 posts - 1 through 15 (of 112 total)
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  • in reply to: 5 years Stage 4 #68593
    erinmay22
    Participant

    Thanks Everyone!

    in reply to: Doing my best to change survivor statistics #68614
    erinmay22
    Participant

    Wow – so great to hear! can’t believe you’ve done 6 years of Zelboarf! I didn’t last 4 months! :) Here’s to continued success with it!

    Erin

    in reply to: Last dose of Keytruda (been on trial since Jan 2013) #67145
    erinmay22
    Participant

    Thanks Guys! Hope you’re doing ok! I know I’ve been totally MIA! I think 3 of the last 4 weeks I have been some place! (Acapulco, LA, Mexico City!). This gal is exhausted! haha.

    Erin

    in reply to: New Melanoma Book! Finally out! #66943
    erinmay22
    Participant

    Excellent! Looking forward to reading it! Will order a copy.

    Erin

    in reply to: now stage iv #64654
    erinmay22
    Participant

    So sorry to hear about the advancement to stage 4… As Catherine mentioned, good to know if you’re BRAF +. I was. In May 2012 I had a tumor show up in my small intestine also. They did zelboraf first to see if we could shrink it. It did start to shrink, but then started to grow again. I had it surgically removed in Oct 2012. I did have some lymph nodes that showed up around it so the week before surgery I started Ipi.

    It might not be a bad idea to get something started vs. waiting for PD1. There is some talk about the 2 together as a great 1-2 punch since they work just a little differently. Best of luck. There are some great resources here…

    Erin

    in reply to: Merck 3475 side effects #64405
    erinmay22
    Participant

    Ok this is a long one! Sorry… but copied below the side effects listed on the trial paperwork for the MK3475. I’ve been on the trial since Jan 2013. I think my biggest complaint is fatigue…

    Thanks,

    Erin

    Likely:

    – Feeling tired, lack of energy

    – Cough

    – Rash

    – Itching of the skin

    – Frequent or excessive bowel movements

    – Pain in joints

    – Nausea

    Less Likely:

    – Pain in abdomen

    – Headache

    – Pain in a muscle or group of muscles

    – Abnormal laboratory results of liver test by blood that occasionally indicates liver failure, manifesting as yellowing of the skin or whites of the eyes, fatigue, or leg swelling

    – Weakness

    – Constipation

    – Swelling of the lower limbs due to a build-up of fuilds

    – Shortness of breath

    – Loss of appetite

    – Decreased release of thyroid hormone that may manifest as feeling tired, weight gain, feeling cold easily, or bowel movements occurring less often than usual

    – Feeling cold

    – Loss of skin color

    – Vomiting

    – Momentary feeling of whole body warmth possibly accompanied by sweating

    – Night sweats

    – Decrease in red blood cells that may results in feeling tired or short of breath

    – Dizziness

    – Weight loss

    – Pain in the back, arms, or legs

    – Decreased platelets in the blood that may results in bruising or bleeding easily

    – Dry eyes

    – Dry mouth

    – Feeling of pain, pins, and needles, or burning, usually in the fingers or toes

    – Red rash

    – Swelling of the legs

    – Pain or uncomfortable feeling in the belly

    – Sweating excessively

    – Flu or flu-like illness which may include fever, chills, body aches, and feeling tired

    – Change in how you see or change in your eye(s) function

    – Increased release of thyroid hormone which may manifest as anxiety, irritability, or trouble sleeping, weakness, trembling, sweating, feeling uncomfortable in warm weather, fast or uneven heartbeats, feeling tired, weight loss, and frequent or excessive bowel movements.

    Rare but serious:

    – Fever

    – Dehydration

    – Loss of kidney function which may result in swelling of the legs and possibly needing dialysis

    – Decreased white blood cells, red blood cells, and/or platelets which may manifest with fever, feeling cold, infections

    – Increased release of thyroid hormone which may manifest as anxiety, irritability, or trouble sleeping, weakness, trembling, sweating, feeling uncomfortable in warm weather, fast or uneven heartbeats, feeling tired, weight loss, and frequent or excessive bowel movements.

    – Infection throughout the body by a fungus that may manifest as fever, feeling tired, feeling cold, and not responding to most antibiotics

    – Inflammation of the lining around the heart which may manifest as the frequent or excessive watery bowel movements

    – Inflammation of the muscles that may manifest as weakness or pain in the muscles

    – Inflammation of the kidneys causing them not to work as well, which may manifest as swelling of the legs and possibly needing dialysis

    – Inflammation of the pituitary gland, which may manifest as headache, nausea, a sensation of the room spinning around you, changes in behaviour, double vision, or weakness

    – Inflammation of the lungs, manifesting as shortness of breath, and may lead to death

    – Inflammation of the pancreas that may manifest as severe upper abdominal pain that may move to the back, nausea and vomiting that is worsened with eating.

    – Inflammation of the livery that may manifest as yellowing of the skin and whites of the eyes, fever, and belly pain.

    in reply to: Expanded Access Program for MK-3475 Opens TODAY! #63789
    erinmay22
    Participant

    Yes this is great news to hear! Hopefully one step closer to approval but I know there are lots of folks that would like a chance to try this! I get my next scans March 17th and results and dose #21 on March 20th. So far tumors left have shrunk or remained stable with nothing new! and very few side effects…

    Erin

    in reply to: PD1 accrual update/ EAP #63587
    erinmay22
    Participant

    This would be great news! So many folks that would like the chance to try this drug…

    Erin

    in reply to: Happy New Year to all! #63285
    erinmay22
    Participant

    Hey Catherine – Happy New Year to you also! I had my 3 month scans again on Dec 27th and treatment. Scans came back with good results. Nothing new and stable tumors in the lymph nodes. There hasn’t been much change in size over the last few scans – so I wonder if they maybe aren’t that active? But again, good news is nothing new and stable!

    I put together a short video again showing the good of 2013! Just a reminder to myself that even though I was in every 3 weeks for treatment, I was still pretty blessed over the year!

    Hope you and your family are doing well!

    http://youtu.be/-imvXV1MirA

    in reply to: PDL @ MSKCC #63051
    erinmay22
    Participant

    Hi Martha –

    Yeah, my biggest question/complaint about going to the ITC was ‘who’s my doctor?’. I had Dr Dickson for 2 years and then all of a sudden was down in the ITC and seeing a different doctor every visit. Dr Segal was the one who signed me up on the trial. I was totally excited when they kicked me back to Dr D. I appreciate the consistency of care. Although Dr R was growing on me! I didn’t really ask him too many questions. I think at the time when I started the pd1 trial I was a little beat down after failing 2 treatments and a major surgery.

    Safe travels! I do feel pretty lucky to pretty much have sloan in my backyard! I am in Jersey City so it’s a quick train ride to WTC and then the E right up to 53rd/Lex. Good luck on Monday! Hope the weather cooperates for you!

    Erin

    in reply to: PDL @ MSKCC #63049
    erinmay22
    Participant

    Martha –

    So glad to hear the PDL trial is working well for you so far! I’ve been at MSKCC for almost 3 years now. Did Zelboraf, then Ipi, and Jan of this year started the Merck anti-PD1 trial. I know Dr S and R. A few months ago they pushed me back to my original med onc – Dr Dickson. Mainly because there are SOOO many patients in trial in the ITC and luckily I’ve had good results with minimal side effects. So no need right now to be followed by the trial investigators.

    I’ll be at Sloan on 12/5 for my 3 week treatment! It’s pretty amazing when you sit there and see all the patients that go thru there…

    All the best!

    Erin

    in reply to: Conference Tomorrow: Society for Melanoma Research #63005
    erinmay22
    Participant

    Shirley – I’ve been doing well! Hope you are doing well also!! Scans end of Sept continue to show shrinkage! So all good news. Started the Merck PD1 trial Jan of this year.

    Catherine – thanks for the info!

    Erin

    in reply to: Conference Tomorrow: Society for Melanoma Research #63002
    erinmay22
    Participant

    Excited to hear what they may be presenting! Just had dose #15 on Thursday! Next set of scans will be Dec 27th! eek!

    Hope all is well!

    Thanks for the updates!

    Erin

    in reply to: Merck PD1 #13 and 36 week scans #62685
    erinmay22
    Participant

    Ok I have some friends that see him. He’s a great doctor! :) I’ve been going to Sloan almost 3 years now! Yikes…

    in reply to: Merck PD1 #13 and 36 week scans #62683
    erinmay22
    Participant

    Thanks Everyone!

    Brian – yes, it does sound like we have similar stories. They removed 1 lymph node with my small bowel resection, but there were several they couldn’t get to. Guess they were surrounding the main artery to my small intestine and trying to remove it meant risk of destroying blood flow to the small bowel. Here’s hoping it works for you!

    Ursula – you’re a patient at sloan also? Who’s your doctor? I was down on the 4th floor, but given my results so far and the fact that they’ve added SO many patients to the trials I’ve been moved back to my doctor on the 5th floor. Doesn’t mean the wait times are any less! lol :)

    Here’s hoping the BMS drug does the same for you!

    Have a great weekend!

    Erin

Viewing 15 posts - 1 through 15 (of 112 total)