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  • in reply to: Liver Mets #68281
    Lesli
    Participant

    Hi Catherine,

    Can you say something more about the possible benefit of remaining on Keytruda, despite tumor growth during treatment? Many thanks in advance.

    in reply to: A Special Message to the MIF Family #68091
    Lesli
    Participant

    Dear Catherine,

    Thank you for sharing your news, so that we might have a chance to reciprocate with the same generosity that you have offered all of us over years. No doubt your husband can know that he has a wonderful partner as you face this next life challenge together. Do let us know how we can help.

    Regards, Leslie

    in reply to: Shane #67691
    Lesli
    Participant

    Dear Shane’s Mother,

    Is Shane still taking Keytruda?

    I ask because infection, enlarged heart, rapid heartbeat, fever were all my symptoms that I had before going into cardiac arrest on September 3rd. I have been on Keytruda since February and combined Teflinar and Mekinkst to help with two breakaway tumors starting in August. Three weeks later I found myself in ICU with a heart that was beating 168/min and I had no blood pressure. Steroids in the ER saved my life, and that is only because a melanoma doctor was on duty over Labor Day weekend at our hospital. They were treating me like a cardiac patient, when in fact I was a melanoma patient on a dangerous cocktail. That only came to light when they asked if I wanted to be resuscitated and I (who also said I thought it was 1950 and had no idea what city I was in), said “no, I’d rather have my socks and shoes off.” They had swollen and were weeping…my father, who was in town for the radiation I was scheduled for contradicted me and said “yes, she’s a melanoma patient and trying to live” and that tipped them off.

    Keytruda is getting the rap for the trouble, best I can understand.

    I hope Shane is seeing a melanoma specialist. My own oncologist can’t do anything more for me and I am seeking a clinical trial now.

    Best wishes to Shane. He must keep fighting and eating! We are all cheering for him! Leslie

    in reply to: Faiinting, fluids,, blood transfusion and Ketruda, and Braf #67707
    Lesli
    Participant

    Hi All,

    Yes, I had been on Keytrruda since February. 3 week cycle

    Partial response, two new tumors.

    Taflinar-Mek organized for quick reduction.

    Cyber knife to one tumor organized. The other not due to high maintenance.

    Fainting ( Shane.’s description perfectly, doctors particularly interested in fluttering, which starts the fluids-heart rate-heart failure cycle.

    Radiation and all postponed until we make sure heart is stable.

    For Jeannette: same Keytruda cycle with Taflinar Mek as described am/pm added in daily. In hindsight, I would have done what Mat and others do when combining and wait a week after Keytruda to return to Taflinar Mek.

    %*%*%* These are my opinions based on how I know my body and the series of events. No Dr has confirmed they fully understand what’s going on yet.

    Catherine, I should get home on time to meet the dishwasher repairman and it will be a joyous reunion.

    “What a wonderful World!”

    in reply to: Vitiligo 2 yrs after Ipi #67599
    Lesli
    Participant

    Celeste, who posts here and who has her own informative blog of a different type, entitled “chaotically precise: Love, life, Melanoma ( I’m close–type that in and you’ll find it!) acquired vitiligo as part of a PD-1 trial and she has written about it extensively. She and Dr. Weber, her oncologist, note that it is a “good news” messenger related to long term response. I recommend reading her blog for citations.

    Leslie

    in reply to: 2 rounds of BRAF? need advise quickly #67631
    Lesli
    Participant

    Dear Shane and your family,

    I responded to the question about Braf for a second round in the post above this one. I failed to mention that I am also pursuing radiation to a large tumor in my abdomen.

    The short answer: I am trying everything in the toolkit.

    One word from experience about hospitals: when I was in the hospital for recovery from intestinal surgery following the removal of a melanoma tumor, I was treated like a surgery patient and Not a cancer patient. Upon the return of my oncologist to the scene, at the end of Memorial Day weekend, it was bedlam!

    Take care, Shane.

    Leslie

    in reply to: Starting braf/mek tomorrow #67621
    Lesli
    Participant

    Hi All,

    I am 5 days on Taflinar/Mek after a mixed response at 5 months on Keytruda. I am returning to Braf after a year break (zelboraf/Mek worked for me for 9 months from 9/13-7/14).

    Only 5 days in, I will say that the side-effects are far less intrusive with Taflinar. I was forced to keep covered and away from all light due to sun sensitivity with Zelboraf.

    As far as quick response, my story the first time around is similar to Mathew’s. Within 2-3 days, I felt back to my old self and after 4 months, I was ready to be restaged. It is too early to know currently. My only improvement this week is that I am finally able to eat 2,000 calories/day after 5 months of significant weight loss (I’m now 50 lbs underweight). I am working from home this time around due to weakness from tumor burden and a long recovery from intestinal surgery in May.

    I am grateful for what feels now like an interminable illness/treatment plan.

    Looking for the gratitude in a tough time!

    To the EODC family, continue to ask questions and refer back to this forum. There is plenty of

    Experience and questions/answers from the country’s best Melanoma patients of the country’s leading specialists. I use what I learn here and refer to it with my own oncologist to advocate for myself. Some kind of anti-anxiety treatment is very helpful. Some meditate, I take a sleep aid, and I know folks for whom an anti-depressant helps with appetite and the will to exercise/walk. Best wishes to you and your son. Leslie

    in reply to: Brain Met on Keytruda #67454
    Lesli
    Participant

    Great news that you are in good hands and your doctors did not hesitate one minute! Best wishes to you, Mat.

    in reply to: Brain Met on Keytruda #67448
    Lesli
    Participant

    Hi Mat,

    I too am sorry to learn of this sudden change in your report. For your information, I have had ongoing brain met activity–through the success of Braf, Ipi and PD1. The drugs would continue to work very successfully on my body, while not at all on my brain. 15 mets and a craniotomy, and then silence recently. The craniotomy was painless (I kid not, our skull has no feeling) and the recovery quick (but for throwing out the contents of my home while on prednisone).

    Please keep us posted.

    Leslie

    in reply to: symptoms of small bowel involvement #67444
    Lesli
    Participant

    Hi All,

    I have had two bowel lesions that caused lack of appetite, diarrhea, lack of energy, and eventually nausea. Each of the lesions then caused an intussusception and blocked my bowel, causing uncontrollable vomiting and emergency surgery. My first surgery was Feb 5 and the second May 20. I have all the same symptoms again, and will be interested to learn if I have another visible intussusception next Wed, Aug 5 when I get a CT scan.

    Bowel lesions are a challenge because they are not easily seen on a scan until they are close to causing a blockage.

    Note: a growing blockage does not necessarily mean a growing lesion. A stable lesion can cause these problems over time because the bowel is trying to “move things along,” so to say.

    The surgeries brought relief, so if you are concerned you are in this category, seeking help is well worth it.

    Leslie

    in reply to: One thing after another… #67432
    Lesli
    Participant

    Hi All,

    It is interesting that this topic has not come up since I have been reading this forum for 2 years. I agree with Mathew: I have not seen my primary since diagnosis. In fact, when I have reached out to my primary for something to help me sleep better, she was not comfortable prescribing it without consulting my Oncologist. I see my Oncologist every 3 weeks just before treatment and it is a check-up. I get blood labs, weight, bp, a report on energy levels and pain, and he checks my liver.

    I call his office with symptoms and to schedule all scans and procedures.

    Hang in there everybody. Leslie

    in reply to: Suggestions #67381
    Lesli
    Participant

    Writing in to offer my own patient knowledge/experience-I was diagnosed after substantial disease progression in September 2013. My liver was very painful due to multiple large tumors. My oncologist explained that the pain is actually caused by the stretching of the “sac” that surrounds the liver. The liver itself has very little sense of feeling. In addition to my liver, I had involvement of my brain and bone. Throughout my time on a Braf Combo, which is what you are on, I felt a painful “pinging” in my liver. I described it as someone zapping my liver with a rubber band on the inside. By the end of my time on the Braf Combo at 9 months, the liver was almost clear of disease and I was given a new status. I would definitely judge matters by how you feel. I went from not being able to walk, to back at work in days. The Combo response offered a significantly bigger window of time for subsequent treatments to take effect. I have not heard of anyone having an extremely short response time on Braf.

    Stay in touch! This is a great resource for information and inspiration. Leslie

    in reply to: 1st Keytruda treatment #67295
    Lesli
    Participant

    Hi All,

    On Keytruda related side-effects, some of you may recall I had debilitating severe neuropathy (I awoke and thought the bed was on fire), exhaustion, extreme joint inflammation, etc. I was not experiencing “mild” side effects to say the least.

    Three weeks ago I was again admitted to ER with an intestinal blockage (a melanoma tumor settles in the small intestine and sooner or later causes an intussusception. In addition to losing a foot and a half of gut (apparently we only need 4 feet to get by) I missed two weeks of Keytruda. The medicine completely washed from my system-swollen ankles and finger-gone. Joint pain-gone.

    I am now back on it a week after a two week drug holiday and NO side effects at all. The ER scan showed “stable” for 5 weeks following my 7 week scans (which showed progression).

    Hang in there everybody. This is quite a journey.

    Leslie

    in reply to: Scan results #67170
    Lesli
    Participant

    Wonderful news, Mat! Truly great news. Your current burden is certainly something that is manageable by Keytruda.

    Leslie

    in reply to: Scan results #67165
    Lesli
    Participant

    Hi All,

    regarding scan schedule:

    I had my first infusion of Keytruda at the end of February and I responded within days: a cessation of night sweats, extreme fatigue, severe neuropathy in my hands and a decrease in my appetite–the outcome of which struck me by surprise. I lost 10 pounds without noticing.

    I asked for a scan after the 3rd infusion at 7.5 weeks, as I had a great opportunity at work that I was excited to assume, but only after knowing whether I was responding.

    Unfortunately, I had new growth and old growth and did not accept the work opportunity.

    At 12 weeks and at what was supposed to be my 5th infusion, I was admitted to the ER and a CT showed I was now stable (only a….. pesky blockage required surgery).

    My point: I had growth at 7 weeks and stable at 12.

    **in this context, pesky blockage is a ridiculous understatement–I needed surgery on a 2nd intussesception in my small/large bowel and they removed 14 inches. I am trying to recover like mad so I can resume infusions. I haven’t had a grilled cheese with bacon and mayo in my life, but you do what you have to do, working to gain 20 pounds back.

    Leslie

Viewing 15 posts - 1 through 15 (of 63 total)