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August 22, 2012 at 2:36 pm #20574
Haven’t seen much activity here and you are all in my thoughts. Please let us know how things are going.August 22, 2012 at 6:57 pm #56139 I feel almost guilty in posting that my husband is doing great. On 8/7/12 his scan showed NED!! We couldn’t believe it. Now, it’s a “what now?”. Friends and family don’t get it and seem to think things are “all better” now. Some days it almost feels that way, but we know that’s not the case. I have absolutely nothing to complain about, but now there are just different worries. He can’t go back to work…he’s lost some cognitive function and focus since his brain met and the Zelboraf still causes him to feel crummy most days. I’m starting to volunteer at our kids school again, but there’s always the knowledge that the cancer can start to grow again at any point. We still can’t plan more than a few weeks out, but it’s certainly better than the alternative and I certainly shouldn’t complain. We are taking a trip to Yellowstone in mid-September. From almost the first day of diagnosis, that’s one of the big things he’s wanted to do. So, we decided to not worry about the finances and just do it. I’m not sure how you learn to live with this…his original prognosis was 6-9 months and it’s been 19. We know he’s living on borrowed time and we are so grateful for that, but just don’t know what to do with it. Is anyone else in a similar position?August 23, 2012 at 6:54 am #56140abdormaParticipant News from our house is not too good. My husband had bloodwork, PET scan and oncologist/dermatologist appointments last Thursday and Friday at Mayo in MN. Oncologist called us on our way home to say she was adding an MRI of brain early Friday am so we were thinking that wasn’t a good sign. On Friday, we learned PET scan showed multiple tumors: several spots on both lungs, three tumors on spine, lymph nodes in neck, abdomen, chest and groin lit up. Gratefully, nothing on the brain. Previously, he was diagnosed with nodular melanoma in Feb, 2011, had WLE and SNLB in March of 2011 with mets in transit but no lymph node involvement. Had clean PET scan in April, 2011, two spots on PET scan in November, 2011. Had 1/3 of left lung removed in January 2012 and one lymph node near pulmonary aorta removed which “leaked” melanoma cells out into lymph system (there is big Latin word for it but it means melanoma cells escaped); had clean PET scan at end of February; one axilla lymph node lit up and removed in May and now this news. We have always known that this could happen, but we were hoping we would get more time before it did. So I say, go to Yellowstone, JMMM!
We are skipping Yervoy and going right to Zelboraf. Again, gratefully, he is positive for BRAF mutation. Apparently no current openings for Zelboraf/MEK combination and we can’t wait for one to open up. Starting Zelboraf tomorrow morning and thanks to this forum, feel rather prepared for some of the side effects. Telling our family and friends this news was emotionally exhausting, but we feel lucky to have so many people in our lives that care and are supportive. My husband’s parents are both still alive but elderly and we take care of their finances and watch over their medical excitements so there is some added stress in how we communicate this news to them. Again, thanks to this forum, I knew that life as we have known it was possibly coming to an end tomorrow and a new chapter starting. So Sunday night, we headed to our cabin in northern Minnesota and just hung out for a couple of days and relished these days where there were no noticable effects of having melonoma (and he was shrouded in spf fabric when in the sun).
Don’t know if I have ever mentioned that my husband is also legally blind as a result of a heritary, degenerative retina disease and has very limited vision. Consequently, I am the one looking at his skin closely and doing the internet research and communicating the information. The webinars are a great gift to the unsighted as he can
listen to the information rather than have someone read it to him.
So we are hoping that Zelboraf will be the great zapper and that we have more time together!August 23, 2012 at 11:31 am #56141
Thanks to both of you. It is a rollercoaster ride I know. Up one day, down another. But hopefully the good rides will be longer as we get more research under our belts. I am so happy our webinars have been useful and we have a good one coming up. Enjoy the cabin and Yellowstone, both sound like a wonderful place to be!August 23, 2012 at 12:14 pm #56142 Abdorma…don’t give up yet…in October, my husband could barely walk (because of his huge (5.5 cm) brain met it looked like he had a stroke), mets in his lungs, lymph nodes, gall bladder, bones, and a few others. 2 brain surgeries and 10 months of Zelboraf, he’s NED for now.
One suggestion….start a website to keep everyone informed of what’s going on…it’s so much easier and less stressful. We use caringbridge. It’s free and user friendly and saves us hours and hours of phone calls and emails. Especially convenient when things aren’t going well and you’re emotionally and physically drained and don’t have the energy to talk to anyone.August 23, 2012 at 1:45 pm #56143AnonymousGuest
Rachel is not doing well. Her cancer is progressing rapidly now, especially in the lungs, which is causing great difficulty breathing. She has strength but the spasms in her lungs allows for only the basics in movements before she’s out of breath. We are back in the hospital for a last chance accelerated dose (read big increase) of a previous Cisplatin based chemo to see if it can help roll back the lung tumors. That may buy time to try, yet again, to get into a clinical trial. She was excluded twice at the last minute due to a couple of tiny brain mets that showed up on the very last scans as part of the screening processes.
She’s everything negative (Braf, C-kit, ….). IPI did nothing. Chemo only slowed things and provided some palliative relief. The cancers progression has been relentless since she went metastatic last December.
I find it hard to believe that just 3 weeks ago, we were down at one of my brother-in-law’s vacation home in NC, towing Rachel around on an inner tube from the back of a boat on a nice lake. She was bouncing around, splashing, swimming and having a great time. Now she has to use her Mother’s stair lift to get up & down the stairs.
I’m actually finding some peace and acceptance with what appears will be her death in the next couple of months. Though I’m also burning out from some of the direct physical care necessary. This disease sucks.
Despite the fact that I’ll have an abundance of family help with her direct care (Rachel is one of 13 children) it’s obvious to me that we will need professional help as well when she gets home. So far we’ve been side stepping the hospice question. Rachel’s just not there yet, or maybe she’s afraid to bring it up, but to me and others it’s obvious now, if anything, to start the process and have them come in and give an in-home evaluation. And then there is the subject of “arrangements”.
Any advice on how to bring up the subject would be greatly appreciated. Maybe I just need to be direct but gentle and say I need the help now so that I can be unburdened with her physical needs and pay more attention to her emotional needs
BTW, I’m so glad that many of your partners are doing well. That’s such a blessing to be tremendously thankful to God for.
JeffAugust 23, 2012 at 10:35 pm #56144
When my best friend was dying from ovarian cancer (my first advocacy effort) she called all those close to her into her room and said, i’m doing my arrangments so I can have what I want. Then, let’s put them away until we need them. She was a gutsy woman who was able to talk the Dept of Defense into major funding of ov. cancer. But I think everyone needs a will and their desires known since we never know what may strike us down. So I would approach as a team possibly, with her closest sibling, and suggest that this gets done, and maybe prepare yours as well, so she doesn’t feel so alone. Be sure to be calling upon those 13 siblings with
your needs and be very assertive to keep yourself sane. Your kids need you and you can’t do all this alone. Please keep in touch.August 24, 2012 at 8:24 pm #56145DadZGirlParticipant Hi Everyone!
It’s so nice to get updates this way, even when it’s not great news. I have been wondering about everyone here. My Dad is doing alright for the moment, he has two small mets less than 1cm. He did develop a Seroma in the last two weeks near his groin incision, but it seems to be a small one. We have a checkup on Wed 8/29 with the surgeon. I think it’s a little different at our house because I’m the child (45 yrs old!) and he’s my Dad so I am very careful and gentle and suggestive because he’s my Dad. We often have “tough talk” the morning before a scan review to prepare ourselves – he always initiates it. I think I have learned to be a pretty good listener. Sometimes I get a little frustrated because he doesn’t do much acitivity-wise. He’s not interested in traveling or movies or getting out of the house – but I don’t think that’s new – I think he’s been that way for years I just didn’t know it because we didn’t live together. He tells me frequently how happy he is to be at our house and we reassure him we are so glad he is home with us. All in all I think things are going ok. I thank God daily for this forum and each of you.
I think right now we are on Easy Street and so I am trying to enjoy it and just relax a little.
I feel guilty saying that in a way with so many of you struggling right now, but I know we will have our turn, we all do.
Thinking of you all!
LauraAugust 25, 2012 at 1:25 am #56146abdormaParticipant
Good to hear an update from several even when the news isn’t good. I think of you all and wonder how things are going for everyone. Jeff, my heart and prayers go out to you and Rachel and hope that she is free from pain and can enjoy whatever and wherever this journey brings you. Both my husband and I are from larger families (not 13 though — yikes!) so know that sometimes there is both strength and complications in numbers. I will keep my fingers crossed that there is only strength for you guys. JMMM, thanks for the coaching. I was feeling sorry for myself that night and am much better now. I have not given up on my husband, but was just feeling like we were moving deeper into the depths of sickness and was a little discouraged. I am hopeful that Zelboraf works for him and am extremely grateful he is BRAF positive. So far, so good. Who knows, maybe we can go to Glacier (that was kind of the plan before melanoma entered the scene) this September too.
Hang in there everyone!
annAugust 27, 2012 at 7:11 am #56147
We had a big scare yesterday…mid-afternoon, my husband told me he didn’t feel right, then started talking and I realized he was trying to tell me goodbye. He thought he was about to die. I had time to call someone to take our kids and call 911. As soon as they arrived, he had a grand mal seizure (his 1st one). The got him to the hospital (not the big one with his oncologist and neurosurgeon). They did blood tests and a CT and found nothing. They sent him home on an anti-seizure med. A couple a questions…will melanoma tumors show up on a CT? He’s always had brain MRI’s. The hospital didn’t have access to his records and couldn’t compare to his old MRI’s, so could they tell there wasn’t new growth near the cyst of the old tumor? We’ll call his oncologist in the morning, but I’m really scared about it happening again. He says he’s just fine. Plus, he still wants to go on our trip to Yellowstone, but it really scares me that it could happen again and we won’t be near a hospital. Has anyone dealt with seizures before? How do you get over the fear?August 27, 2012 at 3:09 pm #56148dkmcParticipant jmmm- I was just going to log on & comment that Don too is NED & yes the fear & worry never goes & yes unless you are walking the walk people try & understand but really just can not. We are living our “new normal” the best we can. That is why I am so grateful for this forum. Seizures are scary to witness. I hope you are in contact with oncologist & brain scan will be done soon? Before trip? A reaction to medication? I would probably want to know before leaving for trip. If scan clear- maybe onco will suggest neurologist to see? Keep us posted.
Don & I (3 weeks post 3rd neck disection) in mid Sept(great time to go) took a trip to Glacier, Yellowstone & Tetons last year. Beautiful, if you love the outdoors & nature you will be blown away. I hope your trip does not get postponed. Good luck, KarenAugust 28, 2012 at 12:22 pm #56149
Wow, that did sound scary for both of you. My leaning would be to get it squared away before you leave town as to what caused the seizure and ask about the brain scans. It would be equally scary to be away from home and try to deal with something happening. I would hate for you not to get to your vacation though. Have some thorough talks with the oncologist and neuro person before you make plans..hope it works out for your both.August 29, 2012 at 6:25 pm #56150CeceliaParticipant Margaret started having major seizures last November, and they really are very scary, especially since hers usually happen in the morning before we’re fully awake. Our radiologist has told us that she will always be susceptible because of the radiation scarring in her brain. She hasn’t had another one since June when they added Kepra to the dilantin and dexamethasone she was already on. We go about our life as much as we can, although we do note hospital locations if we leave our home base. Funny how fast we normalize new realities.August 29, 2012 at 8:06 pm #56151 Thanks for the info….he’s going for a MRI on Friday. Hopefully it won’t show new growth. He’s been stable for 6 months! He’s like a zombie on the Kepra, so not sure what we’re going to do about that. Hopefully the doctor will have some ideas on Tuesday.August 29, 2012 at 8:36 pm #56152CeceliaParticipant we found that the combination of kepra with dilantin made Margaret less zombie-like, but it still took her a few days to get used to it in her system. We had an mri today, too–hoping to avoid more str, but we’ll see. Good luck with yours.
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