@daisy2018
Forum Replies Created
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- August 4, 2022 at 11:06 pm
JudyAU, thank you for you replying.
If I remember correctly you have been through a lot too, girl?!
What is the current treatment keeping nasty Mel at bay?
Yes, I can’t believe if I progression is the only response from this last two months hard work. It’s pretty unfair then. Hey, life can be unfair I suppose. I used to be a girl who doesn’t get into too much trouble. Not sure what happened here. Lol. On a bright side I m still around. It used to pretty fast demise for this disease. It’s been 2.5 years for me. Hoping for little bit longer…. -
- August 4, 2022 at 10:56 pm
Thank you Cindy for replying. Not sure about being a Pioneer. TIL has been around a long time. I m glad Keytruda worked for you. You are an example of a patient who’s immune system was kicked in a gear right away. You need to be in a research articles or something to see what kind of cool compliant genes you have. Stay around. Thinking positive is a half of the battle! -
- August 4, 2022 at 10:47 pm
Gopher38, it is nice to see you around. Yes, all this treatment leaves permanent marks with neuropathies, pain, skin changes.
Just put one foot in front of the other, literally! Lol. Not sure what you are talking for pains and discomfort but my morphine and hydromorhone help me a lot to get through my day. After this last treatment I noticed pain in my feet. I have to brace myself in the morning to get on those feet and start walking.
Its great that targeted therapy and Keytruda works even for now. It’s hard to live knowing it’s only a temporary solution and gate can get get flooded any time. It’s still living better then alternative.
I think I will do Braftovi/Mektovi plus Optivo for a bit at least to catch a breather. The TIL got me pretty hard and with two surgeries and 3 weeks hospitalization, flights back and forth 3-4 times a month. I haven’t been living.The doctor mentioned today that he has a hope for pseudo progression since my liquid tumor DNA results went down despite CAT scan results. This doctor doesn’t throw positive hopes around easy. He is very cautious usually. It was in expected and sounded little hopeful. Will see what is the trend for this Signatera tumor DNA test. I expect more results in a week.
Still looking around for a cool trial maybe close to home?! It would be easier….
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- August 3, 2022 at 2:19 pm
Thanks for your replay. Nice to see you still around. How’s your health has been?After I got Ipi/Nivo I think I stopped growing new lesions but the ones I had kept growing. The same for Opdualag or TIL. Nothing new popped up but the existing ones kept growing.
The TIL one was particularly disappointing because it was a brutal treatment with horrible rigers,chills, heart rate up to 160, temp up to 103. I was covered with 10 warm blankets and was still shaking uncomfortably. It was a tough treatment. I had to have 2 extractions surgeries for the sample. First sample looked good but fell apart and was not usable. Not talking about flying after surgeries back and forth, financial part.
I was just positive it would work. I read CAT results yesterday and I could not believe it.
Very disappointed to say at least.
Not sure what to do now. Doctor mentioned Doing Braftovi/Mektovi and either Ipi or Nivo.
I think I will try that. Not sure if it works?!
So any ideas suggestions would be appreciated. I m still in more less reasonable health to do go through little bit more.
So disappointing such a heavy duty treatments and nothing worked. -
- April 15, 2022 at 11:57 pm
What I can see with TIL it’s not readily available. You need to find an open trial. You need to travel most likely. You need to have a slot opened at the time when you need it. You need to be strong enough for the harvest surgery, for travel, for the treatment itself. You must to not have any Leptomeningial disease. LMD
Folks with Mets get brain Mets grown all the time. Melanoma doesn’t pick and chose, it lands everywhere. You never know what next scan will show. With brain Mets come strict criteria to qualify. So pretty much it’s a small window. -
- April 15, 2022 at 11:40 pm
Thanks Mark, you are always so kind to respond right away.
The targeted therapy is already in a past as well as Keytruda.
Yes, the 3 months scans look kind of promising. There were several Mets that still had grown bigger. Not sure about tumor burden. My LDH has always been pretty low whereas my bones just kept crushing on me.The question is if there were an option of TIL available would you do it or keep going on Optivo?
The criteria for TIL are pretty strict. Things can change quickly that may disqualify me later if I miss this chance. Considering if I still can qualify now.
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- March 25, 2022 at 1:02 pm
Dear thecruisemermaid,
What you did being around and take care of your dear father was a selfless act of kindness and care.
He had pretty serious comorbidities, he was not super young and yet he lived 5 more years. It’s a testament of your great support and courage.
Don’t look back as you should have done something else. Look at it as you did everything you could under circumstances you were given. Be gentle to yourself…
Daisy… -
- March 18, 2022 at 1:14 am
Hi there,
Sorry for your ordeal. I don’t have information on your particular situation. I can share my experience of dealing with it. I was diagnosed as stage 1b in 02/2020. I was told the prognosis is pretty good. Wide excision was successful. Lymph nodes were clear. I kept progressing pretty fast up to stage 4 now.Just 2 years.
Don’t get fear and anxiety control your life. Try to live and enjoy every day and hope for the best. There is not much really in our control. What you can control is how you react to what’s going on with you. Get a good melanoma specialist and stay up date on treatment options.. Best wishes. Stay strong!
Daisy… -
- March 13, 2022 at 12:31 pm
Hi there,
I wanted to add something since I m kind of in the same boat waiting and praying for immunotherapy to kick in, hopefully.
I plan to have biopsies done to two spots I have grown since last scan. The lymph node and the bone in my sternum.
I do have a history of growing sarcoidosis tissues as a response to immunotherapy which is quite rare side effect. It does look like cancer lesions on scans.
We will do genetic testing of the tumor, if it’s a tumor again. We did it in the beginning of the treatments. Timors can change their genetic profile after several treatments have been done. Maybe we will find some other treatment option.
The other reason is to see if is cancer or sarcoidosis. By doing biopsy they can see if there is a chance my body is responding to treatment. That’s my hope!
You can ask your doctor to have biopsy done to see what’s going on.
It’s unpleasant but it’s not a big surgery. They do it under local. Results are ready in couple days.
It may save time and anxiety. Knowing is a power. -
- March 12, 2022 at 11:58 am
Thank you ThinkingPositive for responding!I didn’t know there is something else besides the two medications I mentioned previously.
I need to do my research. It sounds like a serious treatment. One more heavy duty medication on a top of ipi/nivo I m getting now. Definitely not like vitamins infusion.
I m terrified of feeling worse then I m now.
Daisy… -
- March 12, 2022 at 11:44 am
Hi there,
If I may make a little joke?!
Your radiologist perhaps went to an art school before going to medical school?!
None of my PETs/CATs the radiologists mentioned the terms of ground glass.
When you goggle it this is what it says.Ground-glass nodules (GGNs) in the lung are lesions that appear hazy on computed tomography (CT), without obscuring underlying bronchial structures or pulmonary vessels. Both benign lesions including inflammation, hemorrhage, or focal interstitial fibrosis, and malignancies can present as GGNs.
Sounds like yours are not dense/solid?! You can see through?!
I think it sounds optimistic that your doctor hopes it is not a progression.
You are not saying how many infusions have you had already?! This is an important information.
If you had at least 4 or just 2?
In your situation I would make an appointment for second opinion.Giving up on treatment is a serious decision. There are not many treatment options for possible cure available. In a blink of an eye it’s very easy to run out of options, although continuing treatment which doesn’t work is a waste of valuable time. Can he still have you get another infusion or two meantime?! Stoping treatment sounds pretty scary. I would disagree on taking two months break, I think.
What was his rational for taking a break? If it’s working you should get more, if it’s not working 2 more infusions won’t make more harm I would think.
Hugs and positive vibes to you! -
- March 11, 2022 at 6:51 pm
Thank you Edwin!
Oh, you didn’t have many side effects to Zometa?! I read lots of people saying it’s a worst medicine ever with flu like symptoms, bones, joints pain, feeling like being hit by the brick wall.
I can’t afford to feel worse than I feel. I mean there always can be worse, right?! I m terrified to get all these terrible side effects on a top of weakness, nausea, pain.
Our story sounds somewhat alike with lots of disease in bones involved.
The immunotherapy treatment had worked for you. I m still hoping it will work for me too and it just taking it’s sweet time.
It’s nice you are around responding and keeping peoples hope and spirit up.
It’s very easy to lose hope in this situation. Thank you for being here!
Daisy…. -
- March 10, 2022 at 5:50 pm
Hi there,
It’s nice you are such a dedicated husband. It’s scary to have your loved one fighting this nasty disease.
I was too pretty hyped up by J. Carter’s story when I started my battle with melanoma 2 years ago. With every new treatment I kept reminding myself that there is still hope and I m not suffering too much yet.
Now with bones Mets which hurt like motherfucker I keep reminding myself that I m still around and there is still hope and it can be worse. So there is always silver lining.Braftovi/Mektovi took time to adjust for my body. Started with vision changes which became normal after couple days. Tiredness yes. Tried not to pay attention and solder on. Overall I didn’t like how I felt on this medications but there was no other choice seem like. I would describe it being dried up to my bones this is how it felt. No amount of water could satisfy this deep down thirst…
There was lots of changes with my monthly visitor. Something was going on with clotting I think. I was losing a lot of blood, like scary a lot. It was a version of a horror movie.After 7 months the medication stopped working.
Getting Ipi/nivo now and seem like some lesions are growing bigger and some lesions are getting smaller. Not really very positive news.Your wife’s story sounds pretty hopeful. I like the treatment plan so far. Braf/Mek inhibitors will slow down the disease for now and maybe later she can go back to immunotherapy. She only has one spot now. It’s a pretty good result to one treatment.
There are strict criteria to qualify for the trial. She needs to fail previous treatment for starters. Your wife’s doctor is not the one who decides about TIL. There is cancer.gov site where you would want look for the trial if there is open one and contact them to ask for eligibility.
Stay strong and positive!
Daisy… -
- February 21, 2022 at 10:21 pm
Hi Grace,
I was following your posts. Thanks for an update.
I can not answer your question but sounds like you have a great attitude and pretty good news. Despite minor hick up with brain Mets. Bran radiation or SRS is generally tolerated pretty well. You will sail it trough. Sounds like you have a good team of doctors too.
I didn’t notice much of my SRS. They make a face mask or mold of your head, part of neck. It felt like a S&M play gotten wrong. I was offered to take a mask home and I politely declined.
It’s nice you are feeling great. Do you mind me asking how’s your LDH levels look like?
I have quite a few Mets liver, bones, couple things have visibly grown recently. Scary to look at the mirror. I can see them. After starting ipi/nivo I have been hurting pretty much everywhere. Hurting a lot. Taking lots of pain meds. My LDH is pretty decent though around 250. I wonder how does it work Mets, pain, LDH. Is there any correlation.
Hugs and well wishes your way!
Daisy..
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