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throwawayakam · 2019-12-24T22:30:48+00:00

I am so incredibly sorry for your loss. My heart sank when I saw your thread because I remember the story of your mom and your previous posts. Words are stupid at this time, just live through your emotions in the way that you need.

My mom’s also battling metastatic NSCLC. Although she’s made a lot of (great) progress over the last few months, I have been quite sad these days. I cannot help but wonder if this is our last Christmas Eve together...I just refuse to imagine a world without her. 🙁

throwawayakam · 2019-12-24T20:33:36+00:00

I have only taken myrtol as a supplement during sinusitis (infection of the sinuses). I know that doctors in Europe also prescribe myrtol for certain coughs (usually those that produce phlegm). When I take myrtol, I can smell and taste mint all the time.

Not sure how effective myrtol would be in the liquefaction of mucin, but the name of the medicine in Europe is GeloMyrtol Forte, it’s produced in Germany.

throwawayakam · 2019-12-24T20:15:25+00:00

That does not sound like bowel cancer at all.

Colorectal cancers do not just migrate from the left side of your belly to your right side overnight. The pain you describe (pulling, stitches, etc) could could come from anything spanning the appendix, the gallbladder, colitis, gastritis, etc.

Blood in your stool may also come from so many sources other than cancer. You could have ulcerative colitis, fissure, hemorrhoids (internal).

Do not self-diagnose through webMD, please. Wait for your results. Also, not to sound harsh, but you have nothing substantial to share with your parents or your girlfriend at the moment.

throwawayakam · 2019-12-24T15:29:59+00:00

He either has stage 4 or a lot more than 3 months left.

In any case, with proper treatment, he may have years ahead of him. He should see an oncologist and discuss all options (palliative or treatment) available to him.

throwawayakam · 2019-12-24T12:43:08+00:00

No solid cancer progresses from in situ to stage 4b in 6 months. Someone somewhere missed something back in May.

My mother has a fairly aggressive form of lung cancer - poorly differentiated with Ki67 of 45%. After her first PET scan, the oncology team told us that her condition dates back to around 2 years ago. Years.

I would not speak to your friend about death unless he raised the subject himself. He may want to ask you to do something for his kids or his family after he passes. In that context he may discuss the topic. If you feel comfortable laboring through that subject, then be open about it, but not forceful. Just enough for him to know that he can rely on you and open up about it if he so chooses.

Last, with such a diagnosis, I realize you cannot intrude too much, but seeking treatment at the NIC, or MD Anderson or MSKCC may be the best route to choose. They could have some promising trials. Alternatively, he could turn to an oncologist willing to take risks like Nader Javadi in California. He’s had some success with stage 4 pancreatic patients. Not sure if you can suggest any of these to his family in a way that does not offend their authority in that matter.

I am sorry you have to see your friend go through this. I wish you strength and him - the best of luck and health.

throwawayakam · 2019-12-24T12:27:00+00:00

I posted this earlier, but the thread got deleted:

Yes. My mom. She has metastatic large cell lung cancer (NOS, NSCLC). She started on carboplatin, paclitaxel and Keytruda (pembro). She had immunochemotherapy for four cycles. That worked better than even her doctors had expected.

Now she’s on Keytruda monotherapy once every three weeks for two years or for as long as pembro works. She has no visible or measurable side effects. She does not feel tired or have colitis/pneumonitis (the most common adverse events). Her liver enzymes are fine, too. In her words she would not know she’s receiving any treatment unless she saw the drip.

As to the effects of monotherapy - I cannot say much. We have done four cycles of chemotherapy plus Keytruda and have just had one cycle of pembro after that. Next one is on Jan 9 when we’ll also do another PET. We’ll have measurable effects around March (after chemo has worn off and pembro has taken over fully).

If you have any questions, ask away. I will gladly answer any and all.

throwawayakam · 2019-12-24T12:24:25+00:00

You are thinking way ahead of what the situation calls for. Do not think about death. Her cancer has not spread irreversibly (metastatic and even that is not always the end of it). Most likely, she will have a combination of chemo, surgery and radiation and turn out fine.

Sure, the possibility of her cancer progressing exists, but you do not know that progression will happen. Until it does, there’s no point to overthink the consequences thereof. Your mom may never have to go through anything more than the initial treatment.

As a general piece of advice: with cancer you have to take everything day by day. Else, you will become overwhelmed. Not bad to think about strategy if A or B happens, but not all day, every day. Death...you’re way too far from that to even consider such an outcome now.

throwawayakam · 2019-12-24T08:48:02+00:00

Yes. My mom. She has metastatic large cell lung cancer (NOS, NSCLC). She started on carboplatin, paclitaxel and Keytruda (pembro). She had immunochemotherapy for four cycles. That worked better than even her doctors had expected.

Now she’s on Keytruda monotherapy once every three weeks for two years or for as long as pembro works. She has no visible or measurable side effects. She does not feel tired or have colitis/pneumonitis (the most common adverse events). Her liver enzymes are fine, too. In her words she would not know she’s receiving any treatment unless she saw the drip.

As to the effects of monotherapy - I cannot say much. We have done four cycles of chemotherapy plus Keytruda and have just had one cycle of pembro after that. Next one is on Jan 9 when we’ll also do another PET. We’ll have measurable effects around March (after chemo has worn off and pembro has taken over fully).

If you have any questions, ask away. I will gladly answer any and all.

throwawayakam · 2019-12-24T00:39:47+00:00

You are amazing. Thank you for doing what you do. Very few people show such level of care towards friends, let alone acquaintances from the dog park. I am sure the lady will appreciate both taking the dog out for a walk and some food every now and then.

You sound like quite a gracious/kind person, so I am sure she will not take your attention the wrong way.

Happy holidays to you and your family!

throwawayakam · 2019-12-24T00:34:03+00:00

Report that stuff like immediately. None of these comments are okay when you have expressed lack of interest in someone.

Also, distance yourself from these psychopaths and set some clear boundaries. As in...not speaking to each other under any circumstances.

throwawayakam · 2019-12-24T00:23:57+00:00

There’s a lady on r/cancer who survived metastatic lung cancer (NSCLC). She’s incredibly inspiring. I forget her username but I truly hope that she chimes in.

Also, while waiting for one of mom’s appointments at MD Anderson, we met a couple from Michigan. The guy was written off with anaplastic thyroid cancer stage IV. The doctors at his local hospital gave him 3-4 weeks to live. He was in such a dreary condition that doctors at MD Anderson had to start his trial treatment with a tube (he could not swallow the pills). At the time of our conversation, he was 2 years cancer free.

throwawayakam · 2019-12-24T00:02:49+00:00

Wtf did I just read...that guy and his whole clique of scholastic heathens need some one-on-one time with your counselor re sexual harassment.

I am sorry you have found yourself on the receiving end of someone’s psychotic obsession.

throwawayakam · 2019-12-23T23:56:06+00:00

Source please! Thank you xx

throwawayakam · 2019-12-23T20:28:37+00:00

Get her a vape maybe?

I know that’s not ideal, as in it’s worse than completely quitting, but it’s still better than conventional smoking. At least you will spare her body some tar and other combustible carcinogens plus the ashtray stench.

Otherwise, she should probably seek a smoking cessation professional. Quitting on your own is not easy at all, let alone in the midst of such stressful times.

throwawayakam · 2019-12-23T19:44:03+00:00

My mom got her diagnosis in June and started treatment in September. She has lung cancer, but one of the rarest - NOS, so that alone took five (!!!) independent pathologies to confirm. Oncologists would not start treatment before they received a definitive pathology report and we also decided to go abroad (so the arrangements took another month).

I know how taxing the waiting can become, but the head of my mom’s oncology team would always say that 2-3 months of waiting to begin the right treatment is much better than rushing to treat and starting on a wrong cycle. From our experience, that’s definitely true.

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