Latest test results

[HSsweetheart]

Tony's PET & MRI came back NED. He continues on his Tafinlar/ Mekinist regime. More irritable, less joy. We're very focused on our 16 year old. Tony's set a goal to see him graduate from highschool. Everything is icing on the cake after that.

[SGHSweethearts]

Congratulations on Tony’s scans coming back NED. Is he having any side effects from the Taf/Mek? I’m sorry to hear there is less joy😭. Is he able to get out and enJOY somethings. I am praying that he is. EnJOY every moment you can each other, and both your children. Is he able to still work? I find this is Marks saving grace sometimes to just get out and away from me😬. Sounds like he has an awesome goal, I believe he will attend the graduation. I will pray for that.

Michele

[missyrand Ambassador]

Any NED report is a blessing and worth celebration.

Having positive results from a treatment intervention like the TAF/MEK combo Tony is on is terrific.

Stress and cognitive anxiety that is unremitting is a large toll on everyone. I have had conversations with our support group, my church family, spouse, siiblings, oncology therapist... and it is an ongoing dedicated and ever-changing effort to manage to live with the unexpected. Different things have helped me and Wayne at different points in time. We have also had to consider use of antidepressents, and I am currently taking a beta blocker (now PRN, but was daily for a few months) to get my anxiety and sleep back into a livable range.

Sometimes I forget that all the build up of stress and the treatment interventions themselves can produce cognitive and emotional depletions, often because it creeps up. It can be worth considering having a consult just for this with an oncology psychiatrist. Wayne has found this really helpful and stabilizing as part of our comprehensive approach.

I'm glad you both have graduation as a family experience to work towards and hope for. What strategies is your son using to manage living in a household where Dad has cancer?

Honoring where you are, right now,

Missy

[HSsweetheart in reply to missyrand]

Missy, we immediately offered help to both boys. The 16 yr old accepted counseling with a professional but was satisfied with only one session. I of course was hoping for an ongoing relationship between the two but try not to push my agenda.

Dad hasn't followed through on the 19 yr old's request for permission to take a family member into his confidence. I've brought it up a couple of times but no movement. This is simply a manifestation of my husband's procrastination habit but I'm concerned about my son's mental health. I realize it's my responsibility to pursue this with Tony despite my discomfort. I will try to frame it in light of what is best for our son and not as criticism. It's ironic how unhealthy relationship patterns blow up during times of crisis.

[missyrand Ambassador in reply to HSsweetheart]

It’s hard to balance and be a facilitator of differing needs in the same family. I support a return discussion about what you’d son needs. Cancer is not a shameful condition. It’s a serious health condition.

Finding safe and supportive harbor for each person may look different and can change over time.

How have other folks handled this with teens and young adults?

Missy

[kellyOd]

NED is such a beautiful place.. enjoy it. Ryan has been ungodly irritable because of steroids. He is tapering now. We went through this before the last time he was on steroids and Narcotics because of the cancer. Our relationship really took a hit. My love for him over saw it though. It’s just a rough patch. Remember the problem is synthetic. Me and Ryan had a convo the other day, and I told him I’d try my best to be more sympathetic and empathetic towards this. I know it’s not him. It’s the meds. Still struggling with it; but changing my perspective has really helped. I cannot control the side effects of these drugs so I have to find a way to cope and live with it the best I can.

This is an amazing and incredible time.

Xoxo