Braftovi Mektovi update

[missyrand]

My husband has now been on this combo for a week. Extremely tired, running low grade fevers starting at 3 pm each day, nausea, but we will continue at least til the 2 week mark to determine if it will help; the Mektovi as a single agent produced significant rash on head, face, neck, chest, abdomen and back that had to be treated with doxycyclin and topical clindamycin, which helped.

We've had a sad week: my mother-in-law died from COPD on Saturday. Gratefully, we were able to drive and get into the room with her before she passed. So the stress just stays steady, and we do the best we can.

Peace, and prayers for safety and moments of blessing to each of you over the Thanksgiving holiday. I am very grateful for each of you in this community.

Peace,

Missy

[Vflowers]

Missy, my condolences to you and your family.

Thinking if you this Thanksgiving holiday.

Vicki

[missyrand Ambassador in reply to Vflowers]

Thank you Vicki.

[MeAndMom]

My condolences Missy!

Wayne started the combo after being on just Mektovi, right? Is he at full dose? Any breaks? Prednisone? How was response so far?

Wishing you a peaceful Thanksgiving.

Nadia

[missyrand Ambassador in reply to MeAndMom]

He was full dose Mektovi for a month as solo agent: no impact, melanoma continued to grow, major rash, lots of nausea, lots of fatigue, afternoon fevers intermittent and weight loss of another 5 pounds. However, his ALT and AST values have decreased. Blood cultures all negative for infection/ bacteria.

Added in Braftovi a week ago at full dose: new side effects added to above include constipation, more nausea which equated to less eating and drinking = 2 IV hydrations so far. After first infusion, W got behind on the oral compazine and vomited the whole way home.At the second hydration he got an IV push of small steroid to try to settle his stomach along with compazine IV push with the fluids. This perked him up and helped him feel much better by the evening.

Monitoring creatinin closely in bloodwork. Can't see any impact so far on the lymph node size or cutaneous tumors. CT scans between the Mek and initiation of Braftovi showed continued liver tumor growths and lymph node involvement under both arms.

Will see doc next Tuesday and determine if we will continue or scan or what. I suspect continuing weigh loss.

Heading an hour away to see my 87 year old mother and our children and my siblings for Thanksgiving, then will head home Friday. We have scheduled a memorial service for my mother-in-law for Dec. 6 in northern VA where we live so W won't have to travel again, which wears him out. Grateful the family will travel to us.

Peace,

Missy

[SGHSweethearts]

Missy,

Hope this medication combo works for Wayne, and things calm down, so you are able to enjoy the holidays.

May you have a very Blessed Thanksgiving.

Michele

[missyrand Ambassador in reply to SGHSweethearts]

Thank you Michele.

m

[HSsweetheart]

Hang in there Missy.

[missyrand Ambassador]

thank you.

m

[kellyOd]

Prayers your way ❤️ Hope you are enjoying the holiday ❤️

[missyrand Ambassador]

Kelly,

There was a grand assemblage of Rand's and Conners at the Thanksgiving table after enjoying the Macy's Parade in our pajamas. We gave thanks for the close family relationships we have, and missed the ones absent from our midst from recent death.

Tonight, Wayne and I will enjoy a bounty of leftovers after we travel home today.

How was your day?

Peace,

missy

[kellyOd]

I’m glad you got to spend it with your family ❤️ It was low key and just with closest family and I was completely okay with that 😊

[doulagirl]

Missy, my condolences to you and your family. That is a lot to take on in a short amount of time. I am glad you could spend Thanksgiving with family; wishing you all a blessed Sunday and please keep us updated on Wayne's condition.

Love,

Dorothe

[missyrand Ambassador]

Thank you Dorothe

[SGHSweethearts]

Missy,

Praying you and Wayne hear some good news today at his doctor visit.

I am so sorry to hear about Wayne’s mothers passing. He has so much to deal with.

It is wonderful family will travel to you for a memorial so Wayne doesn’t have that weighing on him as well.

Glad your Thanksgiving was nice.

We traveled to Tennessee. It was short 4 day visit, but so good to be with family. I thank God for the Airlines with their wheelchair assistance to get Mark from point A to point B.

I know it is hard to see so many weeks ahead, but do you have land for Christmas?

We will go back for Christmas, but are staying for 10 days so much more relaxing.

Michele

[missyrand Ambassador in reply to SGHSweethearts]

Michele, Good for Mark for accepting the wheelchair access in the airport. You have a long stretch to look forward to in 3 weeks, and I know having extra hands, laughter, and a change of venue can be quite helpful.

Next weekend we have a graduation celebration 100 miles away for our daughter finishing nursing school. It's at her dad's house, and I've coordinated the food, and have good help there. I hope Wayne feels well enough to go.

We had planned to be with my mother on Christmas because it is the anniversary of my brother's death, but I think it is too much for us to keep Wayne traveling, and I already cancelled a family holiday lunch for 12/21 and told my other sister we can't make it 12/24-28.

We will see what we learn today, and have hydration scheduled for Wednesday and again Sat. Not sure if this is going to be our new normal (hydration twice a week), but it might be. It is my hope that we will stop the Braftovi/Mektovi combination, he'll be less nauseated so he can use less compazine which contributes to all day sleepiness and bedrest. But his liver may be waning to the point that it is as much a culprit as the medications. I just can't tell.

Thank you for the check in. So many things to do for the memorial service and family coming. And working. Just trying to keep a list and check it twice, and my dear friend is coming Thursday to run errands for me fetching the reception food. My car is currently packed with sodas, beer, wine, and paper goods. My neice packed up a fresh green bean dish and homemade cornbread stuffing and the extra fried turkey my brother in law made, so dinner is ready for everyone Wednesday night once I thaw and heat it. Thursday I have a ham, scalloped taters and veggie puffs for round two. Good thing I have mad skills as an event planner to draw from over the years.

peace,

missy

[SGHSweethearts in reply to missyrand]

Missy,

Sure sounds like Wayne is really going through a lot. How is his weight loss? I don’t know why, but it always worries me with Mark when there is such rapid weight loss, and so much.

Did he stop the Braftovi/Mektovi? And did it help with his fatigue and nausea?

My thoughts and prayers are with you both as you prepare for tomorrow. I know that is a tough day coming up.

Michele

[MeAndMom]

Hope the hydration helps a little!

And this may seem ridiculous but peppermint oil seems to help some too, especially during travel. Is Wayne on zofran/raglan?

Good luck with all those logisticals!

[missyrand Ambassador]

Tell me more about peppermint oil please.

He tried reglan, and it was not effective for him. He's now alternating compazine and zofran, but today we got a script for a few weeks of 40 mg Decadron to try to improve energy and settle stomach to get through the funeral, and then will try Marinol for appetite and nausea. He's down another 13 pounds in past 2 weeks.

missy

[MeAndMom]

Oh my that’s a pharmacology degree. Peppermint essential oil- you can put it in a diffuser and Wayne can carry a small bottle and just smell it when nauseous. I also heard smelling rubbing alcohol on a cotton ball works (from chemo patients). I like having the oil around because if it doesn’t stop the reaction at least it’s a soothing action (essential oils are powerful).

And... THC? Hasn’t worked well for my mom but maybe that’s due to our lack of knowledge. Seems to help a lot of people.

[missyrand Ambassador]

I hear you on the THC. Some folks only benefit if smoked. Some swear by CBD oils. just looking for alternatives for management that aren't as sedating.

Appreciate the peppermint essential oil tip.

missy

[carlsbad317]

My prayers to your family. Your words stress stays steady is so true for everyone fighting and fighting along side of our loved ones.

I am sorry for your loss.

[missyrand Ambassador]

Thank you

Missy