Ixempra!

Hi ladies, We'll, I haven't checked in for a while, lots of stuff going on...basically I will be changing my mode of treatment to palliative care. No more chemo or radiation for me, and I am going to focus on quality of life. I will still get treatment if I need antibiotics or such. I had "the talk" with my oncologist and she has been talking with everyone about my my care. Since I had 7/10 WBR they don't feel it would be beneficial for me to get the final 3 doses, I was delayed about 3 weeks because of my hospitalization. Studies have been done (as far as I know) with straight continuation of the radiation, and as I said, more probably would not be beneficial. Plus the fact that my brain is turning into Swiss cheese. I am very forgetful and have some short term memory loss, although I suspect that will resolve. My onc feels that even though the chemo was mostly working it's not a great one for me, and it is the only one left for me. The leptomenigeal brain mets are the bigger issue. If I didn't have that I have no doubt I would just power through the chemo. The prognosis for this type of brain met is poor. Right now I have decided to have the best QOL possible, and recent studies have actually shown for some people life expectancy can be expanded with just palliative care, especially when you have a condition such as mine with a poor outcome generally speaking. I feel like I'm talking in circles...:). I've been getting treated now for the pneumonia for 10 days. The upside is the pneumonia is improving and hopefully they will let me go home tomorrow. I feel really good, just tired. It's hard to pick antibiotics for me because I am on amniodorone for my heart, and they are hard to use for me because they are not compatible. Plenty of IV choices, just not good oral choices. The best news of all of this is that the pulmonologists feel there is a good chance that I may have had a spontaneous pleurodesis because of the severe infection all the scarring may have helped me. We'll see, I hope so. They are going to put me on one of the few Antibiotics I can take orally, and if I do okay, hopefully homeward bound. I have really enjoyed talking with all of you, and I still believea Ixempra is a good med. I'm praying for all of you. Kelly

kelly

️️Hugs and prayers. You know I am thinking about you

Brenda

I shaved my head end of May and while on lxempra I am growing hair. It's gray. Plus eyelashes and eyebrows. Not wearing a hat. A little product works. But I would never where my hair this short. Lol. I think in another month it wil be pretty good.

Hi Brenda

getting #5 today.

my onc will scan me end of this month or next month. All liver enzymes in normal range. Kidney function ok. Tumor marker elevated to 788. Could be from cancer cells dying off scan is better. I feel better. Lol. My onc is slow to do scans. She liked chemo to have a chance to clear out. Will see what TM is this chemo cycle.

My really bad days Friday and Saturday. Usually better day 8,9,10.

This is the first chemo that I am nauseated and vomit in my mouth. Yep. Never has nSusea been an issue. I am right there with you on that. Barf 😝😝

Lxempra is a big gun. Yep.

My hair is growing in. When is your next chemo ? POW 👊🏻

D

Hi Brenda and Diana! Just wanted to say hello. I will say I feel pretty good not taking the Ixempra. Especially the no abdominal pain, nausea, inability to eat. I've even gained a few pounds. I have an appt with my onc today so we can talk more about palliative/hospice care. I feel pretty good overall except for the difficulty breathing, especially when climbing stairs, but my oxygen demands have stayed the same. If I didn't have these leptomenigeal mets to the brain all of my decisions would be different. That changes my prognosis so much. I am on palliative care right now though I don't need anything now. My gait is slightly off, and I suspect I may need to move my bed downstairs. I pray for you guys and hope that Ixempra does It's job. It is a strong chemo. Those se are doozies. Keep on updating. Even though I'm not on this med anymore I care. Kelly

Just wanted to check in. I had my first Ixempra infusion last Tuesday (the 4th) and surprisingly haven't had too bad a time of it. I was all prepared for nausea/vomiting and that hasn't happened. I am more tired and weak but the pain I had when the cancer was progressing is basically gone so I'm very thankful for that.

I was at my cancer center 5 days in a row last week--Monday for scan, Tuesday for chemo, Wednesday for Neulasta shot which doctor never ordered and she was out so back on Thursday for the shot, and then on Friday for a follow up with the doctor for a yeast infection and a rash under my arm. My neuropathy in my right hand which had gone away in the three weeks I was off Halaven is back but it's not a new symptom for me so I'm not stressing over it. All in all, I feel lucky to just be dealing with fatigue and weakness.

Kelly, I wanted to wish you all the best with palliative care. Last week with all the hospital visits I actually started thinking how nice it would be to stop all this medical madness.

Brenda, I hope your brain MRI report shows no change since June 15th.

And, Diana, I hope Thursday and Friday aren't too bad for you. My TMs are similar to yours--704. I'm not sure when they'll be taken again but certainly hope to see them coming down.

Hoping the best for all of us.

Pat

Brenda,

I'm sorry to hear about your baby brain lesions. I hope the WBR is effective in wiping them all out. This cancer stuff is really hard and I wish none of us had to deal with it. I will be thinking of you and hoping your new treatment goes smoothly with little side effects.

Pat

Brenda, I am so sorry you're going through the WBR too. It just doesn't seem fair to have one thing piled onto another. If it helps at all I had the 7/10 treatments and they weren't that bad, especially once I was on low dose steroids. Our diagnosis' are fairly similar, except for the leptomenigeal part thank God. I have no regrets about palliative care. It's nice to feel so much better. I like the palliative also because I can keep tracking lab, scans, etc. I guess when you go to hospice care they don't check anything. I did have some good news as far as my labs go. Everything was normal, minimal anemia. My chest X-ray was even a little better!

Pat, I'm glad you're doing well with the chemo. I hate nausea! I hate cancer! I like you guys.:)

Diana, have you found out any results yet? I kind of fell out of touch because I had a friend stay with me this week. I love having my family and friends visiting! Now is the time to do it. What a waste of money if you just come to see someone because they are just too ill. I like the normalcy of just being able to talk,laugh, and have fun.

I'm thinking of all of you, and Pat, I'm sorry you had to start on the Ixempra. People have had good success with it, and I hope you will be one too. Kelly

Kelly,

It's really good to hear from you and especially to hear that your labs are good and even your chest x-ray was better.

I'm really curious what palliative care means where you are. Do you switch to a palliative care doctor and not see your oncologist anymore? I'm still trying to figure out the difference between palliative and hospice. I think where I am (in Boise) you can only get palliative care if you're in the hospital.

You sound good and I'm glad you had a good visit with your friend.

I'm slowly feeling like I have more energy and strength. If I counted right, this is Day 11. I've been finding I can do one outing a day (and by outing, I mean something like a trip to the grocery store) and then I need to rest or nap to rebuild my energy. I hoping in Week 3 I can get closer to my normal energy levels.

Diana and Brenda,

I'm thinking of you guys and hoping we all are feeling as good as possible.

Diana, I'm so glad to hear you feel good the 3rd week. I have an appointment for a second opinion at the Seattle Cancer Care Alliance on September 9th which is during the 3rd week of my second cycle and I'm hoping I have the energy for the flight and the whole big hospital experience.

Wow, 117 is HOT! I think the hottest I've ever experienced was a time in Phoenix when it was 114. Our temps are great today--in the 80s--but the sky is filled with smoke from a fire in SW Idaho so no going outside for me with my asthma.