Shana wrote:Hi Ben,
Shot 3 today and knocking on wood so far so good. The tincture is helping the D a lot now that I am taking the correct dosage. It doesn't affect any pain that I might have, way too weak and very small dose. I can easily drive and carry on as normal unlike pill form pain killers. I may just buy a bottle of it tomorrow out of pocket if the insurance issue persists. What the heck, it's only money ... and comfort is worth a lot to me these days!
My potassium plummeted from 4.3 to 2.8 so they are making me take 40mgs a day for the next 7 days. Those pills were made for horses not humans. I get them down by slipping them into applesauce like they taught me in the hospital. I will get blood drawn on Saturday to help determine if I start round 4 of Irinotecan + cetuximab on Monday. I will push for at least the Cetuximab if they want to hold off another week for the Irinotecan. I find that my willingness to be more agressive when I feel stronger physically reassures them. I'm not a complacent patient, my survival depends on staying engaged and informed. Along with finding mutual support from each other, I think gaining knowledge from others is one of the critical reasons we're all part of this club.
My 93 year old dad fell and broke his wrist today, I wasn't able to take him to the ER since I was hooked up to saline but my daughter managed to leave work and take him. Just another slice of life that we all experience. He looks good and sounded great, still waiting to hear if he will need surgery which is worrisome at his age but just taking all of this one day at a time. He lives in San Francisco and the hospital is very good.
Loved the link to the tough baby pic!
Hope that your numbers improve until you're in the GREEN as in go for it zone.
benben wrote:Hello Bone pain my old friend.
Yep I had zarxio shots Thurs and Friday.
I had CBC done today.
Unfortunately my ANC are 760 so I got the third shot today.
Took 25 mg of CBD at the cancer center once I knew I was getting the shot.
Got the shot around 9 am and some mild bone pain set in around 3pm.
Gradually increasing, took some more THC/CBD chocolate about an hour ago.
Pain level around a 3-4 on the scale.
Hopefully that means I can get treatment tomorrow and ANC will be up there.
Platelets still low but going slowly up - up to 119. Guess pumpkin and kale are working.
My nurse kinda threw me off today saying "We might have to change your meds".
Unfortunately I guess I wasn't thinking and didn't ask her to elaborate. I was assuming she meant the zarxio to something else since my neutrophil counts were still low.
but she might have meant folfox. I'm pretty sure I will be done with oxi after round 8. They took an LGH scan today. First time they took it and my counts were 257.
Normal is 225 on high side. So there is some elevation there. HGB still slightly low too.
Shana wrote:Simon and Garfunkel... good choice considering the circumstances!
Sorry that the Zarxio is rough for you, good that you have the CBD on hand to help with the bone pain. Keep up the pumpkin and kale, sounds like a great natural boost and healthy too. I've never heard of LGH scan, is that a blood test too? So many tests and numbers to keep up with, the human body is so complex and we take it for granted until the clockwork goes haywire!
I had chemo today, Irinotecan + Erbitux, my oncologist adjusted the Irinotecan dose down a bit and ordered a CT scan to see how things are looking. I want to know and hope there's been improvement to indicate that we're on the right track. I don't have a set number of rounds, we're just going with 2 weeks on and 1 week off for the near term and quite possibly for the long term. She said my CEA is just too high to use. My platelets are within normal range, postassium is low side of normal now but magnesium is low which has caused some minor cramping which I shake off once I get moving. I'll be taking both Potassium and Magnesium pills to get me back to normal.
Zarxio shots scheduled for next week based on WBC results from this Saturday's bloodwork. It's a drag to go in for the shots but that's my job now so I'm just doing what I need to do, nothing is too much work when it's about maintaining and improving my condition. I feel lucky to have been spared the bone pain (so far) so no complaints from me.
Hope your evening goes well and your pain mellows to none
Shana wrote:Good news for you, Ben!
You've struggled with neutropenia for so long and have been so vigilant. I hope your WBC stays stable and you can feel better about being around people while still avoiding germs.
I'm hoping for some good results from upcoming CT but I'm also aware that I will only have had 4 Irinotecan infusions prior to the scan. My oncologist is particularly interested in seeing liver met shrinkage which was noted back in June but I was off all chemo including Erbitux after my surgery for about 5 weeks. Hoping for the best and keeping track of my labs. My WBC dropped from 7.6 to 4.9 without chemo last week so I expect to see it drop again after Monday infusion and will probably need Zarxio next week. ANC is 3.8 so that's still okay.
Hope your week goes well, I'll update CT results next week after I see my oncologist.
Best to you!
Shana wrote:Good news! Dr called me yesterday afternoon to tell me that the CT showed liver mets shrinkage of about 1cm and incredibly no more blockage! Of course I still have the colostomy but more shrinkage means possible resection and connection down the road... the long road. She was very pleased and didn't want me to have to wait until Tuesday to share the positive news.
Just keeping hydrated and started taking my tincture but just knowing that it's working makes the side effects easier to deal with!
It's going to be 109 today, incredible for Northern Cali, they're harvesting grapes at 4am to dodge the heat of the day. I'd love some fog but even San Francisco is sizzling hot!
Hope you're doing well and so happy to hear that you're done with the oxi!
Wishing you the very best,
Shana wrote:Hey Ben,
Just checking in on you. Glad to hear that you're done with the Oxi. I only had Folfox for two sessions and remember that weird cold sensitivity which was quite bizarre.
Chemo today and then Zarxio on Wed, Thurs and Friday. My WBC is about 4.5 but she wants to keep it from falling after todays chemo. We discussed Neulasta as an option but since my next chemo treatment is 12 days from now I fall short of the 14 days without chemo required for Neulasta. It's about 60 miles round trip to cancer center but well worth the trip x 3 to keep WBC in normal range. Hoping that my no bone pain luck continues, but if not then I'll try your CBD regimen and see if it works for me.
Stay cool, stay strong and hoping for your continued good results!
Lee wrote:If you got 6 rounds with OXI, I believe you are okay. That is the newest trend. I had 12 cycles when it was still experimental, soon after it was approved, they dropped the number to 8. And some time with in the past years down to 6.
Good luck, That bone pain sounds like no fun.
Shana wrote:Glad all is well with you Ben,
You need to eat more but I know it's hard to do when your stomach is going in all directions. I lost quite a bit of weight too and only recently have been able to gain some back. I was down to 126 lbs which was way too skinny for me especially without my former muscle tone. I am up to 138-140 now and have notice increase in calf muscle from walking. I've managed to get 2-3 miles in on non chemo days. I went to Costco one day when it was too hot outside and Nordstrom as well. I had to replace most of my clothes due to the weight loss, which I quite enjoy, been a long time since I was a size 6! (only upshot in this ordeal) II never thought it would be so hard to actually gain weight since it's been a battle to lose in the past.
I had first Zarxio shot yesterday, no bone pain (knock on wood) and scheduled for two more. Then I am off treatment next week and resume chemo on 9/18 if bloodwork all checks out. My tincture of opium is keeping diarrhea in check. Happily my family doesn't have to hear about my bowel life all the time. This forum is the one place where we can be as graphic as necessary
Steroids were reduced in half, I am hoping for more reduction since I'm not experiencing any nausea with the new chemo cocktail like I did with 5FU. I was getting a whopping 20mg and got 10 mg on Monday. I was able to sleep some but no more than 5 hours with waking up here and there. I've been up since 5am, breakfast is warming on the stove, waiting for my daughter to get up and eat before she goes to work. The steroids do help with appetite, do you get any as pre-med prior to infusion? If so, how does it affect you? I just get such a surge of energy that lasts for 2-3 days then I pretty much crash for the next day to catch up on sleep. It's no wonder that some athletes crave the stuff!
It's cooled down here finally and we're supposed to get some sprinkles today but it's just passing through and then more summer temps in 80's and perhaps low 90's. Hope it cools down for you too and it's just awful that kids set fires and destroyed all that land. There's just no reason for that, I hope they catch them if they haven't as yet.
Have a great day, hugs!
I received 7 rounds of folfox.
1-2 full dose
3-6 90% oxi - full 5FU and Leucovorin
7 - 75% oxi - full 5FU and Leucovorin
8 - no oxi - full 5FU and Leucovorin