Wednesday, March 16, 2011

Round 1 - going strong

Hello, this is Andre again with a quick update from round 1.

First of all thanks to everybody who responded to my previous post ... even those who can't physically help us at this time, your offers and words of support give us strength. Also there was a mistake in that post: Round 3 will be IFOS and not ADR, and the IFOS will be given over a period of 7 days ... we will see how that goes.

About Round 1: we started for Cedars Sinai on Sunday afternoon so we wouldn't have to fight morning traffic to get to our 8AM appointment in LA. That worked well over all, since it gave Radhika more time to think and overcome the dread that chemo is for her. It also allowed us to settle in at the Vedanta society (a spiritual retreat place in Hollywood, 20 minutes from the hospital.) We had dinner there, and went to bed early. Radhika had some pain (like the nights before) but we got enough sleep and got to CS in time for our appointment, even after a quick bite in the hospital Cafeteria. Radhika was emotionally and physically a bit spent, not a good way to start ... but I was relieved that it finally started, because I believe she can beat this thing, and chemo has a good chance of success.

By 10 we got settled in her room (for the day) of the (24 hour) Infusion center. First they put an IV line (if all goes well she will keep this line for the whole treatment) so that they won't have to prick her everytime; next they drew some blood for labwork, then she was wheeled off to get a chest x-ray so that they could be sure the line was in the right place. Forscher told us later that one could see on the x-ray that the tumor has grown and is now also closer to the heart (which explains some chest pain she had since last week.) She was not doing too well, but at 2PM the MTX together with Zofran (nausea med that is supposed to last 24 hours) got started and the infusion lasted until about 6PM. From 10-6 we saw a social worker, a nutritionist and a pain specialist, apart from Dr. Forscher and a bevy of nurses, so we were glad and a bit dazed when we left for dinner at the Vedanta society. Radhika didn't eat much, but she was able to take her evening meds as well as her midnight meds (even though the 4 tablets of sodium bicarbonate were a struggle, but her blood needed to stay alcaline.)

At 3AM she started feeling nauseous (apparently the Zofran didn't even get her to the 12 hour mark) and it kept getting worse. The 6 AM meds came straight back out again and she skipped breakfast ... we got to CS by 9:30 at which time she couldn't even hold water down. They hooked her up to IV fluids and nausea meds and did the lab work: the labs came back looking fine, but Forscher agreed to let her spend Tuesday night at CS, because we were worried she would become nauseous again and not be able to even tolerate any nausea drugs, let alone the pain killers and other rescue drugs she needs to overcome the toxicity of the MTX: she should be at a level of
1000 micromole/L at the start of the treatment to attack the cancer and then she needs to get down to a safe level of 0.15 micromole/L to be allowed to go back to San Marcos (which they say typically happens by 72 hours). The night in the Infusion center was better than the night would probably have been otherwise (they took good care of her, and I got some sleep in a recliner as well) and to make a long story short, she started out at 1052 at 6PM on Monday, was at 11 on Tuesday morning at 11, and then by 6AM on Wednesday she was at 0.22 so that by noon we could go home -- a day early! I was so excited that I promptly locked my keys in the car as we were checking out from the Vedanta Society for the week (a locksmith came right away.) Radhika slept the whole way back, and she is now happy to be in her own bed again. (If you are wondering why I am still up: she had to take a dose of her rescue drug at midnight, and I didn't want to oversleep it.)

Forschers nurse Susan told us it wouldn't this bad next time (they will find ways to control the nausea) and she should be good again to start on Monday. I think Radhika's pain has decreased, which is the best sign that the chemo was a success. We will be better prepared next time as well (I will bring my tooth brush to the hospital next time ... nothings like using your own!)

The next few days will tell us more, but for now good night everybody!

7 comments:

  1. Thanks Andy, for staying up late and updating us. Our thoughts are always with you and Radhi. So glad you can be back home early. Starting the treatment was probably the hardest part, I think the improvement in outcome will sustain Radhi's and your energy along the way.

    Again, loads of love and hugs,
    Latha

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  2. Oh, I'm so glad you posted, Andre! Thinking of you all every minute...much love.

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  3. Thanks so much for the update Andre, give her a hug for me. Coming home early has to be a good sign! Love...

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  4. Andre,
    THANK YOU SO MUCH FOR POSTING. We really appreciate you keeping us in the loop.

    I know you have family help, but we can help with Mira while you are gone to give them a break if needed. She can sleep over during the week and we can drop her off and/or pick her up from school. Play it by ear and let us know if you need any help on that side.

    I am happy to hear you guys made it home early and you seem very upbeat too.

    Hugs and love all around,
    B and the gang

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  5. thanks, Andre!!! the docs sound great--and frankly my hem-onc nurses are always in my mind fringed with light because they knew how important dispensing comfort was....I hope this is the beginning of the routine that will beat this--LOVE, M

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  6. Dearest Radhika and Andre-
    Thanks for keeping us in the loop and happy that you were started as soon as possible. Last year (was it?) this week that we celebrated Holi/Purim at your house, so have been thinking about that and hoping there is good energy from the holidays helping as well. love and the best healing energy to you-
    Kristin

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  7. Andre,

    Thank you for bringing us up-to-date on what is going on with Radhika. You are a remarkable husband… I am sending my prayers and positive energy your way…

    Thinking of Radhika, you and Mira every day!

    Con CariƱo, Sonia

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