Finally had my stat MRI 24 hours after the reaction. In this hospital stat is anytime within 24 hours of order written. MRI did not show tissue swelling or changes in neck and throat and the nodes have shrunk a little. Chest x-ray was normal, but did show another enlarging node on the right close to my port.
The oncologist felt it safe to give the Cyclophosphamide, the last of the chemo drugs. This time I was given more pre- meds. Benedryl and Solumedrol by IV in addition to prednisone by mouth and an anti-nausea med by IV. IV fluids before and after infusion. So far so good, but nurse said this drug causes the most nausea and vomiting. Hoping all goes well, and no freaky reactions tonight, so I can go home tomorrow. Rituxan infusion set for Tuesday. I have no what’s to follow since having an allergic reaction to one of the other drugs. I hope to learn more after I see the doctor next week about where we go from here.
Can’t wait to go home and take a shower and sleep in my own bed!
The saga continues…..
ReneeSusan
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ReneeSusan
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Your day 4 was very scary, indeed. I really can't imagine going through all that and still managing to write an update. God is with you. May He continue to grant you strength each step of the way. Thank you for sharing your experiences. You are truly an inspiration. Praying you have a good night and better days ahead, ReneeSusan🙏
Thank you. Yes I believe He gives us the strength and grace we need to go through the tough times. Very grateful! If my experience with is diseade and treatment helps to educate and demystify it for someone else, that’s a good thing plus it’s cathartic for me!
So glad to hear you are on target to go home. Re:the nausea, my understanding is that certain GI cells turn over rapidly, we make new ones constantly. So areas of "new tissue" can be upset when the stomach produces acid after eating. The key seems to be eating easy-to-digest foods, and eating smaller amounts at a time. So patients who "graze" more during the day, eating small amounts of easy to digest/bland foods more frequently, report fewer problems. Plus taking anti nausea meds on a schedule, instead of waiting until nausea occurs.
I hope you are one of the patients with minimal problems.
Yes definitely eating smaller meals as my appetite has mot been goid and more bland foods do help. So far only anti- nausea meds prior to chemo, but have prescription for when I go home if needed. The only problem with those is the constipation that has been a problem for me.
Do you like applesauce? Maybe watered down applesauce? I hesitate to recommend apple juice since the sugar in concentrated juices is acidic, as well as the fiber being removed. Ask the docs if docusate is OK, it's a stool softener which can help any bowel residue soften up & move easier. When you aren't walking around, are eating less, and/or taking narcotics, constipation can be a problem.
Thank you for your update. I am at high risk for Richters and It definitely helps to demystify treatment. I am keeping you in my thoughts and prayers. Stay strong you are not in this alone.
Thank you! Yes, I am so fortunate to have so many folks sending positive thoughts and prayers. Hoping you never have to face this but if you do, there are treatments available and promising clinical trials in the works.
Samm22, We have some things in common. I retire this week and found out I have SLL in February. I am seeing Dr. Roeker at Memorial Sloan and am also Trisomy 12, unmutated with a Notch 1 mutation. Like you I'm concerned about Richters and am reading a lot about CLL. Nothing seems to ease my worry except Dr. Roeker.
Good to know about Dr. Roeker. I saw Dr. Mato at MSK and now see Dr Furman at Cornell in the city. I found out I had CLL about 6 months after I retired.
I see you started Zanu March '23. Did you meet treatment criteria or was it solely because of the Notch 1? I'm not high risk by IPI because my Beta2 is 2.9 vice >3.5. I'm stuck between knock it down as low as you can vs if it ain't broke don't fix it. I feel great and my blood work is normal, but knowing I'm Tri12, unmutated with Notch1 worries me. I read 30% of Richters patients have those markers.
Getting home to your place will be welcome relief! You got through this rough patch, and that is good! The first can be the worst. Your team can adjust pre-meds to reduce those severe reactions to the chemo drugs. Rooting for you, ReneeSusan!
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