Re: Newbie to this updated discussion board

communityreply@lls.org — Thu, 17 Nov 2011 17:35:39 GMT

Hi Ana,

I'm so sorry that you have to go through this, but I just want you to know that it is doable. I was soooo scared before I had to start R-CHOP, so I know exactly what you mean. I think it's good that you're getting a port. I've tried to use peripheral veins over the years, and now my veins are very scarred. I'm also really glad that you're getting a second opinion. MD Anderson is a great place to go. I got a second opinion at Stanford. They recommended a mini-allo bone marrow transplant, which is experimental, and I have decided not to do that at this point. I would ask them at MD Anderson if they agree with BR every 3 weeks. I am currently receiving it every 4 weeks, which is more typical, I think. Also, I am going to have 6 cycles, not 8. Another good question for them.

Well, overall I'm tolerating it fairly well. I really hope the same will be true for you. So far, it has been much easier than R-CHOP. And, the good news is that I've had 4 cycles, and I still have my hair! It may have thinned some, but it's not noticeable. The worst days for me have been 2-3 days after I receive the chemo. After that I tend to start feeling a little better.

Nausea: I have been nauseated during the first 5 days, but I have not vomited. I would really recommend that you ask your doctor for Emend. It is a great anti-nausea drug! I also take compazine, decadron, and ativan (some people take zofran, but I get a really bad headache from that). WIth those drugs, I have been eating just fine. Also, drink lots of water. And, trying eating small amounts of food - it helps with the nausea.

Constipation/diarrhea: I have alternated between the 2. If you get constipated, I recommend Miralax. It is gentle, but it works.

Fatigue: You will find that you don't have much energy, and you have to rest lots. Just give in when you feel tired. I don't plan any activities during the first week.

Insomnia: This is tough, because you are tired, but sometimes it's difficult to sleep. The ativan has helped me with this.

Neutropenia: My white count has dropped with treatment, but so far it recovers by the time I start again. I have not needed neupogen yet (I did need neupogen with R-CHOP). I am just very careful about not spending time with anyone who is sick, not being in crowds, etc. It has payed off so far (fingers crossed!) because I haven't had any infections.

I hope this helps. I remember being in your position and wanting to know what it was like from someone who had been thru it. Let me know how your trip to MD Anderson goes. I am curious as to what they recommend. Thinking lots of good thoughts for you! Let me know if you have any more questions. I'm happy to help.

Take care,

Jen

BTW, I am not working during treatment. With my job, it would be very difficult.

Newbie to this updated discussion board

communityreply@lls.org — Tue, 15 Nov 2011 16:01:21 GMT

Hi Analisa,

I'm new to this board as well. I was also diagnosed 10 yrs ago with follicular NHL. I have had several treatments since then, including Rituxan (~40 times as well!), vaccine trial, R-CHOP, and now currently am going thru Bendamustine/Rituxan. I did have Zevalin in 2007. Unfortunately, the remission only lasted 6 months, and that's when I started R-CHOP. I felt compelled to post here because you look young (I am only 38 years old), and I wanted to let you know that the Zevalin caused acute ovarian failure (menopause). It was a very difficult experience, especially since we did not expect it as a side effect. It has not resolved to date. Chemo can lead to menopause as well, but I think the effects are usually temporary. I am currently tolerating the Benda/Rituxan quite well (fingers crossed), so that may be another option that I'd urge you to consider. Good luck with your decision. I know how difficult these times can be...

Jen

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Re: Newbie to this updated discussion board

Newbie to this updated discussion board