Starting Chemo tomorrow: I have held... - CLL Support Assoc...

CLL Support Association
12,976 members20,172 posts

Starting Chemo tomorrow

I have held off for 9 years now and tomorrow is the DDAY for me. NHL CD-20. Had a scan yesterday after the last one 18 months ago. The nodes in the neck have enlarged and my throat is extremely contradicted. I am going the BR and chemo route. Along with issues with my voice I have constant nasal congestion. I mean every day. The regiment is 2 treatments on back to back days once a month for 6 months. I do not know hat to expect here. The oncologist seems to portray it is not that bad. I have had 8 rounds on Rituxan alone in 2 regiments. The 2nd set did not give us any results. I wanted to talk to an Immunotherapy specialist for some option but now they tell me I need to start treatment immediately. I hope I didn't take this W&W too long. Wish me luck

18 Replies
oldestnewest

Good luck for a smooth journey through your treatment.

Jackie

Reply

So far so good

Thanks

1 like
Reply

I was on W&W 12 years. In my 11th year doc mentioned treatment. I took 9 months to get second and third opinions. Luckily all agreed. I got my port and started chemo (FCR) and had the Rituxin split over 2 days to make it easier on the body. You probably are getting it the exact time u need it. It does not work if u do it too soon.

Since u mentioned having Rituxin prior, then it must not be a problem for you. I didn't have any problems with it either. After 3 cycles I was tested and in remission. That was 9 months ago.

Many have posted great results with BR.

I suggest a port to save veins and keep your hands free.

Good luck! 💕🙏

1 like
Reply

Thanks

I did have 2 previous 4 session rounds of Rituxan. 1st one we had good results, but it did not last. Tried another session of 4 treatments 2 years later and had no good results. Hoping the BR combination works better. OC has faith.

I will go through this treatment and then let people know who it is going.

1 like
Reply

Why chemo and not some of the newer treatments? I had 6-rounds of BR ending in early October 2018. The thought of having chemo is much worse than actually having the treatment. That being said, for my particular circumstances which includes being 55 years old at the start of treatment , unmutated disease and no other health issues I would have gone a different route if given a second chance. I didn’t do my homework up front, unfortunately. I do feel very good today but I will have to likely have to consider a second treatment in the next 1-2 years.

Best

Mark

Reply

Yea, I pushed that yesterday on looking at immunotherapy treatments and the Oncologist stated that the new treatments take too long to act and that symptoms dictate acting now. He is seriously worried that if my throat closes anymore I might not be able to breath. That is why this W&W treatment kinda sucks. I am still going to talk to a specialist on Immunotherapy on June 7th, but I will have had 1 round of BR chemo by then. Let me ask you something did the treatments reduce the nodes?

1 like
Reply

Makes sense. Don’t worry about the BR it isn’t that bad. Bring some good reading material as boredom is the biggest issue. The BR will knock your nodes back very, very quickly. You will likely feel as if you have the flu a couple days after the second treatment each round. I think onetime I stayed in bed for the day.

Reply

Thanks, that is kinda what they told me to expect. 1-2 days after 2nd treatment day each session will be interesting. They did give me nausea meds through the IV and in pill form.

Reply

Same here D Day wishing you the very best on your chemo journey .

I did the same thing Bendumstine witrndhout the Rituximab. I was 13q something it worked Great. I started chemo very early stage 2. I was 50 now 61. God bless you and may you have Great success.🙏🙏🙏

1 like
Reply

Hi DDay2012

Be careful on BR.

You might like like to read my recent post on BR and my experience.

Maybe it was just my bad luck.

My one and only treatment (cured me?) That is ALC dropped from 84 to 0.5 but at a cost.

Still left wondering about future options ?

Good luck.

Joffre1

Reply

Is your doctor a CLL Specialist? Many on some of the new therapies have had an immediate reduction in the size of their nodes. As your doctor is concerned about breathing, it probably makes sense to get round 1 of BR while you look at other options. If you give your general location, others may be able to suggest a specialist near you.

Reply

I am still going to Mount Sinai to talk with a Immunotherapy specialist June 7th. I do want to go down that path if it makes sense.

Thanks

Reply

Good luck, hope your treatment goes well.

jenny uk

Reply

Pleased to wish you tons and tons of good luck.

Bubnjay1

Reply

Thank you and I did get to watch several episodes of an Amazon series. Made the time go by.

Thanks

Reply

Best wishes for your recovery.

Reply

Going well

Thanks

Reply

Things went well yesterday and I go back today for another round of bendamustine today.

Following the normal regiments of treatments for my Lymphoma. Feeling ok and some node swelling is down, but that could just be the steroids they gave me as part of the treatment yesterday.

Thanks for all the thoughts.

1 like
Reply

You may also like...