Starting Treatment.

[Jacksc06]

Hi everyone. Well the time has come!. After nearly a year since my diagnosis, treatment starts tomorrow, (Bendamustine & Rituximab). Feeling a little lonely, anxious and emotional. I keep telling myself that despite side effects etc. That this is actually to make me feel better. Responses from anyone including those who has had this form of treatment would be greatly appreciated Thank You.

[ezabella]

Hi Jacksc06, I wish you all the best for tomorrow, hopefully the treatment works well for you, I am also diagnosed recently in February 2016, and expecting to start treatment in three months time. I am trying not to think about CLL, so haven't been reading what members post in this forum. I wish this treatment will keep you in remission for many years to come. please keep us updated. My English is not so good in writing, couldn't express my warm wishes to you, take care.

Ezabelle

[Jacksc06 in reply to ezabella]

Hi Ezabella. Thank you so much for your response. Your English is absolutely fine. I too try not to think about CLL too much. I tend to 'Lock things away'. until I need to deal with them. I find this much better than worrying about things. Wishing you the best of luck with your treatment also & take god care.

[Oleboyredw-uk]

Hi Jacksc06,

First, wishing you well in the treatment, I hope you get good results. I cannot comments specifically on BR as I went down the FCR route. FCR is a tougher regime and if my experience of that is anything to go by you should have a 'smooth ride'.

Importantly, make sure you have pencil and paper in case you need to make any notes. The amount of information that I got I'm glad I took some. Don't forget books etc. The first Rituximab infusion takes a long time so you'll need something to avoid the boredom. It does vary but for my first Ritux they gave me a low dose on day 0 and on day 1 the rest. All other cycles I started on day 1. I think that was a local choice.

Not sure what extra drugs you'll get to help with the BR (with FCR there are a few), I found it useful to build a spreadsheet to show when I had to take them them then ticked it off as I went. With BR you might not have the same consideration.

rob

[Jacksc06 in reply to Oleboyredw-uk]

Hi Rob. Many thanks for your reply. I will indeed take notes as I find that the amount of info given is mind boggling. I have four different lots of tablets for nausea etc, & five Hypodermics with Nivestim in to be administered from day 9 of treatment. so all in all the start of a journey into the unknown. Once again many thanks for the support.

[thompsonellen]

Hi, I'm on a different treatment, but my only advice is to try to take it day by day and try not to make too many assumptions. You don't know what the side effects will be. In my case, they were less than I expected. Further, I was hospitalized about 10 days before treatment and was feeling pretty badly. The meds will make you feel better so even if you get slammed with side effects, you just need to be as brave as you can because you are doing what you need to do. Good luck, and keep us posted.

[Jacksc06]

Hi, many thanks for your reply. You are right, it needs to be taken on a daily basis. I think I am probably thinking worst case scenario so any thing less is a bonus, so its head down & move forward. Once again your reply is much appreciated.

[denise6496]

I also did 6 months of B+R plus a 2 year maintenance that just ended in time with a breast cancer dx. No problem with the cll treatments so now the new anxiety for the new chemo and it's side effects.

[Jacksc06 in reply to denise6496]

Hi Denise. thanks for the reply & info. every little helps.

[Jacksc06 in reply to denise6496]

Hi denise so sorry I didn't catch the end of your response. ( busy thinking about my own problems) Please be strong you will be in my thoughts throughout my treatment.

[bigunwill2]

I had 6 months of treatment with BR. Take reading material, music or movies to occupy your time. The first day is long. I would also take lunch and snacks or have someone with you to go get them. Drink lots and lots of water. They will give anti nausea meds in iv which will be good for the day. Continue lots of water every day--at least 64 oz.

I had low grade fever the 1st few days, but after a yucky week, I would have 3 good weeks. I started last November and as of August am in remission.

Best of luck.

[Jacksc06]

Hi thank you for your response, very helpful. I have books & magazines.I Have read a lot about drinking lots of water so your advice is invaluable. So very pleased that you are in remission.

[Saska-Jul31]

Really hope all goes well for you and you soon feel the benefits of the treatment.

[Jacksc06 in reply to Saska-Jul31]

Thanks for the reply. very much appreciated.

[Mild-Rover]

I've had this treatment a few years ago and it wasn't that bad as I recall and more importantly it provided benefit and I got remission as a result. I can't add any more than has been mentioned already in the responses except to suggest that if possible try and get out to the countryside at this time of the year to appreciate the gorgeous colours. It is uplifting and one of life's simple pleasures. Even if you haven't the energy to walk any significant distance, the atmosphere will take your mind off the treatment and encourage some positive thoughts. Good luck and you're not alone.

[Jacksc06 in reply to Mild-Rover]

Hi. Thank you for the response. I agree if possible to get out of the house to clear the cobwebs away and take my mind off the treatment. Once again thank you, very much appreciated.

[fieldmeadow]

Feeling emotional and anxious is understandable. As for the loneliness - is there anyone you feel comfortable enough with who could sit with you during treatment or at least collect you following your first treatment?

Family and close friends often wish to help in practical ways, and this could be an ideal way to involve someone who wants to support you but does not know how to.

All the best for tomorrow. We all wish you well.

[Jacksc06 in reply to fieldmeadow]

Thanks For Your Response. It helps to know that people even complete strangers care. I have people to talk to. But I do find that people seem to distance themselves either through fear or ignorance. I have friends but I feel that they don't know what to say However we will get through this. Again thanks for the support.

[fieldmeadow in reply to Jacksc06]

Yes, some people do seem to distance themselves from you when they hear the word "cancer" , often not knowing what to say or do. Sometimes WE need to take the lead by, for example, asking for a lift or help with shopping. People often feel more comfortable 'doing' rather than 'chatting' in the first instance.

[Jacksc06 in reply to fieldmeadow]

Thanks for the reply, I completely agree coaxing people to assist is the way forward.

[ap64]

Good luck and hope you feel relatively well while in treatment. Will say a prayer all goes well.

[Jacksc06 in reply to ap64]

Hi very much appreciate your response. I will persevere and get through this part of my life. Thank You.

[virdieblue]

Though I knew treatment was coming I teared up when the doctor said it was time to start. It is another milestone...

Virginia

[Jacksc06 in reply to virdieblue]

Thank You For Responding. I agree another milestone on my journey. I am determined to get through this. Again Many Thanks.

[nvp815]

Wishing you the very best of luck as you begin treatment!!! May this lead to a long remission and healthier days ahead. I look forward to hearing about your progress.

Warm regards,

Nan

[Jacksc06 in reply to nvp815]

Thank You. Hoping to feel well for the first time in years.

[scarletnoir]

Hi there -

I had 4 rounds of BR 4 years ago, leading to a complete remission - which still continues. I won't write more here, as I have written the details several times before - you can look at my 'old' posts', if you want, for the details. It wasn't trouble free, but well worth it.

I do hope you have a good result with the treatment - best of luck!

[Jacksc06]

Thanks I will read up on your old posts. Hoping For Remission, and realise that you have to take the rough with the smooth. Again Many Thanks.

[jan1780]

Wishing you all the best in your treatment

Hope everything goes well

Keep us posted

In my thoughts

X

[Jacksc06]

Thank You. So Far So Good.

[casanova]

I had six treatments of bendamustine and ofatumumab with minimal side effects. Do drink plenty of water, try not to worry and take one step at a time. I wish you well and hope you achieve a good remission. Let us know how you get on.

Maureen (UK)

[Jacksc06 in reply to casanova]

Thank you for your reply. I will take this one day at a time. Good advise regarding water intake, many others agree. Small steps to start with. Again Many Thanks.

[fussybritches]

My husband had 6 treatments of Bendamustine/ rituximab, from September 2014 to February 2015. He took the prescribed anti sickness drugs he was also given and was fine. He started IVIG in November 2015 (privigen) to boost his immune system. He has been in remission from the CLL since the end of treatment although he has had some problems with chest infections. All in all, he has been happy and well. Good luck with your treatment, there is light at the end of the tunnel!

[Jacksc06]

Thank you for responding. So pleased for you and your husband, really positive news. It feels like unknown territory at the moment, so positive thoughts and move on. Thanks Again.