Treatment begins this Thursday

[carol_h]

August 25, 2015 CBC blood draw, my hemoglobin is 7.6, platelets 12, WBC 156. Yet another transfusion Friday, August 28th, 2015, which will bump up my hemoglobin over 9, so I can begin treatment. Thank God for blood donors! Treatment to begin this Thursday, Sept. 3rd & Friday, Sept. 4th. Treanda & Rituxin. Remaining positive!!! Thank you to everyone on this blog, I have learned a lot! I will get through this, I will be fine!!!

[Newdawn Administrator]

Sending you massive best wishes for the start of your treatment Carol. Yes you will be fine because you're determined to be and positivity and belief goes a very long way!

Best wishes

Newdawn

[carol_h in reply to Newdawn]

Thank you Newdawn!!!

[9876]

Good luck, sending positive vibes your way, keep us posted on how you get on with treatment xxxx

[Hidden]

Best wishes for Thursday. I heard yesterday that I start treatment on the 9th Sept. It still hasn't really sunk in because it's happened so fast.

Sending you positive vibes.

Mudark

[Peggy4 in reply to Hidden]

Very best wishes Mudlark. Keep us posted. Peggy.

[Austin55 in reply to Hidden]

Good luck and best wishes to you too mudlark. Hope it all goes well.

Take care

Willie

[PaulaS Volunteer in reply to Hidden]

Hi Mudlark, I hope all goes well for you on Sept 9th. Am I right that it's the FLAIR trial you're on?

Wishing you all the best,

Paula

[Hidden in reply to PaulaS]

Thank you for your good wishes.

I am starting the FLAIR trial but I don't know which treatment pathway yet. I'll post more on Monday. Hopefully, I should know by then after my bone marrow biopsy...

My 3rd in 3 years Eeeeek!!!!

(My top tip for those who have not had a biopsy yet is to take some pain killers two hours before... but check it this out with your doc first)

[carol_h in reply to Hidden]

Good Luck with your treatment Mudlark! Sending positive vibes and lots of healing energy your way!!!

Best wishes!!!

Carol

[PaulaS Volunteer in reply to Hidden]

Hi Mudlark , I hope your Bone Marrow biopsy goes smoothly. In 2 weeks time I'm due for my 3rd BMB in 2 months! Two are standard for CALiBRe trial that I'm on, the one before them was because they thought I'd be starting on ILLuMInate trial (but at the last minute I wasn't accepted for that). GRRHH.. Never mind, I guess it's the price we pay for going on trials.

Fortunately I don't seem to suffer as much as some folk, during and after Bmbs. Maybe my bones aren't too hard, and that makes it easier.. Not that it's good to have soft bones, of course.

Anyway, wishing you all the best as you start FLAIR trial. I hope that whichever "arm" you get, it will work out well for you,

Paula

[carol_h in reply to PaulaS]

Good Luck Mudlark and Paula! hope everything goes smoothly and you both sail through the procedures & treatment!!!

Carol

[jules_c in reply to Hidden]

My husband started the FLAIR trial 3 weeks ago, we were so disappointed to get the FCR arm. But after an uneventful first round of FCR and my continued "googling" on both treatments, I am thinking this is ok and maybe meant to be. Hoping FCR will take it away for a good long time and when it comes back we will have ibrutinib to fall back on. Good luck with whichever arm you get. Jules

[wroxham-gb in reply to Hidden]

That's really how it happens mudlark. You take care and keep us informed. Support is here.

Best wishes

Sue

[carol_h]

Thank you, 9876 and Mudlark! love the positive vibes!

I'll let you know how the first treatment goes. My sister is giving me a ride on Thursday, a good friend is taking me on Friday. I'm not sure if I should drive, as I don't know what to expect or how I react with the treatment. We'll soon see. Staying positive!!! as my friend Daisy always said, "positive thinking, can only bring positive results!".

Keep smiling!

[Peggy4]

All the very best, keep us updated. Peggy.

[Justasheet1]

If this is your first go with Rituxin they will premedicate you with benedryl most likely.

I had a ride when I had BR and it was great.

Make sure to take all the anti nausea meds needed or not. I needed them for two days after. its too late once your already nauseous. Like sea sickness. And drink LOTS of water. You need to rid yourself of the dead cells by flushing them out and down the drain 😀 Best of luck.

Jeff

[carol_h]

Great! thanks for all of the positive vibes! Also, thanks Jeff, for the good advice on drinking lots of water & taking the anti-nausea med. the Dr. gives to me. I don't like sea sickness, I will have a few gallons of water to drink handy at all times! I have a ride, so many have come forth offering help. It never ceases to amaze me how sincerely caring people are. I have faith in humanity!

I will keep you all updated.

Carol

[Austin55]

Best of luck Carol, stay positive and I hope that your treatment goes as well as mine did. I've had two lots of chemotherapy each were monthly for six months and they were no problem.

The advice and support from the members of this site is second to none.

Good luck and take care

Willie

[wroxham-gb]

Best wishes on the start of treatment carol. Take the lift, and drink,drink the water. You need to protect your kidneys. Always remember that please. It's so important. Being positive is important, sometimes it is a struggle but it will get you through.

Please let us know how it goes.

Best wishes

Sue

[Justasheet1]

Have they given you prophylactic meds to take such as allopurinol for the kidneys and bactrum for infections? That is the norm now.

My BR was a cumulative thing. The first two rounds went easy except the hives and rigors during the first Rituxin infusion. Tell them to slow the infusion down for the first round. Then drink Lots of water and take the antiemetics religiously.

I couldn't handle strong smells for a few weeks after. Everyone is different.

Rounds 3-6 were tougher on me. Basically one bad week followed by 3 good ones for 6 months was my experience but everyone is so different.

Avoid crowds, sick people, lots of hand washing during your tx and good advice anytime.

Force yourself self to eat when nauseous. Even just crackers. It really helps with the nausea.

These were MY experiences. God bless and be positive. This will be a great long remission. Enjoy it!!!

Don't worry about tomorrow. Nobody is promised that. Enjoy everything God has given you that is wonderful today.

Jeff

[Rex12]

Best wishes to you. These next few days of waiting can seem like forever.

Cheers

Lorraine

[PaulaS Volunteer]

Hi Carol,

There seem to be a lot of us starting treatment this summer/autumn... So, you are not alone...

I'd like to join everyone else who has sent you best wishes for this new stage in your CLL journey. We'll all be very interested to hear how you get on.

Wishing you well,

Paula

[carol_h]

Thanks again everyone! My Dr. prescribed the Allopurinol to begin taking the day before along with the days of treatment. I will ask her about the bactrum.

Great help & advice, I appreciate it. It helps a lot. I am a bit anxious, I guess, new road to travel. It helps to be on this site and know that I am not alone, and can learn from others experience. Thank God for this site! I will soon be able to share my experience and perhaps help others in return.

Staying positive, drinking a lot of water, taking all meds prescribed! I'll keep you updated with my results.

Stay Well & God Bless!

Carol

[Fran57]

Hi Carol.

We are also sending our best wishes for the start of your treatment.

My husband has just had round 4 of his FCR and we've found so much information and genuine support here.

We hope to hear soon how well it went.

Fran 😊

[wroxham-gb in reply to Fran57]

Hope things are OK Fran for you and hubby.

God bless.

Sue

[Austin55 in reply to Fran57]

Good luck and best wishes to your husband and to you as I know from experience that this illness of ours affects all of our family and friends too.

We will beat this eventually

Willie

[JanetG]

Will be thinking about you Carol, you will get through it and come out shinning at the other end 😀...

Positive thoughts and Big hugs coming your way !!

Keep trucking Carol !!! Go and kick its butt !!!

Jan xx

[Hidden]

Best of luck to you Carole. I'll be getting my third round of Treanda and Rituxan on Sept. 3 and 4 as well.

[carol_h]

Dear kc1953, Jan, Austin 55, Wroxham, Fran 57, PaulaS, Rex12, Justasheet, Peggy4, Mudlark, 9876, Newdawn,

Thank you again for all of the replies & comments!

Yes, we are all in this together. We are all going through treatment or procedures at the same time! We are healing together!

Stay Positive! Stay Strong!!

Carol

[SusanJM]

Positivity and hugs your way! Please keep us posted.

[carol_h in reply to SusanJM]

Thank you SusanJM, I appreciate your kindness. Now that tomorrow is the first day of treatment, a bit anxious, not afraid, just don't know what to expect yet. I am staying positive, and will definitely let everyone know how it goes. Hopefully, I can share information that may be helpful to others.

I took the Alapurinal today and Drinking LOTS of water!

Many Blessings to our community! Thank God for this site!

Carol

[SusanJM in reply to carol_h]

Hi Carol, how are things going?

[PaulaS Volunteer]

Wishing you all the best for your first treatment tomorrow, Carol... Do let us know how you get on...

Blessings,

Paula

[carol_h]

thanks all! Today is the day!

[PE1234]

Hope it all goes well

Brenda

[lukejensen27]

Good Luck! Hope everything goes smoothly. Sending positive vibes your way.

[PThomas]

Hang in there!

[carol_h]

It's almost a full year since my first BR treatment. I completed the final 6th round on Feb 4th & 5th 2016. Truly amazing how time flies. Amazing as well, my blood work is normal for the past 3 months.

I feel great, haven't had a blood transfusion since 22-Sep-2015. If I didn't have the history of the CLL, I could probably donate. Amazing!

Sending positive healing vibes to our CLL community! although, I don't reply that often on the site, I am always thinking of you all and sending positive healing thoughts and vibes your way!

Enjoy the day!

Cheers,

Carol