CLL Treatment

[jaypax]

Hello All. I was diagnosed with CLL about 8 years ago and until this year was on 'watch & wait' but in August my spleen had enlarged to the extent that I needed treatment. I had my first round of chemo in September when I was given Bendamustine & Rituximab. The effect was dramatic and within 48 hours my swollen lymph nodes had disappeared. I followed instructions about drinking plenty but noticed that my urine was orange coloured and cloudy for a few days. But I felt really well. Then 10 days after my chemo I developed a fever (38.3 degrees) and was hospitalised for 5 days on Tazicin and fluids infusions.

My next round of chemo resulted in another fever and hospitalised for 3 days. And again with my 3rd round I was hospitalised twice in one week. My bloods in the meantime are fairly good but each evening my temp increases to 37ish and I feel feverish. I am due for a review next week of the whole treatment plan depending on my bloods.

I wonder if anybody out there has had a similar experience. If so, I would like to get in touch.

[Psmithuk]

So sorry to hear you are having all sorts of ups and downs with your treatment. I can't help you as I'm still of W&W, but I hope this is sorted out for you soon.

[jaypax in reply to Psmithuk]

Hi

Thank you for responding. I appreciate your good wishes. Good luck to you with the W&W, I hope you are one of the lucky ones and it goes no further.

Best wishes

Jaypax

[DJANGO]

Hi JAYPAX

I had two rounds of B+R out of a scheduled six sessions with much the same experience as you set out.One significant difference was that I developed an all-over body rash which was extremely painfull.I opted out of further treatment with my doctors support.My blood counts returned to normal and have remained there for2.5 years.You may have the same experience.

Good Luck

DJANGO

[jaypax in reply to DJANGO]

Hi Django

Many thanks for your reply. I have had three rounds but wish, like you, I had only two. The reaction to the third is still ongoing with shivers but normal temperature and emotionally low. Due for a review on Tuesday and my feeling at the moment is to stop treatment and go back on watch & wait.

Your story has given me a lot of encouragement. Thanks and be well!

Best wishes

Jaypax

[DJANGO in reply to jaypax]

Hi Jaypax

My experience was very similar.Evenings became a low point as I waited to check my temperature with great trepidation.In addition to shivers I also had rigor attacks .I had my last chemo session in May 2012 and as of today things are still looking good.My intervals between cosultations moved from 1 to 2 to 3 and now 6months.I am under the care of a doc. whose name comes up on this site from time to time.

Good Luck

Django

[jaypax]

Hi Django

Thanks for sharing your experience, it sounds almost exactly what I am going through now. I am pleased that you have had such a good outcome. Long may it continue for you. My review of treatment is due on Tuesday so we,ll see if my haematologist is still of the opinion that chemo is stopped. That is exactly how I feel now, enough is enough, I can,t go through this again.

Thanks again and keep well.

Jaypax

[stolliegirl01]

Hi jaypax ,i also was just diagnosed CLL 3months ago...w/w 3yrs,my spleen is also starting to become very uncomfortable and now needs investigation.I have been having alot of bone pain left side arm, leg , and shoulder Did you get alot of bone pain before you were treated?i wish you all the best with your treatment kick butt.

[jaypax]

Hi stolliegirl. Like most of us, I have done some online research into cll and it seems that almost all of us show different signs and symptoms. At no time have I had bone pain but the enlarged spleen was the deciding factor in starting treatment. Can you ask your doctor if you can have a ct scan of your abdomen, it could be useful especially with your spleen problem. As far as the bone pain goes, I would push your doctors to investigate it further. Sorry I can't be of more help. But I wish you all the best in the future.

[stolliegirl01]

Thanks jaypax..I have made an appt to get some referals..should know after xmas.

[jaypax]

Well done. I hope that the referrals will find what's going on with you. Good luck with it all and have a happy Christmas & a healthy 2015!

[Newdawn Administrator]

Hi jaypax, I'm sorry I can't be more helpful in terms of your nasty treatment response but I wanted to wish you well and hope that the difficulties can be resolved and you experience remission.

I've recently been hospitalised (I'm on W&W and pre-treatment) with high fever and unidentified infection. It's a miserable experience and you've had so many more episodes. Emotionally it hits hard and I hope you can stay strong. Sometimes the emotional response to treatment and the impact hospitalisation and fear has on us can be underestimated.

I have bone pain but it's not felt to be CLL related. I'd urge anyone to have that problem investigated however.

Very best wishes to you and hope you have a lovely, symptom free Christmas.

Newdawn

[jaypax]

Hi.

Thank you for your response.You are so right about the emotions being hit hard. I have always been a pretty level headed guy and have always coped well in stressful times but you hit the nail on the head. The emotional impact is certainly underestimated. That was something I did not anticipate but I have had wonderful support from my GP and from my local Tenovus group.

Because I have been through such a hard time following each treatment, my haematologist decided to cancel December's treatment. So it's now 6 weeks since my last chemo and I feel so much better although I still have episodes of shivering and a mild tremor. I had a ct scan last week and have an appointment with my consultant on Monday to review my treatment. In spite of the the awful side effects to BR, I have responded well and my blood results were improving when last tested. I shall see how things have progressed next week. Fingers crossed for some good news!

Are you having your bone pain investigated? Good luck to you with your treatment and I hope you manage to stay free of any more fevers and infections.

With best wishes and a Happy Christmas.

Jaypax