CLL Support Association
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Just Finished my First Round FCR!

It still feels like an out of body experience. I was on W&W 12 years with no pains/ illnesses, etc. I was fortunate to have my first treatment admitted to hospital for 4 days last week. It was comforting knowing that if anything happened, I was already with medical professionals. My port made the treatment go easily especially since I didn't know I would be on 24/7 IV fluids. My oncologist split the Rituxin the first 2 days. Started at 50 and worked my way up to 150 possibly 200.... can't remember. All went well. Benadryl is my new best friend! I started chemo mainly due to anemia ( no AHIA). I had to get Procrit shot due to hemoglobin dropping a little. Apparently, it is common for the red cells to get suppressed while the white cells are being attacked. No problem with shot. Just for 2 hrs while waiting to be discharged, I got fatigued. It lifted and I went home feeling good.

Complication for me is that I have gastroparesis. I kept up my every 2-3 hour eating schedule. But since I got home, not interested in food. I weighed myself when I got home. Was disappointed I had lost the weight that took me a year to gain and maintain. I am only talking about 4 lbs! Got dx with this crazy digestive disease ( not related to CLL) a year ago. Will hopefully find a food balance going forward.

My WBC went from 225 to 63! Nodes started to shrink. Just felt a little tired first full day home. I have doc appt this morning and look forward to seeing the current blood work. Not looking forward to the N shot. Hopefully no side effects.

Nurse said to keep low profile 5th-10th days after chemo. I will stay home. Fortunately I am retired. I didn't know you could sweat out ur chemo so nurse said to wash my clothes separately from my husband's for the first week. Also she suggested using separate bathrooms in my home. Luckily we have 2. She said again for the first week, if I had to share, flush twice and clean toilet each time! Glad I have 2 cuz I go a lot in a day!!

Grateful I feel ok so far. The next week or so can get bumpy but have heard lots of positive feedback about chemo and not everyone has a bad experience. Keeping my fingers and toes crossed!

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That’s very helpful feedback for those of us who may be going through this soon GM. Sounds like you’re in competent hands. I can understand the gastroparesis causing issues. We have people who suffer with that on the Diabetes Site and it certainly makes life difficult for them.

It concerns me should I need overnight stays because my hospital doesn’t have a dedicated haematology Ward and they end up ‘farming’ you out to other hospitals or trying to find a single room on elderly care wards with the seriously demented.

Useful advice and hope the rest of your treatment goes smoothly.

Best wishes,

Newdawn

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I am so lucky my local hospital is all private rooms!

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Hi . I was diagnosed with CLL in 2006 and started FCR as part of the flair trial in March. No hospital admission. Had very odd experience 45minutes into Rituximab infusion but after adding extra antihistamine and anti emetics felt fine after 30 minutes and carried on. Next day no reaction. Went home with chemo in tablet form plus ondansetron and 2 anti virals. Ended up terribly constipated and even 3 types of laxatives gave no result. Next course they added codanthramer and this has done the trick plus the last two courses have been given intravenously and have had relatively no side effects apart from slight nausea and a few mouth ulcers.

All in all it hasn't been the nightmare I was anticipating and my readings now are good and white cells and lymphocytes normal. Two more sessions then it's done and hoping for a long remission. I wish you all the very best and look forward to hearing more about your journey.

All the very best

Jan

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I will have BMB after my 3rd round. Hopefully I will be able to stop treatment then. So good to hear you are doing well! Keep up the good work!😉

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They do it differently here. BMB pre treatment and another three months post treatment . Are you UK or elsewhere??? X

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USA! Had BMB 2 weeks ago. And will after 3rd round... Interesting!

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Thank you for the info. Much appreciated. Good luck.

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Thanks for that GMA27 - glad not as bad as you feared. I am very interested because on Monday 18th I will find out what "arm" of the drug trial I will be randomised to. Fully prepared to get FCR ( 1 in 4 chance ) so it's great to hear details of the treatment. Many thanks for posting and good health!!

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I was dreading FCR popping up for me but it did and have had to be philosophical about it. Still the gold standard they tell me but when you have been ' teased' with the new exciting treatments you just expect to get one. However FCR it is and it has not been anything like the horror stories you hear and there is always back up from your research team who are just fantastic.

Try not to be disappointed if FCR is the one - it's working well for me and thousands of others. Wishing you all the very best.

Jan x

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Thanks Jan - will try very hard not to be disappointed but ... knowing my luck!!!! Actually my consultant said he thinks I will do very well on FCR and it will give me six years ( I think he meant remission not years on earth!! ). That is why it is so good to hear from people like GMa27 and yourself who are actually going through this xx

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My team have a man who has just had his 10th anniversary since completing FCR!!!! Let's try to beat him!!!! Xxx

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We'll go for it!!!!!

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Glad to hear and definitely will take that challenge!

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I’m on 2 of 6 treatments of FCR and my consultant said, almost as a throw away remark, that he has some patients who are in remission 15 years down the line. As a result, they are wondering if FCR May be a cure for some people.

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Wow! Wouldn't that be amazing! How are you feeling?

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I’m day 5 now, so tiredness and nausea starting to affect me. I’m loath to take the anti-nausea, as they make me so constipated. It’s really painful and unpleasant. Been to the doctor today and been given laxido, so hope it helps. Good luck to you, hope your journey through chemo is as easy as possible. X

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Hope the laxido helped!! Suppositories during my worst gastroparesis days helped me. Check with your doc.

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Good luck! Let us know. All the treatment choices have potential....all have "possible" side effects but more importantly they are here for us!

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I have finally read through all the replies to your post and

saw that you are in USA. Are you going to a CLL specialist and being treated at a cancer research hospital.? If you are uncomfortable sharing where you live, would you share which state? I am in PA and am gathering information about best treatment centers just in case. 😒

SMS

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I live in Southeast Florida. I went to Moffitt Cancer Center in Tampa for my second opinion with Dr. Pinilla, CLL expert. I was also able to get another opinion from CLL expert at the James in Ohio. My hematologist oncologist is 2 blocks from me. She was right on target with her recommendation for starting treatment after 12 years. She was the one who sent me to Moffitt. I was going to go for second opinion but hadn't started researching yet. Glad she knew where I should go. Moffitt is approximately 4 hrs away by car. I am fortunate to be able to be treated so close to home. My daughter and grandchildren live 30 min from Philly. You mentioned living in Pa.

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Thank you for the positive info. Much appreciated as I go into hospital tomorrow and start fcr on Wednesday. Been so busy this week but it has prevented me from dwelling on it. I hope everything continues to go well for you.

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Good luck Lucyjack!@!!!!

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Thank you.

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Good Luck Lucyjack. you've got this!

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I am doing great so far! All the best to you!

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Thanks to all the wellwishers

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How are you feeling?

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Hi, my worst day was yesterday. I finished f & c on monday. Had to visit chemo unit for them to look at midge bites on my leg. They prescribed antibiotics. Whilst waiting for my lift i was clinging to the wall outside hospital throwing up! How embarrassing. I rang reception and asked if they could clean it up. Took one lot of antib but vomitted an hour or so later then again at 7 ish. 3 times in all.

Took antisickness this morn so hoping for a better day today. Its hard trying to get all the medication in at the right time - with food,without food, an hour before or two hours after.

Tbh i dont think ive been too bad as ive been out for short walks every day.

How r u x

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So sorry to hear that. I am only on acyclovir and allopurinol. You just doing FC and no R? Did you get Neulasta shot few days after?

I did well the first round. Enjoying the break in between. ❤️

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I had rituxan over two days wednesday n thursday and took f n c orally at home. Much better today, been out n about n been eating. No sickly feeling. Might take anti sickness tomoz just to b sure. First review with doc tomoz so will get first blood results since chemo. Will post them.

Really pleased u r doing well. Keep it up! X

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Oh ur taking pill form. Mine are all IV. So glad u feel better! Looking forward to good report for you!

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Just had my neulasta shot. Hopefully no side effects. WBC down to 26 from 225! HGB up from 7.5 to 10.1. Wow! Nurse said just take my Tylenol twice today and just enjoy life. She said the laundry and bathroom stuff is overkill but I will be cautious and find a happy medium. Nurses at hospital made it sound I needed to confine myself home. I am fortunate my hubby doing the shopping. Luckily it's not flu season yet. I won't go into public places for a few days. Some have to work...some raising children....I will find a balance and hope I don't walk past someone with "germs"! Thank for all your support!

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I don't think the separate bathrooms or washing clothes a bit separately, especially if you have any bodily fluids spilling out is over kill....Our cancer center said the same thing as my husband had BR chemo therapy....It is protect those around them as much as the patient himself. My husband was flushing his system out a lot because of the chemo and was in the bathroom a lot as well. In the beginning, right after an infusion it just makes sense not to be out and about....And my husband had the neulasta shot with no side effects!!! Best wishes for an easy journey...

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I can't imagine the hospital nurse telling me to do it without good reason. Was doing it anyway before asking my oncologist nurse. Not a huge inconvenience. Luckily all children/grandchildren grown and out of the house living in another state. When they come to visit in the next few months, will be careful.

It's been almost 24 hrs since Neulasta shot and I had no symptoms!! Yay!

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So happy to hear that.....

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GM, wishing you all the best. Please keep us posted. Remember it may be a bumpy journey but it will smooth out. STAY STRONG J.R.

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Thanks for the post, GM! All the best to you as you continue treatment. Hope you are able to resolve the digestive issues soon.

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Thanks for heads up GMa27, glad it is going fairly well for you. I am nearing treatment so if I am selected for FCR you have provided an insight and useful tips about bathrooms and laundry. Take care and keep us posted. Thoughts and prayers

UK Sparky

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Love your positivity, GMa27! I finished FCR last October. It was a rough ride for me, but I have to say I haven't felt this good in years! Wishing you all the very best as you continue your treatment...onwards and upwards. Best wishes, Sue from NZ :-)

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So glad you're feeling good now, Sucee! Wishing you a peaceful and happy summer.

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Thank you very much! Please stay in touch re your journey too.

Best wishes xx

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Good morning, GMa27,

I read your post with great interest since I am on W&W five years after diagnosis. My CLL markers indicate I might be at this stage for awhile, but one never knows what this disease will do. It was so enlightening to read your description of your entire experience and the possibilities of future consequences. Knowledge of what treatment may be like has reassured me that the experience is not as scary as my emotions make me think.

I found it incredible that you have to use a separate bathroom and wash your clothes separately from your husband’s clothes. One more reminder of the effects of chemo treatments on all body systems.

I feel your frustration with having to be on gastroparesis diet. I was on that diet for months after a scary, bizarre appendix episode ending in surgery on 1/9/18. I am still slowly adding foods that I could eat without problems before my surgery.

I wish you the very best as you continue to recover from the effects of chemo and your digestive problems. May your blood counts continue to improve, your energy and your positivity continue to increase, and your diet move beyond the gastroparesis diet.

(I loved sensing how positive you are during this time of treatment. It came through loud and clear in your post.)

Wishing good days and good health to all.....especially you, GMa27

SMS

P.S. Do you live in UK? I am in the USA and am interested in the different approaches to treatments and chemo drugs available between the two countries.

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I live in Southeast Florida. Since I am mutated, 13 q, anemia, 63...all 3 docs said FCR would be my best chance for remission. Dr. Pinilla at Moffitt said since I was still under 65, he felt it was my last chance for chemo. Got my port and BMB to confirm the crowded bone marrow and then my second journey began. I think of W&W as my first. If it weren't for a few nodes along my neck and my 4-5 blood tests a year, I would have never known I had CLL. My Dad had it for 30 years and never needed treatment. I am grateful for the smooth ride during W&W, which I know many don't experience.

Gastroparesis develops from 3 causes: 1. Virus attacks vegus nerve in stomach.

2. Can develop after stomach surgery.

3. Complications from diabetes.

Mine cane from a virus. Not like when u get sick.. it slowly over 4 months slowed down my digestive system. I decided after a year of dealing with it, feeling like an eating machine, having to eat every 2-3 hrs..to just ignore it 2 days ago and concentrate on my CLL healing. Having to plan 2500-3000 calories a day, might sound fun to some, but it was tiring. When I took the burden off of me Sunday nite, cuz I was not hungry all day....I felt better. I am sorry I lost the 4 lbs I worked on all year to keep! Yes it took a year to gain and keep 4 lbs eating 2500 calories a day! I am tiny/skinny to begin with.

SMS...good luck with your gastroparesis diet! I know the excitement of trying a new food and enjoying it and being able to digest it without pain!

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Lid down, flush twice, that's all that's required. And I didn't separate my laundry from my husband's. :-)

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WOO HOO - Glad to hear you got through round 1 very well. Only 5 more to go and you will be done. Good Luck to you.

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I am hoping for a miracle and can stop after 3 rounds. All 3 experts said I should repeat my BMB after 3 treatments. I guess they are finding some reach remission sooner.

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Sounds quite a positive start. Sending good wishes to you.

Peggy😀

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So happy to hear things are going along well for you, GM! And glad you've been able to manage your eating issues successfully. You sound very strong and upbeat. After a delay for low numbers, I start FCR round 3 in two days. I don't wish any of this on you, not at all, but am so thankful for all the shared information and support. And I will gladly give you four pounds of mine to make up for yours. (-: Wishing you all the best! We can do this! Love and prayers from Ohio.

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Are you also going to stop after 3 and repeat BMB like me?

Good luck with #3 !!

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Thanks so much! I don't think they're doing that in my case. I've never had a BMB. Wonder if I should be asking about it?

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I had BMB 12 years ago to confirm dx. Along with Fish and Flow. Then repeated last month to confirm crowding in marrow. Are you at the James with Dr.Byrd? Maybe it depends on markers? 2CLL experts along with my local hematologist said that was their plan for me. My WBC is 26 HGB went from 7.5 to 10.3 after first round. Going Monday for another blood test. You can always ask. Has your blood work improved!?

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My doctor is Kerry Rogers at OSU, but I'm doing my chemo with another oncologist/hematologist closer to home, then will return to OSU for followup. Yes, my bloodwork has improved a lot, other than a bout with neutropenia (better now). I think I will ask, so thanks!

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How are you feeling now? Hope the nausea and weakness hasn’t made an appearance?

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Feeling good. Round 1 went smoothly. Not sure if staying at hospital and having 24/7 IV fluid made the difference, acupuncture or just lucky! Blood work good. No problem with Neulasta shot. Doc appt Friday to go over blood test and schedule July chemo.

How are you feeling? Blood work?

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Great news, really pleased for you. I have my blood tests on Friday, so will see them.

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Question : what happens if u don’t flush twice and share a bathroom with a 13 and 9 year old? My oncologist never told me to flush twice and not share BR. This was in 2014!😮

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Interesting question cuz the nurses at hospital never asked who lives in my home. Unless they asked my husband when I was sleeping. I think they see the worst of the worst and were just giving us suggestions. Altho I did read, i think it was in Moffitt Cancer brochure, that listed to wash clothes separately. But my doctor never mentioned it to me.

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