Chemo

[Flabal]

Hi guys. Just out of my apt with the doctor. I’m getting FCR. Oral and injected courses. CT scan coming too. My question is. For those of you who dine this treatment what where the side effects? Did you manage to work during the treatment?

[W00dfin]

I am not a typical FCR veteran as I only had a single FCR. It was given inpatient partly because i was already hospitalized and recovering from sepsis. The first day’s session had to be stopped because it sent me into rigors (uncontrollable chills and shaking). The next day they ran the IV so slowly that it took 12-13 hours. Couldn’t have been done outpatient.

When I went in for the second FCR my platelets and WBC were too low for their protocol to allow chemo. I was rescheduled for the next week and the same thing happened. This went on for almost two months until finally my oncologist decided that the CLL had gone into remission from the first FCR. His reasoning was that the white count didn’t come back up to fight the CLL because the CLL hadn’t come back. He said he had on other patient with this outcome.

I was still out on sick leave due to neutropenia and low immune system.

I did experience “chemo brain” from the FCR when you are in a foggy mental state.

[Ohannie236 in reply to W00dfin]

Hope you are doing well now, WOOdfin. Best to you from Ohio!

[Hidden]

Lots on this site about FCR side effects and many react differently. I was lucky and just had a couple of blips. Out of the 4 week cycle, week 1 was the most tiring . I could sit at a computer and work during that week. Weeks 2 to 4 you come back to normality. But throughout you need to take care with avoidance of infection and listening to your body so that you rest when needed.

Hope you have a trouble free treatment and keep up your daily routine. FCR can so improve your life.

[Flabal]

I keep hearing from ppl that had ok chemo some other ppl seem to have had a miserable time. I’m just wondering how mine is going to be.

[Mariaj66]

Having just finished 6 rounds of FCR , I can say the first week each cycle was hard but keep hydrated and take the nausea tablets prescribed , sleep when tired and don't push yourself , rest and recover remember your not super human . Keep away from crowds and people with infections and I'm sure you will be fine x

[Ohannie236 in reply to Mariaj66]

So glad you're finished, Mariaj. I get my port tomorrow and will be following in your footsteps. Hope all continues to go very well for you!

[Cllcanada Top Poster CURE Hero]

FCR is chemo immuotherapy. The Rituxan is an infusion over many hours, so take a book, or mobile device, with ear buds...

Rituxan can be a bit rough the first time, tell tne oncology nurses immediately if you have any and strange feelings... , feel warm, nausea, tightness in your chest, flushed..etc... the premeds will make you drowsy and you need someone to drive you home...

The Fludarabine and Cyclophosphamide are pills, open the blister packages over a large mixing bowl... they are small and like to fly across the room.

Take the pills as instructed and read all the information you will be given twice. Note the emergency contact number, put it in your phone and on the fridge.

FCR is an accumlative treatment, so it builds over the first 3 month/cycles. Side effects are commonly diarreha.... but it only lasts a few days.

Keep very well hydrated.. drink lots of water throughout the day... and if up at night..more water...

Pace yourself, your body is taking a beating from inside, start running a temperature over 38deg C.. call your emergency contact, before taking any fever pills etc. Follow their instructions.

Try and follow your daily routine, and exercise , eat what you enjoy... and keep hydrated... its very important.

90% of patients have few side effects on FCR, but some need a few days after the rituxan ...just to sleep and relax.

All the best.. remember the oncology staff does FCR probably 5 times a week, so, ask questions... read the literature.

Please let us know how you are doing...

~chris

[Ohannie236]

I'm just about to start too, Flabal. Prayers and love to you during your treatment. Hope all goes very well for you!

[Flabal in reply to Ohannie236]

Hi I’m sorry u are also going through this. Where are u? Why are u starting ur treatment? I am because my red blood cells are low.

[Ohannie236 in reply to Flabal]

Hi, Flabal. I've been watch and wait for over ten years. Starting treatment because of seriously enlarging lymph nodes, swollen spleen, night sweats, and sudden high level of fatigue. My CLL specialist is at Ohio State, but I'm going to receive treatments closer to home, with OSU monitoring. I'm sorry you need to start too. You're in my prayers. All the best to you, and to all of us! Hug from Ohio.

[Mosaicgigi]

Everyone is different. I am on FCR but all intravenous. My last injection is on Thursday and they send me home with a neulasta on-pro that injects automatically on Friday. (27 hours after the last chemo ended). Friday is usually not too bad of a day but then I go down hill fast. Saturday to Monday I am very tired, chemo brain and nauseous. From Tuesday on it gets a little better each day and Friday I am feeling good. So for me it takes a week from the last treatment to really feel good. I’m not sure if the reaction would be different if I were on the oral protocol. I just finished my 3 rd cycle and have had problems with my neutrophils and platelets. I was delayed by 5 weeks before I could start my 3rd cycle. I read so many people that feel fine through the treatment so I think it really is dependent on the person. Best of luck.

Beth

[GMa27 in reply to Mosaicgigi]

Interesting to read that there are intravenous and pills. Only thought FCR was intravenous! Waiting to hear if doc suggests chemo or Ibrutinib. Both scare me for side effects. Why do we need a port? Can't they use veins in arms since there is usually few weeks in between treatments? Can you get port wet?

[Cllcanada Top Poster CURE Hero in reply to GMa27]

U.S. is stuck on IV, due to issues with pill drug parity... the rest of the world uses fludarabine andd cyclophosphamide pills and has for 10 years. We still have the option of full IV FCR, and it is used in patients that have issues with the stomach etc.. taking the pills...

PICC lines are sometimes prefered over ports, which require surgery, most patients with decent veins just get an IV, but you might enquire about your options.

I have had a PICC line in for 4 months, and get a weekly visit from my community RN to change the dressing and flush the line with saline. I have to shower, with a plastic cover on my arm.. no big deal... Ports are flushed usually every month, it might require a visit to the oncology department. PICCS are simp,y pulled out in a second... ports require surgery to remove...but ports tend to have longer use...

~chris

[GMa27 in reply to Cllcanada]

I didn't know PICC and port are 2 different things. I live in FL. Outside activities all year round... bathing suits, swimming, beach/boat. Which can get wet if any and would make more sense for my lifestyle?

[GMa27 in reply to Cllcanada]

If I get PICC then I can't travel due to needing it flushed every week?

[Cllcanada Top Poster CURE Hero in reply to GMa27]

Ports are under the skin.... but swimming is not generally advised...

With your lifestyle then IVs are probably a better choice... depends on your veins... Cyclophosphamide is a bit corrosive being a nitrogen mustard drug... best discuss this with your hemaetologist.

WARNING.. SURGICAL VIDEOS...

PICC Insertion

youtu.be/9FvUsjje8ic(Not working as expected?)

PORT Surgery

youtu.be/-jWMYh0Y6gg(Not working as expected?)

~chris

[Ohannie236 in reply to Mosaicgigi]

Hi, Mosaic. Good for you to be halfway done! Hope things will go well for you on the downhill and you will have a forever remission. Prayers and love from Ohio!

[Kenn123]

Hi Flabal, I was very bad with nausea but on round 2 onwards they admitted me to receive chemo intravenously. This was better. I did not work as it really did take a lot out of me.

However on the upside: I did not lose my hair so I looked quite normal, those horrible nodes disappeared after round 1 yeah!! and I managed to go on holiday in between rounds 4 and 5.

Good luck. It passes by very quickly.

[Ohannie236 in reply to Kenn123]

So glad for you that you've finished treatment! I just got my port yesterday and am about to begin--thank you for the encouragement in your post. Best to you going forward. Hope you have a lovely summer!

[GMa27 in reply to Ohannie236]

How was port experience? How was first treatment? Or are you on second? Getting port in few weeks. BMB and scans last week.

[Ohannie236 in reply to GMa27]

Hi, GMa27. The port placement wasn't bad, almost zero pain, and it's worked out well. I finished Round 2 this week. Just posted about it. Hope all is well with you. I've had a few glitches (Rituxan reactions and a clot in a surface--not deep--vein that traveled all the way up my leg), but everybody here is right in saying that the fear and uncertainty before treatment is probably the worst part! We can do this! Just look at all the brave folks here who've gone before and are good enough to report back to us that there are better days ahead. So much comfort in their kind dispatches from the future. Arms around you as you ready yourself for Round 1! Love and prayers from Ohio. xo

[GMa27 in reply to Ohannie236]

Thanks! Ur right...I should just try to not get myself worked up. I guess cuz I feel so great where some are fatigued, in pain etc....that I am not looking forward to not feeling good. I suffered from last May till August with gastroparesis. By September I knew what to eat and how to live pain free. Scared about the gastroparesis effect with chemo. I can't skip a meal! 4-6 a day! Will keep positive thoughts as you say. You made me feel much better!

[Ohannie236 in reply to GMa27]

I'm so sorry about your gastroparesis and am glad you've found ways to manage it. Sounds like that took a lot of strength on your part. Having the right nausea meds will help a lot. And then you'll find some foods are more tolerable than others, and just go with that. Your body will let you know what it can handle. I had treatment last Monday, Tuesday, and Wednesday, and today (Sunday) my stomach's pretty much back to normal. Starting to get some energy back too. Just have to rest when you need to. It's normal to feel scared. Me too! (-: I know the waiting part is so hard. But you can do this. Hope you feel everyone's arms around you. There's some seriously strong faith and love here whenever you need it. Big hug to you, GM.

[GMa27 in reply to Ohannie236]

💕

[noeagaman]

Hi IFlabal, I completed four rounds out of six of IV FCR. After round four I became neutropenia and then my platelets dropped to 11,000 and my Hemoglobin to around 7000. They admitted me into the hospital where I got IV immunoglobulin treatment which didn’t help. Then they gave me blood and platelet transfusions which finally helped a little. I’m currently being seen every week while my counts come up slowly. My platelets are now at 64000 but my hemoglobin is still low. Today I got an injection in the stomach to boost that. Luckily a recent bone marrow biopsy shows that the CLL cells are gone. The doctor said no more FCR for me ever.

I did have nausea from the FCR which lasted for the weekend and then was very weak for about a week. I could only eat a few things during that time and drank a lot of Boost and water.

Good luck with your FCR. Hopefully you will not have any issues.

[Ohannie236 in reply to noeagaman]

So glad your CLL cells are gone, and good riddance! Sounds like you've been very brave, and I wish you all the best as you go forward. Prayers from Ohio.

[noeagaman in reply to Ohannie236]

Thank you and I hope for the best for you. Prayers back at you from Texas

[Flabal in reply to noeagaman]

Thank you for sharing. I’m so glad u are better. I hope u will never have to do any bone marrow biopsies. I did onward hated!

[noeagaman in reply to Flabal]

I have done two of them and did not think they were that bad. Maybe it is my military background that helped with that...