Just a quick question re fcr

[dandelup]

Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment

[dandelup]

Thank you for your reply I am on the Flair trial and to be pretty honest fcr was not what I wanted but after a nights sleep I am now ok about it at least 6 months it will be done so just going to be positive and face it full on .

[AnneHill in reply to dandelup]

Hi, I had fcr over 7 yrs ago. It was tablets and the Retuximab was introvenus. No picc line. Im glad I had it now. It was over in 6 mths. It is coming back now and I will have Ibrutinib. If you have prob taking all the tablets with water, its better with milk if you like milk. Good luck, Anne

[dandelup in reply to AnneHill]

Thank you , I am sorry it has returned but Ibrutinib has great results so wishing you all the very best

[dandelup]

Thank you fingers crossed but I am sure I will get through it. Are you now in remission?

[Gailandbert]

Hello

My husband did not have a picc line .

Really hope it goes well for you . He finished in March - please feel free to pm me and ask any questions you have.

Good luck - it will soon be over .

Gail

[dandelup in reply to Gailandbert]

Thanks Gail maybe I can continue playing golf after all then

[Gailandbert in reply to dandelup]

Definitely

My husband worked all the way through. He took 1 week off a month for the treatment. Not for everyone I know , but it helped him . Gave him something else to think about.

He is now MRD negative. It will definitely come back as he is unmutated, but for now he just lives a normal life .

I gave a short talk at the Bristol Conference on FCR :

Keep an over night hospital back packed

.

Buy an ear thermometer ( more accurate than oral).

Be near your hospital on days 5 to 12 of the chemo . Phone the helpline if at all concerned.

Drink masses - of anything you like . Just drink .

Eat - even when you can’t face it . One tiny square of toast really helps .

Write a diary- including what you eat and drink ( only the chemo week ) .

Make a pill chart . Tick off the different pills with a different colour pen .

Take the anti emetics before you need them .

Take a picture of the hospital card so it is easy to find on your phone .

Thinking of you . It will go really quickly

Keep well

Gail

[Newdawn Administrator in reply to Gailandbert]

Excellent practical advice Gailandbert!

Newdawn

[sandybeaches in reply to Newdawn]

Is there any way in which all these wonderful suggestions can be put together where people who are going to have some type of IV Chemo can access them to review before their treatment?

One suggestion about keeping an overnight bag packed in case of a hospital emergency admittance is excellent and one that I have never read about.

Sandy Beaches

[AussieNeil Administrator in reply to sandybeaches]

Any member is welcome to collate these very helpful suggestions into a new post - just has PaulaS has done here: healthunlocked.com/cllsuppo...

It would indeed make for an excellent pinned post - one that is well overdue

[Havemercy in reply to Gailandbert]

One more thing (probably for us ladies! ) make sure you are wearing baggy leggings and pants you can easily manipulate with one hand when you need the loo for the days when you have infusions. Even though I should have known (being a nurse) how tricky it is one handed !!!

[dandelup in reply to Gailandbert]

Thanks Gail great advice will definitely carry out all your suggestions

[devonrr]

UK specialist chemo unit. Nurse calls you from the waiting room. Someone can go with you but no children.

Choose a chair, most look like armchairs.

Round of questions and labels.

Heat pad put on the arm of your choice.

After a while a cannula is fitted into the outside of your forearm. If a problem getting a vein they will use the outside of your hand.

Saline drip first then the magic juice.

At end cannula is removed.

Awaiting game. Take something to do. Sleep is normal.

You can turn the machine off and trundle to the loo with it.

First time is scary but the nurses will know that and look after you.

Feeling peculiar in anyway tell the nurses.

Very boring for anyone going with you but you need them for a lift the first time.

You meet some nice people in there all having different treatments.

[dandelup in reply to devonrr]

Thanks very helpful

[devonrr in reply to dandelup]

Oh forgot. They will put steroids and antihistamine into the cannula at the start.

Steroids are fun because they give you that ants 🐜 in your pants moment for a few seconds.

[dandelup in reply to devonrr]

Oh will look forward to that here’s hoping I don’t feel too rough after it

[AnneHill in reply to dandelup]

The first treatment I only had the tablets and introvenus retuximab 2nd month. On the morning I had the tablets in front of me and was scared. I didnt know what was going to happen when Id taken them. I rang my daughter who lives close and she came round and spent every day with me. She had a new baby! Nothing happened! Its so funny now because she wouldnt let me even make a drink, lunch etc. She thought I should rest so that the drugs could do their thing. As time went on I did feel sick and asked for different anti sickness meds which helped. It wasnt that bad. And It Worked! Complete remission. Good luck, Anne.

[dandelup in reply to AnneHill]

Thank you Anne glad your well I hope I can say I am in remission in six months time

[AnneHill in reply to dandelup]

Im going for a colonoscopy tomorrow and today I have to drink discusting laxatives and tons of water. No food today until mid aft tomorrow. Prospect of hours sitting on the toilet. Im being a real baby. To tnink I have been through chemo and surgery and Im more nervous about this.

[Bubnojay in reply to AnneHill]

Oh I feel for you and going through the purging, one of the nastiest of experiences. An intimate view of the smallest room is no recompense.

Soon be over and I hope your resultant news is good.

In sympathy

Bubnjay1

[MsLockYourPosts Passed Volunteer in reply to devonrr]

If someone is going with you tell them to bring something to keep them busy. A friend insisted on going to one of my treatments. After the IV Benedryl hit I always felt pretty loopy and just wanted to sleep (normal for most people).

With a friend there, who didn't bring a book, or knitting, or anything to entertain herself, I felt like I had to stay engaged with her. Awkward at best. Also, bring a couple of different things for yourself. If you find it hard to focus on one thing, it's nice to have something else to occupy your time.

[noeagaman]

I had a port put in, but I get my care at a military hospital. They seam to take every precaution. It came in handy though when my fourth round of FCR caused me to go into the hospital for a week. The daily blood, platelet and IVIG infusions were easy for them to do. I finished FCR in February and still have the port in. I get monthly IVIG's and they use it for that. My doctor said that some people leave them in for years. We'll see...

Good luck with your FCR treatment! I hope that it all goes smoothly for you and you get a long remission...

Chris

[dandelup in reply to noeagaman]

Thanks Chris much appreciated

[gardening-girl in reply to noeagaman]

Hi Chris, I'm one of the ones that your doctor talked about. I've had a port since 1997. I love it! First it was used for chemo, now for IVIG. It doesn't bother me at all and accessing it is so easy for the nurses.

[Justasheet1]

D,

I don’t think that they will do a PIcc line automatically. I had a port put in and it made it very easy BUT it required a surgery to place it.

I had it removed after completing treatment as it needs to be flushed monthly and I was ready to enjoy my remission.

The Iv benedryl given before treatment made me sleep through the infusion.

I had a reaction (rash) from the Rituxin during the first round but nothing after that.

What are your prognostic markers?

Jeff

[dandelup in reply to Justasheet1]

I think I am luck I am mutated and no deletions

[Justasheet1 in reply to dandelup]

Well, if what they keep talking about is true, you may have a long remission God willing.

I’m wishing you great success.

Jeff

[dandelup in reply to Justasheet1]

One can only hope but I feel very positive hope I still do after my first session

[Justasheet1 in reply to dandelup]

Follow Gailandbert’s advice. Spot on.

[dandelup in reply to Justasheet1]

Yes I intend to

[PCara90]

Best of luck to you dandelup!! I too will begin treatment next week and have picked up some great tips here. Thank you to everyone for the great advice! (I plan to try the pill chart idea now, Gail. There's so many meds to keep track of!)

I have made my peace with having to start treatment and am now just ready to get it done! If you're feeling up to it, please keep us posted here on your progress.

[dandelup in reply to PCara90]

I will keep posting updates good luck to you too are you having fcr?

[PCara90 in reply to dandelup]

I will start FCG -- different but very similar all the same. The FC is the same but it will be combined with Obinutuzumab (aka Gazyva) instead of Rituximab. I'm participating in a trial that will throw in Ibrutinib as well. I may glow in the dark around this time next week!!

I too hope to post updates throughout my treatment. Here's hoping we both have nothing but success to report!

[dandelup in reply to PCara90]

Good luck to you I hope you have a calm and easy passage through your treatment, I will be thinking of you .

[su14]

Hi dandelup,

I am in the US and received FCR in 2015. I had a port inserted just prior to (three days) starting my 6 month course of FCR. Although many people manage their treatments with PIV (peripheral intravenous), often times the head and arm veins become difficult to access over the long term.

A PICC (peripherally inserted central catheter) can be inserted for longer term use, however this device also has an external access point. (The catheter tubing is taped down in a similar fashion to at PIV) The catheter is covered with an occlusive, transparent dressing that requires a certain amount of care. (periodic dressing changes, careful showering). This is inserted by specially trained medical staff in a clinic, hospital or radiology setting using sterile technique.

An implanted port is inserted under the skin, with the catheter inserted into a central larger vein. Once healed, it is completely covered by your own skin (no dressings or showering/swimming restrictions) The medical personnel who access your port have received additional training in the proper technique/care of this device. My port was inserted by a surgeon in a same day surgery center. It can be inserted and used immediately, if necessary.

After completing FCR, I began receiving IVIG (intravenous Immunoglobulin) every month. I am now receiving IVIG every other month and am thankful to still have my port for dependable access. (fingers crossed)

I hope your FCR adventure goes well across the pond.

Best,

Su

[Fran57]

Hi.

My husband had FCR almost three years ago- you'll be fine, I'm sure 😉 (We're in the UK)

I made a chart for the medication too; it really is a great help and if you need to call and ask for help, it proves very helpful to the nurses and doctors too.

Paul was just very nauseous and a bit sick for about 2-3 days each time - take the anti nausea tablets before you feel sick.

Best of luck!

Fran ☺️