Cycle 1 of BR compared to FCR, and any advice regarding Port v. PICC line please?

I had 5 cycles of FCR four years ago, and although the nausea was dreadful, I didn’t miss a day of work as I’d timed the treatment each month to start the day before my two long days of piano teaching at the local primary school. By the time my second day's teaching was ending, the nausea would kick in, and I’d get myself home and then not move or eat for five days, recovering in time for work the following week. I lost half a stone in weight each cycle from my normal weight of just over 8 stone, and although I begged my consultant for an anti-emetic syringe driver he insisted I wasn’t taking the anti-emetics properly and so it was my own fault that I suffered so much with nausea. Finally on my fifth (and final cycle of FCR) he agreed to the syringe driver, and I basically sailed through the treatment that month with not even a hint of nausea! His response when I saw him a couple of weeks later was ‘What a shame we didn’t try that sooner’.

Anyway, I started my first cycle of BR last Monday (12th January). I’d been told it was a lot gentler on the system than FCR, and so it was with a mixture of hope and trepidation that I began the treatment.

Day 0 - Rituximab infusion all day. The nurse managed to get the cannula into a vein on her first attempt, and all went well, until towards the end when I had a fit of shivering and chattering teeth, and so they gave me an extra dose of hydrocortisone which soon sorted me out.

Day 1 - Rituximab until mid-afternoon, and then Bendamustine for 1.5 hours. Unfortunately two nurses had four attempts with cannulating my veins before any success. The backs of my hands were well-bruised and battered, and I felt sick with pain.

Day 2 - Two bags of blood (my HB had dropped to 5.9) until mid-afternoon, and then Bendamustine for 1.5 hours. In spite of the fiasco the previous day with cannulating, today there were five attempts to get into my veins (three different nurses) with one vein popping on my forearm. I asked the nurse just how many attempts until you call it a day, and she said ‘Oh, we’ll get into a vein don’t you worry!’

I had to come back again on Friday morning for two further bags of blood, and my daughter phoned the day unit on Friday at 8am and said I was in no fit state for any further treatment. I hadn’t eaten since Tuesday night because of extreme nausea (my consultant had put me on a cocktail of three different anti-emetic drugs, but they unfortunately didn’t do the trick) and I was now full of dread at the thought of any further cannulations, and very weak and tearful. They insisted that I come in though, with the promise that they would anaesthetise my veins before going into them (why hadn’t they offered that on Tuesday and Wednesday?) and the warning that if I didn’t go in, I’d probably end up in A&E over the weekend with less experienced doctors attempting to go into my veins. When we arrived at the day unit, the nurse asked if I had ever seen the consultant psychologist at the hospital regarding my anxiety about cannulating and chemotherapy (I’d avoided BR as long as possible, in the hope that Ibrutinib might become available). I was too weak to reply, and my daughter meanwhile wanted to punch her lights out, because the nurse had implied that it was my fault for being such a worrier. We should have asked her who on earth goes into chemotherapy willingly and joyfully, especially when they’ve been through it all before, and how would she feel if she had been repeatedly stabbed in the veins!

So another 8 hours spent in the hospital on Friday having blood transfusions, and at the end of the day, they said they had decided to fit me with an anti-emetic syringe driver. Hooray! Except the nurse who fitted it did it wrong, so throughout Friday night I had the syringe pumping doses of the drug into my damp vest instead of my tummy. Saturday morning I was exhausted, feeling incredibly sorry for myself and so nauseous. The district nurse came round and sent me off to shower while she sorted out my syringe driver and got the thing working correctly. She was my saviour to be sure, and had a wicked sense of humour too!

I emailed the Macmillan Haematology Nurse asking if I could have a Port installed as I really couldn’t bear the thought of any further cannulating - my veins are useless at the best of times. The response is that they can either do a Port or a PICC line, but they are leaning towards doing a PICC line. Does anyone have personal experience of either of these or preferences of one over the other?

So at the end of cycle 1 of BR, I would say FCR was a walk in the park in comparison. I’m a youthful 56 and have always had bags of energy, but what has really knocked me for a six is the utter feeling of exhaustion that I feel - an almost out of body experience which remains with me more than a week later, and my stomach is still not completely recovered yet. Needless to say I had to cancel all my teaching last week, and I’ve been told to go back for yet more blood tests tomorrow morning as my platelets had dropped to 19 last Friday...

Ruhi9

14 Replies

oldestnewest
  • First off, I vote for a port called a powerport. I have one because I have such a needle phobia.

    I am going for round 6 of BR soon. The fatigue and nausea lasts me for a week with or without antiemetics.

    Good luck and remember, "the mission is remission ".

  • Hi Ruhi,

    Sorry I don't have any experience or advice re ports or PICC lines. However, I just wanted to say I was so sorry to hear about your experiences last week. I can understand how exhausted you feel.... Hopefully you'll start to feel some benefits from the treatment soon...

    thinking of you,

    Paula

  • Hi Ruhi,

    What a horrible time you've been through. Thankfully you've have the support of your daughter during venerable times. I've not had treatment yet and only hope that when I do, it's better than the experience you described. It must be so frustrating to not be heard and then disempowered.

    Hope your back teaching soon.

    M

  • Yes, I too am sorry to hear what you have had to endure. I have no advice to give on ports, etc.

    But, a big thank you for sharing your experience here. As the carer of someone with CLL who has

    not had ( but needs ) treatment, the warning bells you have pointed out are so valued.

    I hope all improves for you.

  • That sounds pretty bad. I have poor veins too - one nurse said they look nice but they roll - and got poked 6 times for my last CT scan before they found a vein. I had a PICC line put in Sept and had it until a few week ago. The procedure to install the PICC line was very easy; painless except for some minor pokes to put in some freezing. Afterward, there was no soreness at all and the PICC line was hardly noticeable during daily activities. The PICC line really help me to avoid a lot of anxiety on how many pokes it would take to get an IV line into a vein.

    I haven't had a port but I got "upgraded" to a Hickman line two weeks ago. That procedure was more involved and there were a few days of discomfort afterwards. I find the Hickman line is more noticeable - it is not really bothersome but does require a bit more care. For me, the only advantage of the Hickman line has been that it allows fluids to be pumped in a bit more quickly because the tubes are larger.

    Best of luck,

    Ken

  • I'm a vascular acsess nurse also with CLL. I insert PICCS. It has it's positive side, less invasive but also has it's limits. You cannot get the dressing wet, have to cover the PICC for showering. Dressing change every 7 days or per protocol. Cannot lift heavy objects, cannot swing arms around if active. Has a risk of clotting, and developing a blood clot in the arm of insertion. It depends how long you need it. If it's a short run a few months than a PICC is good. A port a catheter for long term is a better choice. I know people whom have had theirs for years. They do need to be flush with Heparin every 30 days. Important to ask your doctor if your counts are low. As a procedure nurse we assist in port insertions often using moderate sedation. If it was me, I would want a port. After the incision heals you can take showers but still need to take caution with activity but you have more freedom. The power port means you can get a CT with iodine contrast IV as it injects with pressure.

    I'm sorry you were treated with disrespect. Disgrace to my profession that nurses can be so insensitive.

    Take care

  • Hi Dottie,

    Thanks for your in-depth reply. They’ve decided to go for a PICC line as my BR treatment should hopefully be just another 5 cycles.

    My blood test last week was good news - almost everything had improved seven days after completion of my first cycle of BR:

    WBC 132.7 to 4.9

    Lymphocytes 131.4 to 4.5

    Haemoglobin 58 to 98 (bear in mind that I did have two days of blood transfusions)

    Platelets 19 to 30

    Neutrophils 1.3 to 0.2

    Because I’m now neutropenic, I was warned to avoid salads from restaurants and cream cheeses and live yoghourts because of the added risks, and of course to avoid crowds and being around sick people.

    I was given an appointment for insertion of a PICC line this Wednesday. The nurse said it’s the least invasive treatment and most commonly used by health carers, so should hopefully present no problems. I’m to have a blood test at 9am followed by the procedure in the Xray department as soon as the results come through.

    My only worry now is that with such a low neutrophil and platelet count I have a far higher chance of becoming infected or bleeding! I’m tempted to tape the warning card that I’m neutropenic to my forehead, and wear a white mask so they can’t ignore my condition!

  • My wife had six rounds of chemo for breast cancer. The first two were excessively miserable because of problems accessing veins. She was offered a PIC line and, apart from the two attempts needed to insert, it really made the chemo process itself a straightforward event which she had previously dreaded.

    It did need the dressing changed frequently which, after instructions from the nurse, I did at home for her along with the anti nausea injections required for the few days after chemo sessions.

    As for nausea after chemo, she really didn't suffer like the other women going though chemo at the same time. She attributes this to sticking to a healthy and plain diet for those few days after chemo and going for daily walks.

    Mike

  • You certainly had a rough time and I don't blame you for delaying. Since all treatment I receive here in US for FCR is IV, I was advised to have a port placed. I spoke to the cancer center nurses and they advised a port over a picc line. They stated Picc lines give them problems at times and ports must be flushed more often to maintain patency. An unused port only needs to be flushed monthly but it's placement is a surgical procedure here whereas a picc is done in interventional radiology. I will tell you thought that ports can also have issues. They have had trouble getting a blood return to begin treatment when it has not been accessed. Nurses said it is probably due to a fibrin sheath forming at tip of catheter. They have been able to get the blood return by changing my position or running fluids for a few minutes. Another consideration is that with the picc- the tubing is simply attached and treatment is administered, With a port there is still a needle stick as port is implanted under skin in chest. The needle stick doesn't bother me and I am given the option of leaving it accessed for all days of treatment. They just cover it with a dressing but I can't shower so I usually leave it in day 1 then remove it on day 2 so I can shower then repeat same thing for days 3 and 4. For me the port has been a great idea. Also blood work can be obtained from both the picc and port. Good Luck and I'm sure things will improve once you have easier access to receive treatments . Joan

  • Hi Jomary,

    Thanks for your reply - it sounds so confusing when you bear in mind all the possible complications of either procedure.

    My blood test last week was good news - almost everything had improved seven days after completion of my first cycle of BR:

    WBC 132.7 to 4.9

    Lymphocytes 131.4 to 4.5

    Haemoglobin 58 to 98 (bear in mind that I did have two days of blood transfusions)

    Platelets 19 to 30

    Neutrophils 1.3 to 0.2

    Because I’m now neutropenic, I was warned to avoid salads from restaurants and cream cheeses and live yoghourts because of the added risks, and of course to avoid crowds and being around sick people.

    I was given an appointment for insertion of a PICC line this Wednesday. The nurse said it’s the least invasive treatment and most commonly used by health carers, so should hopefully present no problems. I’m to have a blood test at 9am followed by the procedure in the Xray department as soon as the results come through.

    My only worry now is that with such a low neutrophil and platelet count I have a far higher chance of becoming infected or bleeding! I’m tempted to tape the warning card that I’m neutropenic to my forehead, and wear a white mask so they can’t ignore my condition!

  • I feel the same way-like taping a sign on myself to inform others. I actually started to get a little obsessed with getting sick/infections. I finally told myself I need to take the proper precautions and inform others but I can't be 100% in control. I had started to dwell on every complication. I now just try to take it step by step and deal with what comes. I had myself so upset over the possible complications of FCR and to date have had very little if any side effects other than the low WBC and ANC. Good luck with the PICC insertion- I'm sure it will help with treatments. I'll be thinking of you! Joan Mary

  • Oh dear ruhi

    Hope things start to get better for you from now on.

    Best wishes

    Sue

  • You poor thing. That sounds shit. I had six fcr in 2007, five in 2012, and bendamustine three times in 2013. I did find br more tolerable than fcr. But it wasn't any less depressing of an experience! Maybe your veins are difficult due to such low haemoglobin. I avoided a pick or port line. I am only 46 now if that makes any difference. The only thing I did find was my vein went hard....a lump. They're fine after about six months. I only had three months of br.

  • Thank you for all your replies, and I’m so sorry for not replying sooner, but it’s taken me all of two weeks to feel fully ‘back to normal’.

    My blood test last week was good news - almost everything had improved seven days after completion of my first cycle of BR:

    WBC 132.7 to 4.9

    Lymphocytes 131.4 to 4.5

    Haemoglobin 58 to 98 (bear in mind that I did have two days of blood transfusions)

    Platelets 19 to 30

    Neutrophils 1.3 to 0.2

    Because I’m now neutropenic, I was warned to avoid salads from restaurants and cream cheeses and live yoghourts because of the added risks, and of course to avoid crowds and being around sick people.

    I’ve also been given an appointment for insertion of a PICC line on Wednesday. The nurse said it’s the least invasive treatment and most commonly used by health carers, so should hopefully present no problems. I’m to have a blood test at 9am followed by the procedure in the Xray department as soon as the results come through.

    My only worry now is that with such a low neutrophil and platelet count I have a far higher chance of becoming infected or bleeding! I’m tempted to tape the warning card that I’m neutropenic to my forehead, and wear a white mask so they can’t ignore my condition!

    Ruhi9

You may also like...