hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of treatment, I started on acalabrutanib but after 1 week had to stop due to severe bone pain , so severe I couldn’t get out of bed or a chair , was told nobody has trouble with this treatment. I had to change my hospital due to starting V& R as the amount of visits to the hospital was 3 days every week for 5 weeks 1 very long day 9am - 7pm other 2 days supposedly just half days . This hospital very unorganised and no communication. I had a echocardiogram on 16th june spoke to my nurse that day to say was told all information would be there for the specialist that day she would tell him by email so he would see it Monday 19th said please let me know out come ( was anxious as had just found out on the 14th June I had an enlarged heart ) rang left message Tuesday & Wednesday Nothing on Thursday late afternoon I receive a phone call from a sister from Ambulatory unit to say sorry could she change my Monday 26/05/23 at 11am to Tuesday 27/05/23 at 9am to have my Picc line put in as you can imagine shock horror what appointment she was taken a back as thought I know so that’s the start of a real mix up and disasters of this week to the point of myself ( really easy going personality) refusing to give bloods and ready to take picc line out myself . Tuesday they took bloods before outing picc line in ( told should have been the day before to have this but wasn’t told ) so Wednesday start Ventoclax so attached to drip for to hydrate me through for 6hours then to take bloods 10am 2pm and 6pm . Took the first one came back at 12 to say it had Hemolyzed need to take it out of my arm ??? Already black and blue in left arm where they took the day before and also in that arm from picc line put in so stated that I had this picc line put in to stop me being stabbed every day numerous times didn’t have one put in for FCR so every time they took bloods from my picc line it hemolyzed so ended up there till 9pm and 5 puncture wounds in my arms . Is it right that it will Hemolize from a Picc line do I need this in ???? I had all my treatment through cannula last time . Sorry for my long drawn out Rant but this is just the half of the troubles I had over 3 days and have to go through this again next week , I’m very high risk of TLS thank you for reading
PICC line or not : hello every one I read every... - CLL Support
PICC line or not
Hi, I can’t help but I am hoping someone with more knowledge will. Wishing you all the best
I have simalar experience. At the start of the treatment with O. they offered me the choice of having the PICC line if I wanted it. After one month of weekly O. infusions they suddenly decided to give me the PICC line. Because of lack of communication I was not prepared. After they put the PICC line in, they told me that it needs to be cleaned every week in a different town...miles away and that my weekly O. treatment would now be once a month.
They also hid the side effects of the PICC line when asking me to sign the concents form.
But when I asked to remove the PICC line the consultant told me that he might have to stop the treatment of O. infusions.
Btw...I don't have any side effects from either the O. infusions nor the V. tablet so far. My blood tests are great.
So...can they stop the treatment if they remove the PICC line? There are no problems with my veins yet.
I wish I had refused to accept the PICC line at the beginning.
they stated I now can have it removed if I want but retuximab would be put through it which ment no cannula each time , but will have to have blood tests each time Grrr it’s a nightmare as I’m allergic to elastoplast any realtor sticky tapes micropore is fine but no good on a picc line so first cover lasted 1 hour this they have put on is nearly ripped off as it’s driving me mad been to local chemist nothing have to go to my drs see what I can get thanks
I didn't know there could be problems with hemolization. Are they doing the draw using a syringe or vacuum tubes? Are they drawing enough discard blood to check patency before the sample?
I was/am "high risk" TLS. During work up I had about 6 blood tests, 3 were dry stick so 9 punctures. The ones that drew blood on first strike were fine. All the dry stick and second strikes produced a bruise at both punctures. As the blood tests were about a month apart the bruises healed before the next blood test. Prior to this I had had one blood test in my whole life, I didn't know it wasn't normal.
On V+O, until cycle 3 every Monday was a blood test, consultation on Tuesday, infusion and/or V ramp-up on Wednesday.
First O was on a ward due to high risk TLS. They read across to the V ramp up so 5 blood tests first day, 1 was for an IRR, 5 second day and 1 more on day after before release. There had been a dry stick blood test 3 days before going on ward with 2 bruises. Half the blood tests on the ward were dry stick, all produced 2 bruises. The score was 18 punctures, 12 bruises for 12 blood tests, I was all colours of yellow, black and blue. There were also two cannula, one produced a small bruise that surfaced 5 days later.
Consultation before the day 8 infusion I was diagnosed as having "fragile veins". I asked for a PICC line, it was installed the day after and the 24 hr re-dressing was done before the 8th day infusion. I refused the take home bag of dressings, saline, heparin etc as I was going to have the dressing changed by a nurse when the Monday blood test was taken from the PICC.
Being "high risk" TLS I was on a ward for 20mg and 50mg Venetoclax. 6 blood tests on each stay. One was a draw from the back on my hand as the PICC was in use for IV fluids, all other blood draws were from the PICC. It did day 8, day 15, cycle 2 and 3 infusions of O and about 30 blood draws, so probably saved me from 15 dry sticks and 30 bruises. I refused the 4hr blood draw for V while PICC was in use for cycle 2 IV of O and sent the nurse away until the IV finished about half hour later.
I had the PICC line removed on Friday after the day 1 cycle 3 infusion of O. Blood tests are now every 28 days and the 3 dressing changes it would need in between blood tests would have had to be done at home by the district nurse. For me this was "high maintenance" so out it came. There was some resistance from the CNS team, it took about 4 E-mails to get an appointment for PICC line removal but I had forestalled this by not having the take home bag of supplies for the district nurse.
The blood test for cycle 4 went well, single dot at puncture. The IV cannula for 6th infusion of O was fine as well. There are 9 more blood tests and 2 infusions, I'll live with the risk of 8/10 more bruises between now and next March.
There was one blood test that had problems filling the vials, they took the blood using a syringe. There was also a problem with one IV of fluids having high back pressure, that was solved with a saline flush from a syringe,
After every use of the PICC line it was saline flushed and heparin blocked even if it was going to be used within 24 hours. Some of the saline flushes were not quite as pulsile as the demo when the PICC line was installed.
Scottish NHS has a protocol for using a cannula for frequent blood draws. This can only be used on a ward or for one day as they don't allow people to go home with a cannula.
nhsresearchscotland.org.uk/...
If I wind up on a ward with sepsis and I still have any wits left I will be asking them to follow this procedure if they need more than one blood test a week. They will have had the first one at triage in CTAU.
PICC line was excellent for me during the first 2 cycles of V+O, I had no problems. It would have been nice if they had told me about the number of blood tests they were going take on 1st infusion as I would have had a PICC for that.
It's maintenance would be a bind for infrequent use once or twice a cycle, after the cycle 3 infusion and end of Venetoclax ramp up.
Frequent bruising probably means that like me you have fragile veins. They are normally allowed two goes before getting another nurse to take a draw. With fragile veins I believe they are only allowed one go. You can also refuse to be attended by any nurse you recognise that has taken 2 goes or bruised previously. I'm now quite prepared to take names and photos of the damage, so I will have evidence when I say, "Not you!".
I met someone on a ward that had had sepsis twice, both times from the PICC line.
it was done by vacuum just take cap off and attach the vile 2 or 3 taken they should have taken 1 hr for result 3 hrs later on 1 occasion to be told it had hemolized Grrr so back they come with intention of using a syringe why put in the picc line if I’m a human pin cushion . It annoyed me on 1 occasion I allowed them to use a syringe and it still came back hemolized ?? It has to be the Lab that’s at fault . I will be on week 2 ramp up to 50mg of ventoclax on Tuesday and I am adamant they use the picc they will flush it first then draw some off to discard then take there samples as it won’t have been flushed since Thursday , I’m not a nurse or dr but I’m just the cancer patient that is really fed up I have been use to my previous hospital and specialist giving me as invasive treatment as they possibly can and all care given with care and giving me all information as and when things will happen this hospital is so unorganised it’s unbelievable. I am supposed to have a designated Nurse who’s phone no I have only 1 problem she doesn’t reply so have told them and her that I won’t be contacting her if I have a problem or I need advice. Rant over thank you
At least on a ward you are there.
Week 3, 4 and 5 of Ventoclax ramp up 100mg, 200mg and 400mg I was in specialist outpatients (the cancer unit) for test and wait. Took tablets at 7am at home, 6-8 hour blood test at 2pm. They never managed to get results to send me home before 5pm, even when the staff nurse was there waiting for me to take the sample promptly at 2 pm and walked the samples to the lab herself. She was sure it only took an hour to get blood test results but had to admit I was right and there was a risk that I could still be there when they closed. Specialist outpatients closes at 6pm, combined daycare next door closes about 7pm, I left at 6:50 pm after day 8 infusion, they had to unlock the door to let me out. I have no idea what they would have done with me if the test had to be repeated, they wouldn't have results until 8 pm. The 24 hr blood test the next morning was at 9 am and results would be well after 11am, I was taking the 2nd day tablets 5 hours late.
Have you been given a TLS warning card? I had to print my own. The consultant had never seen it before. (hint of course you are a healthcare pro!)
Unfurtunatly they can't do blood draws from the PICC line at the Hospital Phlebotomy department. The Nurses aren't trained. Putting the PICC line in after the whole month of weekly O. infusions and now only having it once a month doesn't make any sence. I still have to go to the Phlebotomy department for them to take my blood.
I was getting blood draws from PICC line and dressing changes by the nurses in specialist outpatients (cancer). They took the sample in one of the rooms that they use for platelet and other transfusions. On bank holidays it was in the combined daycare unit where PICC lines are installed and bays with chemo chairs are. The ward staff were OK with draws from PICC line but couldn't do dressing changes.
As you say a PICC line is too much trouble once you are on 4 weekly blood draws.
Can u get a port? I liked mine for FCR. Very easy to use. Low maintenance. Gets flushed every 12 weeks or when used for treatment. I had it removed 5 months after treatment. Some keep them in for years just in case. My hematologist office doesn't use it for routine blood draws since they would have to have a port nurse on staff all the time. So I had it taken out. I wish you well. You have been thru a lot.
what is a port please I’m very interested
mskcc.org/cancer-care/patie...
my.clevelandclinic.org/heal...
Do a search on "Port a Cath" for pictures of common ones, I can't upload pictures for some reason.
I have had a double lumen port in my chest for the past 20 years and I love it! My first port was installed in 1997 in advance of FR treatment, but it clogged and needed to be replaced in 2003.
mskcc.org/cancer-care/patie...
I will ask about them would think I would have had to have it fitted before treatment thank you
As previously stated, it is inserted by quick 10 min procedure. Under skin n the chest area. You can get it wet, gets cleaned/ flushed out every treatment & then after, every 12 weeks. I had it removed 5 months after remission from FCR chemo. Saves veins & keeps hands free. Look into it. So much better than PICC.
Sorry you are having all this trouble. My blood started to hemolyze around cycle 3 of O+V treatment. I had to endure about 5 attempts to put the cannula in for cycle 3 if I remember it correctly, never had issues before. The nurses said it happens because of the O and my consultant explained that the veins just start packing up because they had enough basically...it was very stressful as every single cycle afterwards was the same issue. Luckily though I had a skilled nurse who started prepping me every time, I had to make sure I was well hydrated (at least 2l of water before being cannulated, I had to keep myself warm so I would dress well and drink hot tea, had to dip my arm in a bucket of hot water...with all of this in place, the blood wouldn't hemolyze and it was usually only 2-3 attempts to get the cannula in. I was always so tensed before the O infusions because of this which probably didn't help but having the same skilled nurse was crucial. Some of them were just "butchering" me...so I'm not sure - maybe having it will be a blessing in disguise for you? Hopefully things will settle. I was adamant that I would refuse having one of the nurses to look after me again, politely of course. Hope it gets better soon. Sorry you are going through this. The bruises can be terribly painful. Hope you figure out what works the best for you.Petra
Combined daycare unit that does chemo infusions used a warm heat/cool gel pack to warm the site they put the cannula in for my 6th infusion of O on cycle 4. I'd seen them before but I had a PICC line and didn't know why others were getting a heat pack while I wasn't. On the ward and for CT scans they just put the cannulas in but that was before any treatment.
So very sorry that you have had to go through all that. I have been fighting my Lymphoma for the past 12 years. I have hx of aggressive Follicular NHL but have had many treatments (and side effects similar to this CLL group, Especially with the Ibrutinib that I was on off label for my lymphoma. So that is why I belong to this group. Were you ever given a PORT? Even with my PORT, I have still had PICC lines when INPATIENT for my CAR T trial and for the VIPOR immune therapy trials that I had after CAR T failed . I live in the US. My port has really saved my veins from damage with all the trial bloodwork that I routinely get. Plus, they use my PORT for my IVIG treatments that I get every other month since I have no B cells left due to the CAR T trial. I was not allowed to keep a PICC line when outpatient,but only had it for the CAR T trial ( 9 days inpatient) and the VIPOR trial (12 days inpatient). the Tubing was changed about every few days when inpatient. And they often changed the small device on the opening and also scrubbed it religiously with alcohol pads before accessing with IV or needle.The trial hospital used the PICC line instead of my PORT for infusions of my re engineered T cells during the CAR T trial and also for the infusions (when inpatient) from the VIPOR immune therapy trial. And they said they would use my PORT if needed during an emergency. My PICC line was kept very clean by the nursing staff. It is no fun to have a PICC line put in for sure. My trial hospital (NIH in Maryland) did not want patients going home with PICC lines as they can be great sources of infection if not cared for properly. Sorry that I cannot give more information about if your docs will continue your treatment with no PORT. Some of these IV meds used for chemos and even Immune therapy are extremely toxic to the Veins. Best wishes for HEALTH to you! As a note: I had a 3 year CR from my CAR T, relapsed then and my aggressive FNHL transformed into a more aggressive DLBCL type of NHL. So, I then had the VIPOR immune therapy trial and am presently in another 35 month CR thanks to that VIPOR phase 1 immune therapy trial.
thank you wasn’t offered a Port the rang to alter an appointment I didn’t even know I had as no communications. I hope things go well for you .I’m dreading week 2 because every thing was not sorted properly, I like to know what’s happening and when I understand if results are bad there might be extra infusions or admittance but telling me I should have been there the day before to have blood tests when I hadn’t been told is just not acceptable. I didn’t have this when I had FCR it was all organised I got really poorly but managed to stay at home so hopefully that might be the same this time . Thank you for replying
Quite strange as UK once installed they encourage keeping the PICC line for at least the first 6 cycles until the infusions are over and up to 12 months. A PICC line is about 40-45cm long and goes in a vein from upper arm to near the heart. The line stays in place the whole time. When blood tests were at least once a week they changed my dressing and the needle free port at the same time as doing a blood draw. When blood tests are once per cycle we have a district nurse that can visit at home to change the dressing, flush and re-block the line once a week. But I had it removed as I want to go swimming.
They don't allow cannula (short tube into vein) to leave the hospital.
Gosh, this is so agonizing. Unfortunately oncologists, Oncology nurses are more focused on efficient access to veins, for whatever purpose. the may have limited experience with and access to various methods of vascular acess.
Each has its pros and cons, all destroy veins, in time. so really important that they be selected, used in sequence to optimise your veins over time.
So there are; vein sticks, metal needle each time, plastic IVs, PICC lines, Ports. And various catheters.
Long story short, would opt for shortest duration access, in distal vein( ie hand then forearm etc.).
Without ticking off your provider, best to find a person comfortable with all methods and willing to do whats best for you. A vascular surgeon, sometimes.
Good fortune.
Excellent advice on how to maximise how long your veins will last. I agree that nurses prioritise their ease of inserting a cannula, which pretty well invariably means you end up with having to keep your arm out straight for the length of the infusion or have the flow cut off whenever you flex your elbow.
Yes, it's "best to find a person comfortable with all methods and willing to do whats best for you." I've never had nurses object when I've specified what best suits me. That might mean a delay while the local expert is located to do the insertion, but it's definitely worth making the request.
During a long hospital stay when I was spending about half of each day on IV antibiotics, etc, I wasn't given the option of a PICC line or other semi-permanent option because my severe neutropenia was considered to make those options too risky.
Neil
Today the Nurse at the Chemotherapy Day Unit removed the PICC line.
She told me that my veins are very good and there would be no need for a PICC line.
Treatment is going also very good....no side effects yet. I started with 50mg V. today
and had my O. infusion today... cycle 2....
My veins are "very good". I was told this the day before getting a diagnosis of "fragile veins" when I had a blood test, by the doctor that made the diagnosis of "fragile veins", by my CSN and by the team that put the PICC line in the day after.
I was once dragged round a pub by a student nurse showing all her student nurse friends my very good veins. The pub was infested with student nurses. I was a medical exhibit, she didn't bother to find out my name and didn't introduce me to any of her mates.
FCR, WHAT IS THE AGE LIMIT FOR FCR OR IS IT MORE ABOUT FITNESS
FCR, FC, or F
Blood transfusion after first round of FCR
FCR soon/confused
What is the best first-line treatment combination for CLL?
