I got very discouraged yesterday & cried. Options seem to be running out, not due to the drugs but because of my small veins.
Having been diagnosed with MBC in the pelvic bone 4/2019, 100% ER+, PR & HER-, I am on IBrance 125 mg/Faslodex monthly/Xgeva quarterly. I get blood tests every month. I have only one arm to get blood tests as my left arm has had 14 lymph nodes removed. I do not have Lymphedema.
My veins are very small & lately it has taken 4-8 attempts to get blood out of my right arm. It’s torture. I’m told the vein that has worked in the past is building scar tissue. Yesterday, the lab got blood out of my left lymph node arm, which they are not supposed to do but they were desperate. I drink about 100oz of water daily & 2 days before blood tests add small amounts of electrolytes to the water. It’s worth mentioning that I start my 7th cycle/month of IBrance 125mg in another week.
Is it possible to do blood tests less frequently if you pass the 6th month without major problems on IBrance?
What are my options?
1. PORT - I don’t want another port. I suffered greatly from the first one...plus the harsh chemo didn’t work anyway. The oncologist said they don’t always give blood either.
2. PICC line - I was told they need to be flushed every day & have high rate of infections. Not an option for me.
3. Stop iBrance and just do Faslodex & Xgeva to stop the monthly blood tests?
4. Other ideas?
I appreciate any help you can provide.
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I am sorry Hope that you are experiencing problems with the monthly blood tests . I can only have blood taken from my left arm due to the risk of lymphedema, having had an axillary clearance on my right side( I had 18 nodes removed of which 16 were positive!) . I have been fortunate that I have a good vein where my elbow joins and have never had an issue in 24 cycles . I too wouldn’t want the lab to get blood out of my right arm due to the risk of infection and subsequent inflamation . Also studies have shown that risk factors for lymphoedema increase if more than 5 nodes have been removed , with blood drawn from the ‘at risk’ arm being identified as a potential risk .
You should ask your onc for their opinion as to whether you could do less frequent blood tests ( if you have been having good bloods for over 6 months ) or what else they can suggest . I did read very recently on this site that a few ladies were having 3 monthly visits for blood tests ( think they are at the Royal Marsden London UK and in the south of England ) .They may be able to confirm / comment on here ?
It would be a shame to have to stop Ibrance if it is working otherwise for you . Take care and I hope you find a solution x
I don’t see why bloods can’t be taken from larger veins I.e in your leg or foot...I remember having to have an IV (long time ago) and they couldn’t find a vein in my arm but used the jugular in my neck....we have loads of veins
The veins in my hand are small so when I need a CT scan with contrast I tell them to use my arm not hand as it’s painful and very stressful
I've been told that most Phlebotomists are only qualified to take blood from a limited number of places which is why those of us with small veins have issues. Chemo nurses often have qualifications that allow them to use more locations! It's amazing the things you find out when someone can't find a vein! 😊
I have exactly the same issue, small shallow veins that move when a needle goes anywhere near them. And I have lymphoedema in my left arm.
I drink 2 Ltrs of fluid in the hour before the bloods are taken. I also make sure my arm is warm and ask them to use a butterfly needle.
I have a few regular veins and I always ask the phlebotomist to use a different place from the previous draw.
Doctors are absolutely useless and if the first phlebotomist can’t get a vein I ask who in the department has the best reputation and can I see them and while I wait I ask for a heating pad. Done with a big smile this usually works. Or I ask for an experienced chemo nurse, they are usually qualified to use veins not allowed to be used by phlebotomists.
When I was an inpatient I got dehydrated and after 8 phlebotomists couldn’t find a vein the ward sister used my ankle. She warned me it would hurt but it didn’t.
Using your affected arm is a risk but I have had it used when my other arm was being particularly uncooperative and it didn’t cause an issue with my lymphoedema.
I am glad you face no resistance when you nicely ask for a heating pad and the butterfly needle. My husband and I have been dismayed by the frequency with which that person gets sour and unhelpful. We ask nicely, explain why, and yet a number of people seem threatened or annoyed to be told how to do this. We continue to push back when this happens. I can't figure out why this is an issue for them. Often when we share this experience, a nurse will say they don't care as long as it works for the patient. But that is not routine in our experience.
I think I am so much tougher than I was before all this started. I always used to hate to inconvenience or displease, but I think the worm has turned. I'm not unpleasant or rude but I've got so much better at holding my ground. This is my body and I'm going through enough without someone, who is not competent to do their job well, treating me as a pin cushion. If they get sour or take offence that's their insecurity coming out and not my issue. (That sounds hard and I'm really not a nasty person. But that attitude does help when dealing with insensitive people).
Of course I never actually say that, I keep it light and make it sound as though it's entirely my fault and so it takes the blame off them and they are often more than happy to run and get someone who will take the responsibility for this person with the awful veins. Of course occasionally there is just no one else available or it means a long wait.
One other thing that I'm not sure I could recommend but definitely worked. I'd drunk my 2ltrs of fluid had a warm body and arm and my veins still weren't playing ball. I had a young phlebotomist. He said I've got a vein but this is my last option how do you feel about me trying it without the alcohol wipe? He explained that the alcohol wipe could make sensitive veins disappear. Well I agreed, he got the blood and there was no infection.
Hmmm, that is interesting about the alcohol swipe. I will look into that. Thanks too for suggesting more fluids. I don't think I realized this is important until I read these posts. Thanks!
Perhaps if you are just having your blood counts done (CBC) they could get it by sticking your finger as they would with a small child? It hurts, but only for a second. I worked in the lab/ phlebotomy my whole career, and that's all I can suggest. Good luck to you.
Same problem here. I too try to hydrate and I hold my hand over the vein to warm it up or use a warm towel to do it. May help a little? I know it’s brutal when they keep poking at you. Sorry 😐
Im in same boat with blood tests. I actually get pissed off at techs when they cannot easily get my mini veins in the one arm. I have certain people that I insist on doing the draw at different places and will not let anyone else try. For regular blood work a baby needle is necessary, scans are a different thing but the hospital I use has one good guy and I will leave if he cannot draw or is not there. I just refuse to be tortured by techs that cannot do a good stick under our circumstances. Not their fault, I have just lost patience in this area as well. There are of course veins in other parts of your arm if no other option. Problem with ports is infection and having to go back and forth. But, if you have no other options!
BLMS - Preach! I just said much the same thing in replying to another poster. I don't get it. I am the patient. I know my body. I explain with a smile but it is odd how often it is resisted. I have a question for you please. I ask for the smallest needle which they say they have. But a butterfly needle is not the same as a pediatric needle, correct? When I ask about the pediatric needle, they often say they don't have one in the lab. Have you encountered this? Any suggestions please?
Ok NO idea why you say PREACH when some of us just give our opinions to try and help. If you just want sympathy, then I’m no help. I don’t consider my self a victim or a patient. I’m sorry your sensitivities are offended. I don’t take support as a pity party. Maybe this is problem with messages not words. Not sure. Preaching is NOT my style,
I didn't think when she said PREACH! that she was at all trying to offend you. By her response, it seemed she was more or less saying the same thing you were. I thought she was kind of "applauding" you for the way you insist on having thing done. I think you misread it the wrong way bc that is not the way I seen her reply to you but your response was pretty blunt in how you thought she meant it. She continued to ask you for your opinion and suggestions.
I think your response was harsh and that you misread or misunderstood what she meant. In reading the totality of her email to you, it seemed she agreed with you but when she asked she was ignored and asking you for suggestions.
BLMS - I’m sorry. By saying “preach”, I was praising you and commending your approach. I’m trying to figure out how to manage challenging situations like weak veins. I’m sorry I inadvertently offended you.
please don't apologize. I am not easily offended, nor do I hold any malice for much of anything anymore--just makes health worse. This is the problem sometimes with our emails and texts!! Totally fine.
I do not want anyone, any longer in my life, to be their training ground with my terrible veins. I honestly don't care how that sounds, MBC and keeping my head straight to live in the moment is enough work. I know you all understand.
And yes, I misspoke when I said baby needle--butterfly. Unfortunately, it is all about how good the person is that is doing the draw. Are you at a hospital or a private doc? If larger institution, you can find your fav and always insist on that. If not, that is more problematic. I often get my blood work drawn at my primary because there is a great tech there. But, then again , I most often monitor my own blood results, much of the time.
At the cancer center I go, usually they are technicians that draw my blood, not nurses. Only nurses are used though for my falsodex injections. I never even heard of a butterfly needle. But a I mentioned, they have been taking it from the top of my right hand since my veins in my arms are hard to find, but you can easily see the veins on top of my hand. Never once had an issue and no bumps or scars there either. I barely feel it no matter which technician does it.
I do not get upset with techs if they have a hard time. Sometimes I will be told she is in her learning training period and I will let her try. They have to learn somehow and it is not a major life threatening thing if they miss a bit or have to do it again. It does not hurt me. Usually, they are more nervous than I am. I also do not demand only certain people can take my blood or whatever. I don't think of getting a needle put in your arms or hands is torture unless you have a very low level threshold for pain. There are so much things to worry about with MBC. I have them take out my blood from the front of my right hand. Every single time for over a year and a half and not issues at all. It's much easier for them. But I will allow a trainee to do it (and had no issues) since they need to learn. I can handle a small prick in my hand. For me the side effects of the meds are my biggest issue. The needle and blood drawn is the least on my list of things to get stressed about.
Kearnan - I’m glad you don’t have the problem of weak veins like several of us. You don’t need one more challenge to your life for sure. OTOH, I need this guidance because I am not so fortunate. Honestly, I’ve cried more than once when the needle goes wrong and requires multiple painful sticks. I’m not like that usually but it’s so frustrating when I ask for leniency from a tech and the problem persists and not just with trainees. It is one of my unfortunate stressors each time I go in. I now ask my husband to join me each time because it is enough of a problem that I need his moral support. Just one more crappy thing for me with MBC
I do have very thin veins which is why they do not use my arms. Even when clenched, they cannot find my veins. I can't even see any in my arms (I know I have them though:). This goes back to when I used to donate blood, they always had such a hard time doing it in my arms so now the top of my hand is used, and I have used the same hand for over a year and a half now. Only once a new trainee was nervous and having problems so the senior tech took over and showed her. I felt bad. The trainee was so nervous but they need to learn how to do it so I will be their pin cushion bc I never had any issues with needles. Even with the falsodex injections, some women need heating pads afterwards or such. I am fine. A small pinch and once I get them done, I can walk and sit immediately on a hard surface and feel nothing. I do have a meaty butt and I do think that makes a big difference as to why I just feel a pinch.
I have tiny veins, too, and I feel like such a broken record when I go in: “Butterfly needle only please! Please use the butterfly needle. That one is way too big.” They’re much more successful (in my case anyway) when they use the butterfly needle. It’s much smaller.
Referring to Maddy's response, there's a new kind of thingy they use to stick the finger to get blood (I get regular PT/INRs because I take warfarin) that absolutely doesn't hurt. Nothing, nada, 0 pain level. It might be difficult to get enough blood, but the technician could just keep putting pressure on the finger to keep blood flowing. Certainly worth asking.
To answer your other question, I've been stable on Ibrance/letrozole for 20 months and get blood work done about every 3 months.
I have very thin veins too and can have blood drawn only on my left arm. My Saviour is the “butterfly needle”. I go to only 1 hospital for my blood work. I too would love to have blood tests every 2 to 3 months instead of monthly!
So sorry I totally understand how upsetting this is. I have lymphedema in my left arm and 1 vein in my right arm that they use. My oncologist only had my blood drawn every other month due to that same issue of scaring. I’ve been on Ibrance/ Faslodex for almost 10 months and after 6 months when counts seemed to be the same she switched to every other month. It’s worth asking if your counts have been the same. Best of luck.
I have small veins that roll. I had a port reinstalled and I’m so glad I did. This one is more flush and comfortable and I forget it’s there. I even know someone who had one put in their shoulder. Maybe it would be worth speaking to a doctor about your concerns with a port to see if they can be overcome.
I've been getting monthly lab draws for almost 5 years now, all from my right ac. I worry what we will do when that vein gives out.
If your Ibrance/current treatment regimen is working I would NOT change it - figure out a solution to the problem with your lab draws.
As a registered nurse I worked many years pediatric acute care. Pediatric patients can be a difficult IV start or lab draw. It sounds like you are well hydrated (good for you!). I agree about the port as I too have had one and unless a last resort I would not go that route
My first question is.....are they utilizing their most skilled phlebotomist staff to draw your labs? You are not a good patient for someone to learn on, your lab draws should only be attempted by the most skilled phlebotomist. Have they tried applying a warm pack to your arm? This warms the vein and dialates it, making it fuller and easier to access.
A PICC line is not really a good option, because of the care it needs DAILY. The infection risk from a "properly" maintained PICC line is relatively low, but you would have to go into the clinic often to get it flushed and a sterile dressing change.
Inquire about the possibility getting appointments only with the top phlebotomist at your facility. All of the hospitals where I have worked over the years have a vascular access team (all RN's) who specialize in the difficult IV starts or lab draws. If you are going to a clinic they may not have such a department, is there a hospital affiliated with your clinic you can go to instead? Talk to your oncologist about this, maybe they can help.
Hi @Sister3nkc: I appreciate your response. I do get a butterfly needle & I bring my own hot pack that I have on my arm to get the vein/arm warm. I would always ask for Jay because he could get me every time on the first try. This past week he tried 2x & couldn’t get any blood. For some reason he doesn’t always want me to use the hot pack. I have no idea why. That is when I had an planned 15 minute appt with the oncologist’s nurse practitioner. She said they could use my Lymphedema risk left arm this one time. I asked for the best chemo nurse or Jay if he felt he could do it. When I asked who their best IV/Phlebotomist was she said “they are all good.” Those of us with small veins know that’s not true. So Jay got blood right away out of my left arm. I’ll check to see if they have pediatric needles & see if we can move the blood tests to every 2-3 months to give the vein a rest.
I'm sorry to hear your dilemma. I too have a very difficult time in getting an IV or blood from my arm or hand. I still have my original port from 2006 and it is probably my best friend. Nurses and drs cannot believe that I still have the port after 13 years. I begged my oncologist not to remove it when I was in remission in 2008. I am thankful he has let me keep it. I do get it flushed monthly and they use it for EVERY blood test possible. I have also used it for MRIs and PET Scans. Sadly mine is too old and I cannot use it for a CT or Bone Scan. (The new "power ports" are supposed to be amazing.) I request that they use the Ultrasound Vein Finder when my port cannot be used. It requires scheduling and planning to get someone to do this for you. It has helped tremendously in easing my anxiety about getting stuck. Look into these options, I think you may be surprised. Good luck - I feel your pain as I have been a human pin cushion for years.
oh bless you, what a nuisance. I'm no medic and I'm sure someone with medical expertise can answer this, but if there's problems with your veins in your arm, why can they get blood from somewhere else? I suppose the veins aren't as visible in our legs but what about our feet? I can see veins in my feet. Maybe something to ask your Onc? I hope they sort it for you.
I asked if they could do my feet, the hands almost never work. I was told by the nurse practitioner that they could not. I asked Jay & he said he doesn’t do feet. I would have to go to a chemo nurse for that. ❤️🙏❤️🌈
Sounds like Jay is a phlebotomist vs RN, not that it matters, phlebotomist' are only allowed to attempt a draw in certain anatomical locations, RN's have a broader scope to work with. FYI, it is VERY painful to draw from the foot.
I have "hard to find" veins also. Every month, they take my blood from the top of my right hand. Never my arm bc I know its too hard to find a vein. It does work easily and I have them taking it out in this way (top of my hand) for over a year and a half. It doesn't cause me any problems, barely feel it go in and apparently no issues since it is the same area every single time. My blood work is done every month and always the same spot and not even a little scar or anything. It is just like a pinch.
while no lymphoma and three non cancerous nodes removed on the right side, the left arm is the one where all draws are done; butterfly needle, only.
four years metastatic, the arm is still producing without much challenge; one vein will roll. i think about the consistency of the draws and the effect on the veins.
as per the onc, i know there are 'Ibrance guidelines,' for blood draws. i speak with the onc, with each PET/CT scan, about what is required/necessary. i started with monthly draws, then went to quarterly, and now, draws are every four months.
I too have small bouncing veins. I got a power port in April of 2017 which I love. It is used for blood, cat scans and pet scans. They did caution me to be sure that anyone accessing it be trained to do so. For me, it means only my oncology office can access it. The local hospitals or blood draw clinics are not qualified and could cause great harm. When I go to Moffitt Cancer Center every six months all of their employees are trained. Blessings Hannah
I know just how you feel re the blood tests. After chemo 9 years ago my veins collapsed. This time round my weekly blood test became a nightmare. I can truly recommend a Picc line. I have had one for months now and it is cleaned one a week when I get my bloods done certainly not every day. No pain, no problem. However I am changing to. Port a cath after my 24 weeks on Taxol is over so we can go on a holiday and swim. Please consider the Picc line if you don’t like the port a cath. Seems dreadful to give up treatment for such a simple fix. I wish you well in your choice x
If they are just checking your CBC they could do a finger stick. I was a lab tech pre MBC days and sometimes it’s a last resort. However if multiple labs would not recommend. Wish I could help!
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