Port/Central line/ Pic line & questions

NewOne39
NewOne39 Member Posts: 29

 I am so confused I am told that I will have to have a Port or Central line or a Pic line but I don't know anything about them.  Has anyone with TNBC with mets, stage 4 had to undergo this treatment?

If so which did you chose and why.

I am in a study and at first they did not allow a line of any kind but now they have agreed to allow me to have one.  I really don't want one because it just scares me.

I am also hearing that I will die fom TNBC with mets it may not be this week or this year but I will succumb to this disease.  I am really down now just hearing this comment.

I have been going through the chemo and recently had a "stereostatic" treatment (my chemo was stopped during this time).  The radiologist told me that he would not do a PET scan because the last PET scan did not show any uptake so I will be scheduled towards the end of February for a CT scan. 

questions  for . . . everyone with TNBC mets are you on chemo?  I am on Taxol, Avastin and (?) undisclosed study drug.

Have you been told that you will be on chemo for the rest of your life? 

Will chemo ever stop for those of us that are TNBC with mets. state 4?

 

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    Hope this helps .. a little

     

    Port

    In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

    Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

    The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

    How it works





    The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.


    A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.

    The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a winged needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.

    If a port is used infrequently, it may be necessary to access the port, flush it with saline, and inject a new heparin lock every month to prevent clotting between uses.

    The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.

    A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.

     

    Picc Line

    What is a PICC Line and Why Do I Need It?

     

    A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body � the extremities. And typically the upper arm is the area of choice.

    A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

    Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient�s room decreasing discomfort, transportation, and loss of nursing care.

    A PICC line may requested for a variety of treatment options which include some of the following:

    -Prolonged IV antibiotic treatment;

    -IV access obtainable by less invasive and longer lasting methods;

    -Multiple accesses obtainable with one access line;

    -TPN Nutrition;

    -Chemotherapy;;

    -IV access related to physiological factors; and

    -Home or sub-acute discharge for extended treatment.

    PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters. A PICC is not appropriate for all patients. Proper selection to determine the appropriateness of this device is required.

    The PICC may have single or multiple lumens. This depends on how many intravenous therapies are needed. A PICC line can be used for antibiotics, pain medicine, chemotherapy, nutrition, or for the drawing of blood samples. PICCs can be inserted by radiologists, physician assistants or certified registered nurses. They are inserted using ultrasound technology at the bedside or ultrasound wit fluoroscopy. Chest radiographs are also used to confirm placement of the PICC tip if it was not inserted using fluoroscopy.

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    I am sorry to hear that you are at stage 4

    There are WARRIORS here 'Thriving and Surviving' at stage 4 ..  Hoping one of them chimes in on your post.

    Gentle hugs. dear Sister in PINK.

    Vicki Sam

  • camul
    camul Member Posts: 2,537
    Hi

    I am stage iv, idc triple positive (or on herceptin because I was borderline her2 positive),  I have a power port.  I was scared, but knew that from my first round with chemo, my veins were shot.  Putting the port in was not anything I expected.  It was much easier.  I went in the morning, they gave me an IV with antibiotics, numbed the area, put me in a twilight sleep, didn't hurt, was in recovery for about an hour, they gave me some crackers and a drink and I came home. 

    It has been a God-send.  No more digging, veins not collapsing.  It is used for almost all of my tests.  It is just a little prick, and they asked me if I wanted cream to numb it before, but it has never hurt so I have not needed any creme.  The chemo is very hard on the veins, and after a while they break down.  I had a right side mastectomy with the nodes removed, so my left arm was overused. 

    I love my port and only wish I would have had one the first time around.  When it comes to a port, it does not matter if you are negative or positive.  I have friends who were stage 1 and 2 who opted for a port, my doctor offered it the first time, but I said no.  Your doctor is correct, stage iv is not curable, however, for many it becomes a chronic condition where they go into a remission or the cancer stableizes (does not actively grow), and chemo is put on hold.  We have many here who are in that position.  Cypress Cynthia, Sirod has gone a really long time with stage iv. 

    When I was diagnosed with stage iv, it was already through my bones and skin and I have not hit a remission, but there is no way I could have had chemo weekly for almost 2 years without the port. 

    I am so sorry that you are stage iv, but there is no time limit on how long you will be here.  I was told 3 months without chemo, maybe 6 with...  that was 2 1/2 years ago.  It continues to grow, but I am still alive and living.  When I pressed him for a prognosis, he told me this, he also stated it was based on statistics and I could be different. 

    Hugs,

    Carol

     

  • Rague
    Rague Member Posts: 3,653 Member
    I'm not TN or have mets (as

    I'm not TN or have mets (as far as I know) - I'm IBC (Inflammatory Breasst Cancer), Stage III and ER+.

    Do not be afraid of a port (or even a PICC) as the possible problems caused by the chemo materials can do horrendous things to your veins wheninfused by 'needle sticks'.  Especially when you have veins that are already not easy to hit.  I have great veins and knew that once surgery was over there would be only one arm left to use so wanted to protect it as much a possible.  (The guy who does most of my draws always laughs that while men are supposed to have better veins than women I have better veins than most men.)

    My decision to do a port to start with as I had done my research and wanted to protect my veins and did not want a PICC.  When I was in High School one of my friend's little brothers had leukemia and they used a PICC with him and I did not want to deal with that.  I am a very active outdoor person/horsewoman and the potential for problems with a PICC were just too high for me.  A port is enclosed within the body and only when it is medically accessed, is it 'open' to the outside 'world'.

    My port wass put in in Aug 2009 and is still in.  My choice (with my Drs approval).  The 'odds' for IBC is that only 1 in 4 will make it to 5 yrs post DX without at least moving to Stage IV so to me it makes sense to keep it in and ready just in case needed (I have a vivid imaginatino - so I visualize my port as my little soldier standing guard so that the IC Monster will not try to attack again as it knows that there is already an 'armed force' ready to do battle.)  IF it's needed - then it's already there and ready - so one less surgery in the future.  Because I'm not on any chemo now, I have to go in monthly and have it flushed (blood drawn back, saline injected, heparin injected to prevent clots) and off I go for another month.  For me, I like going in monthly for the flush as I see my PA's RN and I can ask her about any questions I have and if needed she will go directly to PA and I'll see her if needed if not get answers from her..  So to me it is pro-active.

    Sorry gor rambling on - I tend to do that sometimes.

    Winyan - The Power Within

    Susan

  • New Flower
    New Flower Member Posts: 4,294
    Rague said:

    I'm not TN or have mets (as

    I'm not TN or have mets (as far as I know) - I'm IBC (Inflammatory Breasst Cancer), Stage III and ER+.

    Do not be afraid of a port (or even a PICC) as the possible problems caused by the chemo materials can do horrendous things to your veins wheninfused by 'needle sticks'.  Especially when you have veins that are already not easy to hit.  I have great veins and knew that once surgery was over there would be only one arm left to use so wanted to protect it as much a possible.  (The guy who does most of my draws always laughs that while men are supposed to have better veins than women I have better veins than most men.)

    My decision to do a port to start with as I had done my research and wanted to protect my veins and did not want a PICC.  When I was in High School one of my friend's little brothers had leukemia and they used a PICC with him and I did not want to deal with that.  I am a very active outdoor person/horsewoman and the potential for problems with a PICC were just too high for me.  A port is enclosed within the body and only when it is medically accessed, is it 'open' to the outside 'world'.

    My port wass put in in Aug 2009 and is still in.  My choice (with my Drs approval).  The 'odds' for IBC is that only 1 in 4 will make it to 5 yrs post DX without at least moving to Stage IV so to me it makes sense to keep it in and ready just in case needed (I have a vivid imaginatino - so I visualize my port as my little soldier standing guard so that the IC Monster will not try to attack again as it knows that there is already an 'armed force' ready to do battle.)  IF it's needed - then it's already there and ready - so one less surgery in the future.  Because I'm not on any chemo now, I have to go in monthly and have it flushed (blood drawn back, saline injected, heparin injected to prevent clots) and off I go for another month.  For me, I like going in monthly for the flush as I see my PA's RN and I can ask her about any questions I have and if needed she will go directly to PA and I'll see her if needed if not get answers from her..  So to me it is pro-active.

    Sorry gor rambling on - I tend to do that sometimes.

    Winyan - The Power Within

    Susan

    No uptake on PET usually means remission

    Hi 

    i am stage IV  while it is Er+ it behaves as TNBC and has been treated as such

    No Marker uptake on PET means no active cancer. Please ask your doctor to explain your PET scan results to you. While I am not a doctor it is my understanding that you are in remission and should feel good about your future.

    Please walk away from those people around you who are giving you an expiration date. Keep your chin up while enjoying your family and daily life.

  • Winter Skye
    Winter Skye Member Posts: 2
    Stage 4, mets., TNBC - no expiration date here :D

    Dear NewOne 39, Sounds like we are in the same place with this horrible disease.  I have a port.  Couldn't stand to see it in my chest (at first).  Soon I began to appreciate how safe, comfortable and easy it is for receiving medicine.  Now I am glad that I have it.

    I have been on the same drugs as you.  Currently on Nabelbine.  The drugs that I have been on have made my cancer stable.  

    Like you, I have been advised that I will be on chemo. on-going.  Unlike you, I have been told that it is possible to have this disease as a chronic, stable condition.  Right now Triple neg. BC is getting a lot of attenetion in  research.  I believe that there will be a treatment for this disease within two years.

    I do not let "my head" or anyone/anything else tell me that I will not survive.  My reasoning is that I will never, ever, let cancer take away my tenacious spirit and determination.  To me, it is like fighting evil.  The going is tough...but you never ever give in.

    I currently undergo chemo. most weeks.  I still go to the gym, visit with my friends, travel, have fun with my husband and most importantly I Live every day of my life.  Cancer will never take this away from me.

    Sending hugs and smiles - You Can and Will get through this.

    Namaste

     

     

  • NewOne39
    NewOne39 Member Posts: 29

    Stage 4, mets., TNBC - no expiration date here :D

    Dear NewOne 39, Sounds like we are in the same place with this horrible disease.  I have a port.  Couldn't stand to see it in my chest (at first).  Soon I began to appreciate how safe, comfortable and easy it is for receiving medicine.  Now I am glad that I have it.

    I have been on the same drugs as you.  Currently on Nabelbine.  The drugs that I have been on have made my cancer stable.  

    Like you, I have been advised that I will be on chemo. on-going.  Unlike you, I have been told that it is possible to have this disease as a chronic, stable condition.  Right now Triple neg. BC is getting a lot of attenetion in  research.  I believe that there will be a treatment for this disease within two years.

    I do not let "my head" or anyone/anything else tell me that I will not survive.  My reasoning is that I will never, ever, let cancer take away my tenacious spirit and determination.  To me, it is like fighting evil.  The going is tough...but you never ever give in.

    I currently undergo chemo. most weeks.  I still go to the gym, visit with my friends, travel, have fun with my husband and most importantly I Live every day of my life.  Cancer will never take this away from me.

    Sending hugs and smiles - You Can and Will get through this.

    Namaste

     

     

    thank you
    Thank you for all the support and information.

    The port info vs the picc info was very helpful. I am still scared to have either one because I am also on coumadin because I had a blood clot in the lung and think this may place me in a higher position for more clots especially since the tube or line is near the heart.

    And... I didn't really understand the "no uptake on the pet scan" the radiologist told me that there was no reason to do a pet because of the lack of uptake and will do a CT scan instead.

    I am also in a study and they will keep me for about another year and a half unless something happens and they have to take me off. So I do need to make a decision about the port or picc so your info is very very helpful and I dont feel so alone now.

    I actually have some good days and try to always stay upbeat but that is very hard at times. I am afraid a port or picc will just make me feel really sick but I do understand it may be needed. That makes me sad.
  • NewOne39
    NewOne39 Member Posts: 29
    NewOne39 said:

    thank you
    Thank you for all the support and information.

    The port info vs the picc info was very helpful. I am still scared to have either one because I am also on coumadin because I had a blood clot in the lung and think this may place me in a higher position for more clots especially since the tube or line is near the heart.

    And... I didn't really understand the "no uptake on the pet scan" the radiologist told me that there was no reason to do a pet because of the lack of uptake and will do a CT scan instead.

    I am also in a study and they will keep me for about another year and a half unless something happens and they have to take me off. So I do need to make a decision about the port or picc so your info is very very helpful and I dont feel so alone now.

    I actually have some good days and try to always stay upbeat but that is very hard at times. I am afraid a port or picc will just make me feel really sick but I do understand it may be needed. That makes me sad.

    VickieSam

    I read your post to McMarty and I am amazed that I too have all those symptoms you have or have had.

    Exhaustion, Insomnia, neuropathy in my hands and feet, watery eyes for months long after chemo treatments completed --- nose sores --.  I lost several toe nails, and finger nails

    There have been days I could hardly walk acoss the room and last night I was up till 4am, my eyes are like the flood gates just opened and the nose/sinus sores/scabs/bleeding continue.  I lost two toenails and have 7 fingernalils affected and will prob loose them.  But you have made me feel better because I am not alone and it isnt just me.  This can be a very lonely disease.

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I'm TN inflammatory BC with

    I'm TN inflammatory BC with mets to the lymph nodes between my lungs.  I've also had mets to the brain (treated with rads, no evidence of brain mets now).

    Yes, I was told I will be in treatment for the rest of my life.  I was also told I might be able to have a few short breaks here and there.  Honestly, I'm not sure if I want breaks. I feel like the chemo protects me.

    I hear people compare stage IV chronic diseases like diabities.  I prefer to think of it like HIV/aids.  You can live with it for a long time with proper treatment, and yes, this disease could kill me.  But so could a car accident, or a heart attack.

    I have a husband and two kids, so it's really important to me to live each and every day.   I want to be around for a long time!

    hugs,

    Linda

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I forgot to say I have a port

    I forgot to say I have a port which I'm really happy with.  I have lymphedema in my left arm, chest and back.  That means no needles in my left arm.  My right arm was orginally used for chemo infusions, those veins are shot.  I had a bilateral so the right is also at risk for lymphedema, so again no needles.

    Finally, I currently have chemo two weeks on and one week off.  Plus regular CT scans and MRI's.  So my port gets lots of use.  The chemo nurses also really like the port.  I do use the cream, when I remember, or the nurses offer a cold spray.  The port has also been accessed without anything, it really doesn't hurt any more than a standard IV prick.

    Hugs,

    Linda

  • NewOne39
    NewOne39 Member Posts: 29

    I forgot to say I have a port

    I forgot to say I have a port which I'm really happy with.  I have lymphedema in my left arm, chest and back.  That means no needles in my left arm.  My right arm was orginally used for chemo infusions, those veins are shot.  I had a bilateral so the right is also at risk for lymphedema, so again no needles.

    Finally, I currently have chemo two weeks on and one week off.  Plus regular CT scans and MRI's.  So my port gets lots of use.  The chemo nurses also really like the port.  I do use the cream, when I remember, or the nurses offer a cold spray.  The port has also been accessed without anything, it really doesn't hurt any more than a standard IV prick.

    Hugs,

    Linda

    You are so positive!
    I had no

    You are so positive!

    I had no idea so many had ports. I dont mind the IV sticks because they dont hurt me but if the veins are damaged a lot guess I will have to look at getting a port. Still dont want one ...

    I also had a bilateral with lung mets and I have treatment three weeks on and one week off. First and third week is just about an hour and a half but the secobd week is about five to six hours.

    They give me double benadryl which I will have to ask for less because it causes me to have slurred speech and dizziness then I sleep most of the day.

    Your children are very lucky to have you for their mom.
  • Andy0102
    Andy0102 Member Posts: 6
    ports
    Hi...so sorry you are having to go through all that. I just had a port put in a week ago. It wasn't my choice but nurse had hit a nerve in my hand and now it can't be used.
    I do love the port though. I was very scared to get it but my fears were unfounded.
    Yes you know it's there but it's not like it hurts or anything.
    You can sleep, shower etc just like normal.
    I hope this helps. Best of luck
    Hugs
    Andy
  • Rague
    Rague Member Posts: 3,653 Member

    I forgot to say I have a port

    I forgot to say I have a port which I'm really happy with.  I have lymphedema in my left arm, chest and back.  That means no needles in my left arm.  My right arm was orginally used for chemo infusions, those veins are shot.  I had a bilateral so the right is also at risk for lymphedema, so again no needles.

    Finally, I currently have chemo two weeks on and one week off.  Plus regular CT scans and MRI's.  So my port gets lots of use.  The chemo nurses also really like the port.  I do use the cream, when I remember, or the nurses offer a cold spray.  The port has also been accessed without anything, it really doesn't hurt any more than a standard IV prick.

    Hugs,

    Linda

    It HURTS - for me

    For me, accessing my port REALLY hurts without numbing spray or cream!  Mine's only been accessed once without numbing and it was much worse than any neeedle èever has.  Mine only gets flushed each  month now as I have great veins in left arm so it's quicker and easier to just stick.

  • NewOne39
    NewOne39 Member Posts: 29
    Andy0102 said:

    ports
    Hi...so sorry you are having to go through all that. I just had a port put in a week ago. It wasn't my choice but nurse had hit a nerve in my hand and now it can't be used.
    I do love the port though. I was very scared to get it but my fears were unfounded.
    Yes you know it's there but it's not like it hurts or anything.
    You can sleep, shower etc just like normal.
    I hope this helps. Best of luck
    Hugs
    Andy

    CONCERNS

    I think what concerns me most with a port or any line are clots.

    I had a lung clot (I am currently on coumadin) and now have frequent sinus clots. 

    I am really concerned that a port may cause more clots and especially since it is near the heart.

  • New Flower
    New Flower Member Posts: 4,294
    NewOne39 said:

    CONCERNS

    I think what concerns me most with a port or any line are clots.

    I had a lung clot (I am currently on coumadin) and now have frequent sinus clots. 

    I am really concerned that a port may cause more clots and especially since it is near the heart.

    You need communicate your concerns

    Please communicate your concerns to your doctors. Tell them about blood clots and your reservations