How to ensure I get a port for 12 weekly paclitaxel?

[cancerboy]

My treatment plan includes 12 weeks of paclitaxel and herceptin after surgery, with herceptin continuing for a full year. I am only willing to try this treatment if I can ice my hands and feet throughout every paclitaxel infusion. I’ve purchased ice gloves and boots, but am worried that the team will try to deliver paclitaxel through a hand cannula, directly damaging my hands and preventing icing.

How do I ensure I can get a port (preferred) or PICC line for chemotherapy, without delaying the start of treatment? Alternatively, can they cannula into my arm instead of my hand, and will the ice mitts still work in this case? What are the restrictions on swimming, running, climbing and weightlifting for each option?

I’m 39 with good veins (and want to keep it that way!) I’m having a double mastectomy with left sentinel lymph node biopsy, so I guess that brings me down to only one arm for interventions anyway? I need blood tests at least yearly for the rest of my life due to other medication I’m on.

[jock]

Hello @cancerboy

As ever, it seems very dependent on your local NHS Trust and waiting lists.

I have a PICC line (still waiting for transfer to my requested preference for a Port). It seems that most oncologists prefer one or the other rather than a cannula being placed - that’s a lot of cannula insertions when you’re on weekly Paclitaxel and it’s a very irritant drug for your veins. They don’t always use just hand veins and can use arm veins but you’ll also be having weekly blood draws prior to your Paclitaxel so that’s more vein stabbing every week. So, I think to protect your vein health they’ll likely opt for a PICC or Port. PICC lines are quick and easy to fit whereas Ports require minor surgical intervention. My oncologist said best to get the PICC line in so we could get on with starting chemotherapy as there’s a wait time of several weeks to get a Port fitted. Also depends on how long your chemo lasts ( if <6 months they usually go for a PICC; how will your Herceptin be administered? IV or subcutaneous? If it’s IV you have a strong case to advocate for a Port.

At some cancer centres you can have an Arm Port (rather than a Chest Port) which are fitted by the Clinical Nurse Specialist (who does the PICC) so might be worth asking about that. I couldn’t have an Arm Port because I’d had lymph node surgery on both sides.

Also worth noting that having a Sentinel Node Biopsy won’t prevent you having vein interventions for sampling / PICC Lines etc on that side, it’s only when you’ve had all the lymph nodes removed (Axillary Lymph Node Clearance) that you’re advised not to have blood samples/cannulas/blood pressure cuffs etc on that arm.

As for the activities you want to do; you can’t swim or lift weights above your head with a PICC. You can do any activities with a Port.

Hope that helps.

[Nurse_BCN]

Hi cancerboy,

Thanks for posting.

Its understandable you are thinking about ways to prevent Peripheral neuropathy during your 12 weekly paclitaxel after your bilateral mastectomies and left sentinel lymph node biopsy surgery. The results of your surgery will usually be discussed at the Multi-disciplinary team (MDT) meeting to confirm the treatment plan going forward.

Peripheral neuropathy can happen if the peripheral nerves (nerves close to the surface of the skin) are damaged. Some targeted therapy drugs such as trastuzumab (herceptin) given intravenously can also cause peripheral neuropathy. It may be helpful to know that Trastuzumab (Herceptin) can be given in two different ways. Either by intravenous infusion (as a drip into a vein in your arm) or as a subcutaneous injection (an injection into the fatty tissue under the skin). Some hospitals may start with the intravenous infusion and switch to subcutaneous injection, but you can check with your team.

You say you have purchased cold socks and gloves (cryotherapy) and while results of studies on this are encouraging, more research is needed. Macmillan also have some information on peripheral neuropathy that may be useful. The main symptoms of peripheral neuropathy include a change in sensation such as pain, burning, numbness, pins and needles or tingling, most commonly in the hands or feet. This video about peripheral neuropathy includes information around exercise prevention that may be of interest.

You should talk to your treatment team around using cryotherapy and your concerns of damage to your veins before starting chemotherapy and as @Jock says, they can advise on timeframes for both PICC or port insertion as this will be dependent on your local NHS Trust. They can also assess the positioning of a cannula dependent on the accessibility of your veins if the decision is made to start chemotherapy while the arrangements for a PICC or port are in progress. Again, as @Jock suggests there’s no consistent evidence that giving intravenous medicines in your “at risk” arm will increase your risk of lymphoedema . While exercise is encouraged as much as you are able throughout chemotherapy and breast cancer treatment, your team can discuss with you any possible restrictions in terms of weightlifting for example in your individual case.

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