lingering side effects after finishing herceptin

[Jedrik]

I had my eleventh infusion of herceptin yesterday, that is the fifth without any chemotherapeutic agent. I take no other medication.

I have noticed increased neuropathy in the last couple of weeks, mostly in the lower extremeties, but every now a tingling like after hyperventilation all over my body. Especially after cycling a lot hurting legs and feet kept me from sleeping. Last night was the first night those tingling legs kept me awake for quite a while without me doing anything to provoke it. So I guess this will get worse before I'm through. Right now my whole body is tingling.

My shin and feet muscles cramp easily (which they never did before chemo) and about the first week after infusion the lower legs swell with water retention.

My nose is always clooged and sore and will drip readily in cold, after a cold drink and sometimes after a meal (which is really weird).

The skin under my heels and next to the corners of my thumb nails breaks again and again and again which is quite painful at times. The skin between my labia gets sore the first week after infusion, too.

My hair does not really grow. Nearly four month after last chemo it is not more than a short pelt: It covers my head, but it is very short, and soft, and has no volume. This might be a lingering or lasting effect from the taxotere, but I don't really think so (which might be wishful thinking, as that might not be reversible).

My nails grow at snails pace, too. There are still quite noticable blackened bits from chemo. I guess it might take them two more month until they will be grown out and the new growth appears to be quite a bit thinner.

Some of those gastric side effects are probably due to herceptin, too. Especially the first couple of days I feel a bit queasy, forever hungry, and I need to burp a lot.

Recovery from sports and healing of wounds and bruises is seriously delayed.

[Colleen]

@Jedrik - I had similar side effects that lasted and /or eacalated after dropping the "nasty" part of the chemo regimen. My neuropathy worsened for close to a couple of months after the taxane was dropped. I finished the taxane in February of 2014 and five months later I had a lovely gray "buzz cut" for my daughter's wedding, not what I was expecting. I had thought I would have a bit more hair 5 months later but nope didn't happen. My hair has grown but I keep it short, so much easier, and the gray is gone (cut off over time). My nails are thinner now so I also keep them quite short, I don't think they will ever be what they once were. I use a nail strengthner but do not use colored polish as it seems to negatively affect them. I too experience mild weird cramps in my feet and legs but try to constantly keep my electrolytes balanced. I love to swim and cycle regularly. My neuropathy has dissipated over time but is not completely gone, some nights are worse than others which is usually a sign I am over tired and need rest. As for the nose drip this is initially caused by hair loss, we lose hair "everywhere" including the lining of our nose. Without those tiny hairs to filter we drip drip drip. Somedays I thought a tampon in my nose might be a good idea :-/ The drip is better and comes and goes. I too spoke with the people at Genentech and is all they do is read the "box label", my oncologist is not much better. When I tell her these things she looks at me like I have two heads. Also my eyelashes and eyebrows never fully grew in, so I color on eyebrows every day and only wear mascara occasionally. Hang in there things will improve, its just a much slower process than we hoped for. Ease into the exercise part, you are not back to where you were prior to the taxane but you will get back there. Read the book Mind Over Medicine, its wonderful. I also used a lot of acupuncture to promote healing.