Long Term Phesgo Treatment

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Diagnosed with BC in 2016, single mastectomy, anaphylactic reaction to 2nd chemo session, placed on Herceptin and Perjeta which was administered via IV. Continued on that treatment due to to an irretractable area of tissue which was indetermined. So treatment was more of a preventative rather than curative measure. In 2022 I was eligible for the Phesgo injection which takes 15-20 minutes tops to administer and is wonderful given previous treatment could take anything from 2 - 6 hours!

Recently, I have noticed a tightness and heaviness in my legs which is beginning to slightly restrict mobility. I swim and walk every week but this seems to have added to the heavy feeling. Prior to this feeling and for many years, I have experienced excruciating cramps everywhere, but particularly in my legs. The cramps can last up to 10 minutes at times. When mentioned to the oncologist he couldn’t find any reason why I should be getting cramps but also cannot find any mention of leg stiffness/tightness as a side effect of Phesgo. My CT scans show no change in status since 2016 which begs the questions - is the treatment preventing spread or is the treatment really necessary?

I’m beginning to think it’s a build up of the treatment I have had for 9 years which is causing the problems. It is becoming more of a concern and would stop treatment if I dare but I feel I’m caught between a rock and a hard place.

Has anyone reported similar problems?

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Hopefully the nurse will be able to answer your question tomorrow.

I just wanted to signpost you to a HER2+ and need some buddies thread that has been going for over a year. I don’t believe anyone has had Phesgo as long as you but some are on Kadcyla for residual cancer. You may want to join the thread, we are a friendly bunch.

I noticed you have spoken to your oncologist, maybe you could ask them to contact another centre/colleague to see if this has happened to others. It might be something that is not recorded.

:smiling_face_with_three_hearts:

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Thank you for the signposts and I will ask the oncologist if he can ask around or if he knows of anyone else having similar problems.

The nurses that give the injection are also amazed at how ling I’ve been having treatment! My choice is continue and get the ‘unknown’ side effects or stop treatment and fear the unknown Catch 22.

Thanks again for your reply…

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Hi Lil,

Thanks for your post.

The cramps, tightness and heaviness you describe must be very distressing, especially as it is now affecting your mobility.

Phesgo can cause your muscles to cramp and be painful. It can also cause fluid to build up in the body, which might explain the sensation of tightness and heaviness. Rarely, it can cause heart problems. Swollen ankles and tightness can sometimes be a sign that the heart isn’t pumping effectively.

As these symptoms are persisting and getting worse, we would suggest you contact your treatment team again for a further assessment.

There may also be other reasons for your symptoms that are unrelated to the breast cancer treatment, so it’s also important to discuss them with your GP who will be able to rule out other causes.

As @naughty_boob mentions, you could also ask your oncologist if their colleagues have heard of anyone else with these side effects, or from any other patients who have had long term injections in their lower limbs.

Talking to someone who has had a similar experience can often be helpful. If you haven’t done so already, you may wish to look at our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

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Best wishes

Tiggy

Breast Care Nurse

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