PNH and Cancer Diagnosis

[Catarina M]

Hi All,

I have PNH (been diagnosed for about 3 years). In December 2018, I was diagnosed with breast cancer. Has anyone else dealt with PNH and a cancer diagnosis?

My dilemma is whether or not to pursue chemo as part of the breast cancer treatment. My understanding is that chemo reduces the blood count numbers, so with my PNH, I may end up needing transfusions during my chemo treatment.
Thankfully thus far, I have only needed one transfusion, so it’s a bit scary to think of undergoing multiple transfusions due to chemo.

Has anyone else with PNH gone through chemo for cancer?

Thanks in advance for any advice!

[Marlene]

Hi Catarina,

So sorry you are having to deal with both of these diseases. PHN alone is enough for anyone to deal with. Can you help me understand you concern about having to receive transfusions? My husband is not in your situation but has had many transfusion, well over 100 without problems. And even though he did not have cancer, he did undergo chemo.

Wishing you the best,
Marlene

[Catarina M]

Thank you for your reply, Marlene. I’m so sorry to hear that your husband has had so many transfusions. I guess I’m just scared of the chemo and the possibility of additional transfusions. Having had only one transfusion thus far, I worry about the risks of transfusions and the multiple side effects of chemo. My hemoglobin runs in the 8-9 range with my Soliris infusions, so the chemo is supposed to reduce that number.

Overall, how was your husband able to manage both chemo and SAA? Did the SAA make his chemo side effects worse?

Again, I’m just nervous and would love to hear how others have dealt with chemo and their blood disorders.

Thanks!

[Marlene]

He had high dose cytoxan over 4 days which wiped out his bone marrow. He was already transfusion dependent prior to treatment. So the chemo was just 4 days but it was intense and he was on multiple drugs afterwards which can effect blood production. There was a period when he was getting red cells and platelets daily. His bone marrow was not producing anything for quite some time. That was not what anyone expected so I guess he would be considered an outlier in the clinical trial.

I'm not sure how to answer your question about he managed all if it. I guess it wasn't really an option. He needed supportive transfusion therapy to stay alive so he just pushed through everything. The red cells actually made him feel better. No headaches, better energy and more strength. Having a central line in for the transfusions helped. He did have to take benedryl because he would get hives and that would wipe him out for a day. It also takes up a lot of your time. You just can't pop in get transfused.

I understand being scared. Sometimes the best you can do is to understand your options, weigh the risks, make your decision and don't look back. Take the word "should" out of your vocabulary. Make sure they explain all the treatment options available to you and get at least one additional opinion. I understand that depending on the stage of your breast cancer, chemo may be optional and whether you do it or not, it's up to the patient. I've had friends with breast cancer and they each took different treatment paths. From the minimal to the extreme so I can't image that this is an easy decision for you.