Churg Strauss/Radiotherapy

[Fennahj7115]

Has anyone had the experience of having churg Strauss and having to have radiotherapy for cancer.

Or do you possibly know if anyone else has .

I am also having oxygen at home.

[Suzym2u Moderator Vasculitis UK]

Just to be clear Fennah, have you been diagnosed with both CSS and Cancer? if so where is the cancer? sorry to ask these questions but it does help create a better picture.

Susan

[Fennahj7115 in reply to Suzym2u]

Hello yes I have CSS plus pan ,bronchectasis .using oxygen.

I had a mastectomy plus lymph glands removed e few weeks back.

Thank you for replying

[Suzym2u Moderator Vasculitis UK in reply to Fennahj7115]

wow! My goodness.. Where are you seen? are you in good hands for both the Vasculitis and the Cancer??? . I really do not know of anyone who is being treated for both the vasculitis and breast cancer, but I do know someone who has vasculitis and been treated for bladder cancer and another person treated for lung cancer and vasculitis.

I have a very close friend who has just this last week had a mastectomy plus lymph glands removed, she was only diagnosed with breast cancer 3 weeks ago. She will hear this week if she is to have radiotherapy and chemotherapy. She is younger than me and it has been such a shock.

I went with her for her first walk after the op, just a couple of days ago. She is being very brave but is scared too, her husband is coping by working hard but supporting her the best he can.

Susan x

[Fennahj7115 in reply to Suzym2u]

Thank you Susan. Yes I have had wonderful care over the last twelve years from City Hospital Birminghan my consultant and his team have been so very caring. Also the breast care team,and the diabetic department.

Several time I have felt unable to post to some people who have had problems with their level of care I have felt very much for them yet not wanting to emphasise all the positive aspects of the care i have and still receiving.

I was sorry to read about your friend I can imagine what she and her husband are going through also yourself perhaps a sense of complete being disabled to help in anyway yet how important it is for you to be there for her.

Such emphasis is put on family members if there is a serious problem but some friends can be far closer to you than family.

I appreciate the time you have taken to reply to my post I am still struggling with my decision.

[Zebra911 in reply to Fennahj7115]

Hi my name Is Kim. My daughter is facing RT for grade 3 breast cancer. Did radiation have any side effects on your lungs? We can’t find a study anywhere since Churg Strauss is so rare. Any information or resource you can point me to would be life sustaining for my daughter!

PS. Happy to hear you’re making it through!

[babssara in reply to Suzym2u]

Hi Susan, I feel your friend and her husband. It must be really hard for both of them. But, she also has you to help her through the bad times. Babs x

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There have been some studies. may I ask, fennahj, what immunosuppressive medications were you taking before and at present (and for how long)? Thank you for sharing and best wishes.

[Fennahj7115]

Thank you for replying. Over the years I have tried many different treatments the last was Rutiximab but I reacted to that as well as the other drugs. I had to be hospitalised, so at present I am on steroids only, well plus the many other medications.

[Zebra911]

My daughter in law will be having radiation for breast cancer in December and has Churgg Strauss syndrome. We are concerned about possible pneumonia. However, we will ask about the precautions and risks once she has more information. This is all new to us and to her.

[Zebra911]

I would love to know this answer as well as my daughter in law has Churg Strauss and mist undergo RT for breast cancer. We are very concerned about her lungs as it took 5

Years to get where she can breathe on her own with inhalers