[Ulrika]

Cyclophosphamide (Cytoxan) side effects

by Ulrika on Sun Aug 18, 2013 3:00 am

My husband had a dose of cytoxan on Friday ready for stem cell harvest. Today (Sunday) we were back in hospital as he had stomach pains. Turns out it may be an infection (they said his white blood cells were slightly raised...) he has no other signs of infection.

Another issue is irregular heart beat... I am concerned that it has done permanent damage they are going to look at giving him something to thin the blood to stop the risk of stroke.

Does this mean he may not cope with the Chemo / melphalan for SCT?

[Ulrika]

Re: Cyclophosphamide (Cytoxan) side effects

by Ulrika on Sun Aug 18, 2013 7:27 am

Turns out it was an unrelated attack of diverticulitis - the surgeons are currently deciding what to do - to operate or not! It may mean a halt in multiple myeloma treatment. Such a shame this has happened now - when his immune system is compromised big time. Not sure what to think or where we go to from here. It's going to be a long night.

[Dr. Ken Shain]

Re: Cyclophosphamide (Cytoxan) side effects

by Dr. Ken Shain on Sun Aug 18, 2013 7:33 am

Please keep positive thoughts. Your husband should get through this with a bit of time and excellent care. This will hopefully on delay your planned management strategy for the myeloma. Please keep us updated.

Also make sure that the surgeons are in contact with someone from your transplant team.

[Ulrika]

Re: Cyclophosphamide (Cytoxan) side effects

by Ulrika on Mon Aug 19, 2013 6:33 am

They took my husband into emergency surgery late last night - not before telling us that he would probably not make it. He did survive the operation - he isn't in intensive care either which is fantastic. They are still VERY concerned about the next couple of days with the cytoxin taking full effect on the immune system.

The oncology team and surgical team have worked together closely on this - overall we are confident they are really working hard to keep my husband alive.

We are still unsure how this effects his multiple myeloma treatment as he will need a bag for possibly 6 months. It is very disappointing after working so hard to be ready for harvest and transplant to now face something completely unrelated! Like we need anything else! *rant*

I have to say last night was probably the worst night of my life so far - I thought I lost my husband. Still praying he gets through this.

[Nancy Shamanna]

Re: Cyclophosphamide (Cytoxan) side effects

by Nancy Shamanna on Mon Aug 19, 2013 8:46 am

Best wishes to you and your husband, Ulrika. He is fortunate to have you helping him through all these trials right now. Hoping that he makes a full recovery from the surgery, and then can be treated for the myeloma too.

[Jayhawkmom]

Re: Cyclophosphamide (Cytoxan) side effects

by Jayhawkmom on Mon Aug 19, 2013 9:59 am

Sorry to hear about all the trouble you are having. I understand to a certain extent. Right after my husband's diagnosis he had 2 extended stays in the hospital, one ended up being his gall bladder that they had to remove. I know how hard and scary it is. Hang in there! I will be thinking about you and your husband and hoping for the best.

[Ulrika]

Re: Cyclophosphamide (Cytoxan) side effects

by Ulrika on Wed Aug 21, 2013 2:28 am

Just to say thanks for the replies ... and an update... all still going well with my husband, he has been sitting up in a chair, walking (with a frame) and showering by himself etc. and eating well. The doctors are extremely happy with how it has all turned out... in fact today our haematologist said they think they can still do the stem cell harvest!!!!!! WOOT. (fingers crossed it works...then his chemo wouldn't have been wasted...)

He also said he is quietly confident that when his immune system plummets he will be fine, they are moving him into an infection control room for the week end.

We briefly talked about not doing the SCT now and just letting my husband recover properly and we can wait and see if and when he relapses and he will have the stem cells ready for then (that's what I originally wanted so pretty happy to wait and see how his multiple myeloma progresses...) We might like at low dose thalidomide / dex for ongoing maintenance.

Overall every day my husband is alive now we are thankful - the doctor said they seriously thought he would not make it!

[Ulrika]

Re: Cyclophosphamide (Cytoxan) side effects

by Ulrika on Sat Aug 24, 2013 2:16 am

Well - we are right in the "plummet' stage.... levels are at 0.4/5 yesterday and today (he was over 6 and 7 the other day) They have him in his own room and no visitors, just family and he wears a mask if they come in.

Overall he seems ok - tired... but I will feel better when the numbers start to go up again... he has some serious scars to heal yet. They are having real trouble getting bloods from him too, and they are not taking from the best spot (inside of elbow area) as they are trying to save them if he gets to try for a stem cell harvest. They are thinking now possibly Tuesday or Wednesday.

I know the surgeons are still a bit concerned about infection risks - our specialist seemed ok about it all still, can't say I'm not still worried though.