If you are not Stage IV but have questions, you may post here
Comments
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Alyon- suspect steriods.
Disclaimer*** I am not an MD or DO
You mention briefly that your mom has been on steroids and now they are tapering her off? That is what signaled my post. There are a lot of emotional behavioral changes associated with steroid up to and including breaks with reality that can be researched as "steroid psychosis" If your mom's behavior is unpredictable it stands to reason that the regularity/reliability of her taking meds might also be in question. She could double-up, not take meds the whole gamut. Its very stressful from the sound of your posts and hopefully with some medication review/reconciliation things can improve
I did a quick lit review and symptoms like you describe are typical with doses 40mg/day or greater.
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My question is about Perjeta. I am Stage 2B, being given TCHP as adjuvant (not neoadjuvant) treatment. This is new and I have not been able to find data on Perjeta SEs elsewhere on the Boards. It was recommended that I post here, as more Stage 4's may have had experience with Perjeta.
I'm having a nasty face rash that appears as either chemical burns or angry red bumps. It morphs to open wounds, scabs, and eventually dry skin, it is accompanied by bright red hot cheeks ( hot to the touch but no fever) and red hot ears. Perjeta rep said mild rash is an SE and rare to have serious rash, has anyone else had this SE fr Perjeta? (It's not enough to make me want to stop the targeted drug, but I'm not sure how to treat it and whether it gets worse or is scarring, I'm about to have round 2 of chemo). Thank you for any intel.
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Hi Formydaughter, have you spoken to and shown your onc the rash at its worst? From what you describe it sounds more like an allergic reaction rather than just a rash and really needs to be checked out by your doc not the drug rep.
I'm sorry I can't be of more help, hopefully some one else will be able to step in.
Love n hugs. Chrissy
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Does anyone know the symptoms for abdominal or peritoneal mets please?
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yes, I've been giving my onco my daily symptoms list. He's aware of the rashing. I also had an allergic rxn to the Taxotere, so it could be both. Makes me smile - when they ask you about known allergies on the med forms, I always had nothing to report. Now I think I'll be saying "chemo" ha! Thank you for answering, Chrissy, I hope I find out about Perjeta SEs.
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ForMyDaughter - I had 6 rounds of chemo last year that included Perjeta. Since it was also Taxotere, Carboplatin, Herceptin & Perjeta, it was hard for me to isolate the Perjeta SEs. Then I had two rounds with Herceptin & Perjeta - but I still had too many residual effects to determine. After surgery I had 3 rounds of Adriamycin & Cytoxan. Since my neuropathy is so bad, the MO & I decided not to start back w/the Perjeta right now so I'm having only Herceptin for a year - along w/rads. His comment was to "keep the Perjeta in reserve". I did talk to an MDAnderson doc at a Metatistic BC seminar & she assured me neuropathy wasn't an SE even tho it's listed on their web site. Not sure I made the right decision but just couldn't deal w/anything that might effect the neuropathy adversely.
There is a Stage IV site that discusses Perjeta, Herceptin & Tax. I lurk on there for knowledge since I'm not Stage 4. But there just isn't much info yet.
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Well then. I just
wanted to let people know, since I posted a lot of questions on this board, and
am forever grateful for all the information.We discovered that my mom's confusion was due to a urinary infection. The antibiotics picked mom up and she was feeling very well. So
well, indeed, that she received her second 6th cycle of chemo on the
26th.The weekend was bumpy,
since she was a bit down and tired. Doctors checked her out, and said that she is
currently fine, and that it is due to chemo. She was on a diuretics for her leg swelling, and we were
supposed to go in to neuro rehab within the next week.On Monday she woke up
due to labored breading. I called an ambulance, but they said that even though
there was blood in the secretion she coughed up, because of the mucus color
they suspect an infection. They told me to report to her primary physician so
they could administer at home antibiotics via IV.It wasn’t an
infection. The paramedics were wrong.She had a pulmonary
embolism.While I was gathering
the paperwork, she grew unresponsive. I noticed her breathing was getting more
difficult. I tried calling the ambulance again, and while I was on wait, she
stopped breathing altogether.I started reanimation,
and covered myself with the coughed up blood, waiting for the operator to pick
up the call and freaking help me.It was a horror movie
scene.I stopped reanimation
20 minutes later. She died.I screamed the roof
down.The paramedics arrived
45 minutes later, and declared time of death.0 -
AlyonA,
Sincere Sympathy for the loss of your Mom. You were the best daughter, we know you tried so hard to get her the proper medical care.
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Oh Alyon, my heart goes out to you. I am so sorry for your loss. You are the best of daughters and I feel your pain and anger at having to see your mum go through all of that.
She is no longer struggling for anything, she is at peace.
Love n hugs. Chrissy
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Alyon. So very sorry for your loss.
I saw your frantic posts for enlightenment into your mam's symptoms but could not give you any advice. You have had a terrible time. You were so wonderful to your mother, I hope you take some time out now to rest yourself and get back some peace and hope in your life - you deserve it. Remember you did everything and more that anyone could do to help a much loved mother and she is now at peace and loves you even more because of what you did.
Blessings,
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Oh Alyon, I am so sorry to hear this. How Horrible for you and your Beloved Mother, You are in my prayers, God Bless You ad Your Family!!
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Alyon,
Your post made me weep, I can not imagine the shock and pain you are feeling. Your concern and love for your mother has been so clear in everything that you have written that the depth of your relationship with your mom has been apparent to all of us. I am so very, very, sorry for your loss. I am holding you with gentle hugs in my thoughts.
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Dear Alyon, you are a wonderful daughter! Prayers for peace and strength during this difficult time. Kathy
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Alyon, I'm so very sorry for your loss, and the trauma you went through leading up to it.
I would be so angry with the paramedics. Anytime there's bleeding involved, it should be taken seriously.
You are a wonderful daughter. Please be good to yourself.
Paula
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Alyon - my thoughts and prayers are with you.
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Alyon, I am so very sorry for all you have had to endure! I wept reading your post. My heart just breaks for you! You were a very loving and attentive daughter. You are in my thoughts and prayers.
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My heart breaks for you but my mind is yelling "Utter Crap' You did all the right things to get care for her and these professionals let you down. You had such a trying time with her but you were working through it and getting the help she needed. Then to have to go through this on your own and know that this time you can't save her.
I would still be screaming. For your mum, this trail of this world is over and the pain and confusion is gone. But for you the grief and anger is just beginning.
Try and be gentle with yourself. You know you did above and beyond what you could for her and she loved you.Remember the really good times and try to put the end out of your mind.
It can't be changed no matter how it shouldn't have happened at all. But not let it ruin the very good memories you have.
Peace and blessings to you
Moira
P.S. I still call bush*t on this.
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oh AlyonA, I am so sorry to hear that. My prayers are with you.
Pat
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{{{AlyonA}}}
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My dear Alonya,
Oh my word, I was so so shocked to read this. I am so sorry that you had to endure all this. You are such a lovely lovely girl and my heart goes out to you. I know you were devoted to your mother.
Please know I am thinking of you.
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.....what moiralf said. exactly. My first thought was"is this for real?!?"
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AlyonA, I'm so so sorry. We grieve with you.
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I'm wondering if it is real too....maybe because I just can't wrap my mind around this happening!
I'm very sorry that this has happened to you. I've lurked on this thread for a little while now and saw your original posts about your mother. It's completely tragic and I'm not sure how you are holding up. ((hugs)) you were a wonderful daughter. It makes me especially sad because my own daughter has been zero supportive of my dx.
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Alyon, my heart and lovingkindness go out to you - I hope you can feel all the loving arms from this community surrounding you in your grief. You have been a wonderful daughter - much more than any mother might expect - please be kind to yourself, remember the good moments you had together. Cry and cry until you can cry no more, then rest, knowing that you are loved, even by people who have never met you.
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Lily55, I am not an expert, by any means, but I have ILC and I have done a lot of research about the unique ways that ILC can metastesize. Bloating, acid reflux, and feeling full too soon are symptoms that you should not ignore. I would also report any sudden and sustained change in bowel or urinary habits. Of course these symptoms can be related to other issues as well, so don't freak out!
MsP
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what sad news xx
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Hi, I have a question about bone mets. I have been having a lot of pain in my joints, bones etc. since finishing chemo and being on tamox. I have arthritis and I also know that tamox can cause all kinds of fun SEs. I had a bone scan and a CT scan done in February of 2013, after I had finished radiation, and everything was negative. I have had an xray and mri of my right knee, and all these tests just say arthritis, noncancerous degeneration, etc. I have been having fairly persistent pain for the last several weeks which feels like bone pain on my left leg which is worse at night. I also have been having pain in my right butt starting a couple of days ago, feels like a bruise deep within, but I haven't fallen or anything. I am getting kind of freaked out... I have an appointment with MO on 3/17. I'll try to get in earlier, but I basically have two questions, if anyone could be kind enough to answer. First is, does this sound worrisome to you? And 2nd, what kind of tests should I be bugging MO for? I read that a bone scan can rule out one kind of bone mets but is not useful for another kind, and also at this point it was over a year ago. Help! Thank you.
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Hi Cypher, sorry you are having so much pain. One of the first questions asked by the docs is, is the pain worse at night and I read that you have already answered yes. This is a fairly good indicator that things need to be looked into and scans done to rule out mets.
I have bone mets and always the best scan for me has been the bone scan if this shows anything new, then a CT to follow for more detail.
I have lytic lessions which is where the bone gets a honeycombe appearance. The other type is Blastic where the bone gets very thick with what look like lumps.
A bone scan will as you have already found, show any degeneration of bones from arthritis but is really good at showing up abnormal activity so usually is the first one ordered.
Keeping my fingers crossed that what you are feeling is arthritis related but if it's not, please know that having bone mets is not the worst thing as it is possible to live a very long life with them........I am 8 weeks shy of five years and doing very well.
Good luck!
Love n hugs. Chrissy
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cypher, have you ever tried taking Claritin to combat the bone pain? I take the generic, Loratidine for bone pain associated with arimidex. I get it at Walmart for about $2.49 for a 10 day supply. I still have a bit of stiffness when I first get up, but don't have all that bone pain.
I also have degenerative joint disease, which generic Tylenol helps.
I take it in the morning with my arimidex. It's an easy way to find out if this pain is caused by tamoxifen.
Paula
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you guys are so helpful, I really appreciate your responses. I will try the claritin while I am waiting to get in and see if that helps. Fingers crossed! that's a huge understatement of course.I have had sciatic pain in the past, and it could all be that other stuff. I had a tumor marker done in the late fall and my number came back very low.and I had a bone scan done in a year ago. Of course something can always appear.... this is such a scary scary disease! Chrissy I am so glad you are doing so well. I am confused though, your diagnosis says you were diagnosed in2003? ugh, I had a tumor around the same size as yours and was also node negative, but her2 positive unlike you.
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