Your thoughts

Mellaluka

I am hoping for your opinion and advice. Mum was diagnosed with brain mets about 3 months ago. She then had wbr and started on tykerb and xeloda. She was doing ok up until 4 weeks ago. She has slowly gone downhill. The brain mets have shrunk and the tumors elsewhere are stable but she started to have no strength and more and more fatigue. She was admitted to hospital about two weeks ago by ambulance when she could not get herself up.

Ever since being in hospital she has been getting worse. The dr's are saying that it's side effects from the steroids and have been reducing her steroids.

They are saying with hard work and Physio each day she will get her strength and energy back. Mum has always been positive, motivated and accepting of her situation. Now she is lucky to say 5 or 6 sentences a day, sleeps all day, is refusing a shower and since she can no longer get up to go

to the toilet, now she cannot use the bed pan and is using an adult diaper. The last few days she

won't eat only a very few bites here and there. She cries occasionally (never cried before)



My sister and I do not think she will be coming home. We feel so guilty thinking this bit we know her and this is so unlike her. We think she has had enough. We support any decision she makes (she is too weak to even discuss it) but the drs are still saying she needs to have Physio each day which is torture to her. I don't want to make her do anything but I dont want to give up on her.



What are your honest opinions on her situation. I don't see how she can bounce back and even if she does what quality of life would she have?



I love her dearly she is only 60 and I'm expecting my first child in 7 weeks. It's a sad time but i just want some peace for her



Sorry for the long post

chrissyb

Mellaluka I'm so sorry to hear of your mum's slide and I know you don't want to do anything that to you feels like pushing her.  My suggestion is to ask her what she wants.  You can couch the questions in such away that they only need for her to give you a yes/no answer.  You could ask things like have you had enough treatment and would you like for all treatment to stop.  You will also need to reassure her that whatever she decides to do in okay with the family.  She may choose to have the treatment continue but you need to ask.

I do hope that she gets some relief and you have an easy birth.  You are in my prayers that things go well.

Love n hugs.  Chrissy

mrsnjband

Mellaluka, sorry to hear your mom isn't doing well.  Chrissy has given you good advice.  I know it's hard to watch someone you love go through this. Let her make the decision & then do your best to make her comfortable & that you love and support her.  

Prayers to you, your baby & family. NJ 

redskies

Dear Mellaluka,

I did WBR this spring, and am wondering why your mom is still on steroids at all, especially since her scans were good.  I was told to stop the steroid right after rads, that they can cause bad side effects.  I also found recovering from wbr much more difficult than the rads (no comparison) and it took much longer to recover than expected.

I had horrible fatigue while on xeloda last year, and was given Ritalin for energy which helped very much. 

I also wonder if your mother is depressed, which makes fatigue even worse.  Does she show any happiness about your baby coming soon?  Many of her symptoms sound exactly like depression.

I know, hearing the words "brain mets" hits you at your very core.  If she has always been very "positive," and perhaps believes she has to be to stay alive (there is no evidence to support this idea, btw) she may have given up hope.  Honestly, there just really is nothing positive to say about brain mets... but it isn't an immediate death sentence- women live for years with brain mets with good QOL.

I very much support the patient's right to refuse treatment, but given it seems your mom was doing ok and responded to treatment, I would want to make sure that what is going on is not due to depression.  Depression is very common in people with cancer.  Check to see  if there are any psycho-oncologists in your area, they specialize in helping people with cancer (I see one for counselling and meds, he's made a huge difference in my life.)  If not, I would set up an appointment with a regular psychiatrist (who can write Rx's for depression and fatigue meds.)

You might also want to discuss decreasing your mom's xeloda dose, to see if her onc thinks that might help.  Better to have a little progression than to have someone waste away due to depression and fatigue.

It sounds to me as if her onc believes she has every chance for getting out of that hospital, as it seem's there's been no discussion of palliative care or hospice, but rather a repeated insistance on daily physio.  Why is the physio torturous- is she in pain?  Maybe just adding some psych meds and pain meds if needed might make a big difference- depression seems to make physical pain less tolerable.

I don't know the details on her history, but I hope your mom is just in a temporary bad place and feels better soon.  If she's not depressed and can say with a clear mind that she's done all that she wants to, I hope her final days are as happy, pain free, and peaceful as possible, and that you and your sister find peace in her freedom, too.

Lynne 

Mellaluka

Thanks very much for all your wise and kind words.



The latest is they have diagnosed her with steroid myopathy which essentially means the steroid dose has caused her whole bottom half of her body to become like a

Paraplegic. All her lower body muscles dont work and it now is at the point she cannot stand up as she cannot support her own weight. I have found many many cancer patients who have had the same problem - usually after brain met treatment. They have been reducing her steroid treatment and it may be that the withdrawals are causing the extreme fatigue. She is certainly more "down" than she has ever been, crying more often usually after doing something physical like attempting to have a shower. She still isn't talking much.



The onc is giving her a break from xeloda for a week, and has stopped Physio for the week as it is virtually impossible for her to do anything. The onc has suggested a nursing home stay while she recovers - at this stage it is just being talked about. The onc thinks she is one patient that has reacted bad and unusually showing not many signs of recovery. I think we just have to take it a day at a time. Yesterday she had a particularly good start to the day and I asked her how she was feeling emotionally and she said she was ok, just taking it a day at a time. She seemed happier. By mid morning it was the same as every other day. I am now feeling more positive I just hope she can get through this. It's so unfair the cancer is under control and now she is encountering the worst time she has had yet and it is from a steroid not even chemo.



Thanks again ladies for all your support

thats-life-

hi mellaluka, that is so unfortunate isnt it...but then there is hope of a recovery, it must have been great to see her happy, if just for a little while. im not sure if you post on the stage IV thread, but please do, as you will find support for yourself from others who have someone they love going through this, and many supportive people there with heaps of information....

re palliative care (as you posted in this forum), i had my first visit today actually with the palliative nurse. on advice from others here and my onc, i decided it was a good thing to link in with the team...doesnt mean i will be needing them for much help yet!, but the nurse has made me feel so much more at peace. there are heaps of services available with them, in australia it incorporates much more than hospice. just her telling me that i now have access 24hr a day to a community nurse who will visit if im unwell, and is looking into  physio, counselling etc for me, and even my daughter if she needs it,, has eased some of the stress i live with...so do consider chatting with your onc/the team and your mum about this option...wishing your mum a good recovery, and wishing you strength and joy in the time ahead x

mthomp2020

It might not be a bad idea to contact hospice to see what they offer.  There's beginning to be more of a trend here in the US to use hospice/palliative care for help with pain control and side effects, rather then strictly end of life.  They apparently have been doing this in the UK for some time.  It makes sense, since they understand the issues stage IV patients face on a day-to-day basis, and that sometimes the treatment staff don't always know how to handle some issues.

Hopefully getting off the steroids will really make a huge difference for your mother, and she'll start to improve.  I know Xeloda can be really bad for causing fatigue, so it's good the doctors are giving her a little break from it.  Sometimes the treatment can be worse then the disease!  I'll be keeping my fingers crossed that she starts to feel more like herself soon.  She obviously had a good response to the wbr, and tykerb has been shown to shrink brain tumors, so if she can get some qol back, she could enjoy her life.  I wouldn't blame her for getting depressed in her current situation. 

dogeyed

Do me a favor.  Have the doctors in the hospital doublecheck her blood cell count.  The two chemo drugs she's been on can cause a drop in those counts, and thus make her extremely tired.  See, she may have TWO conditions ruining her health.  I'm glad they're tapering the steroids, but I wish they'd do it a lot faster.  There ought to be SOME mild drug she can take to counteract the withdrawal effects from the steroids, too.  And obviously since she has improved since they stopped one of her chemo drugs, this speaks to the wisdom of getting her off whatever she's on, and starting over at some later point in time as long as they watch her blood cell counts and avoid the myopathy she ended up with by taking steroids.  Best wishes for you, your sister, and your mother. 

apple

I had a brain issue (not mets) but I was on some debilitating meds (Along with xeloda) and basically spent a month on the couch.  My onc. mentioned a blood transfusion, took me off the xeloda for a while.. that was the best.. xeloda is one tough drug.  I sincerely wish you the best of luck with your dear mother.  I am back on both tough drugs and doing pretty well, altho my physical adeptness is rather loose.

chainsawz

I hope the reduced steriod will give your mom her energy back.  I'm on 60mg of pred a day for my radiation necrosis from brain mets treatment 2 years ago and I don't feel very zippy at all.  It helps to know what to look out for...thanks for posting!  lisa

Jadai

This sounds exactly like what happened to my mom.  It turned out she had an extremely small spinal tumor the whole time.  She was immobil for so long she started to get massive infections and that is actually what ended up causing her death.  I hope you figure this all out.  It is so hard.  Please feel free to PM me at any time.  I have beenexactly  where you are.  (((Hugs)))

Mellaluka

Hello ladies



Mum has now been moved to palliative care. Last week they didn't think she would make it through the night, but she did. They gave her a big dose of steroids to try to get her to respond and the next few days were good. I live 1 hour flight away and came to her bedside. I have sat with her for the last week and she is not good. A couple of days ago in one of her moments of being awake she said she didn't know what do, should she go? Then she fell asleep. She said it twice. I think she is waiting for the baby to come as I am due with my first in 5 weeks. I told her whatever she wants to do I support her, i want her to be ok and not to worry about me or he baby. She asked for my sister and her partner who came to visit her. Since then she hasn't eaten more than a mouthful of food. The drs say no more treatment. The scans are stable and she should have had some results from the withdrawal of steroids. She has been in hospital for 6 weeks. There is more going on that they can't find. They can do more tests but even if the results find something they can't treat her as she is too weak and her platelets are low. She has not spoken for two days, she is not in pain but is restless when she sleeps. Today they moved her to the palliative care ward. They are waiting for a room in the hospice to become available. Now it is a matter of being by her side and just sitting with her. I am due to fly home next week as I cannot fly any later in my pregnancy, it is all so hard. Sorry for the detail, I am sorry if I have

upset you lovely ladies. Thanks for all your support xo

chrissyb

Mellaluka, it sounds like your mom is on her final journey and if she is not in pain, it is a good journey.  Perhaps she will hang on until you have your baby but please, don't be surprised if she doesn't as sometimes we have no choice and she is being called hence her question about going.   ((((((hugs))))) to you and your sister in this time of great difficulty.

Love n hugs.  Chrissy

Mellaluka

Thanks Chrissy, i think you are right. I made peace awhile ago about her not being here for the baby. I am ok with that, I feel guilty that she may be hanging on for me and i don't want that. I have told her she will always be with me and vice versa wherever ever we are. I just want her to be at peace like she deserves. xo

Mellaluka

Hello ladies,



My mum Angie passed away on Monday Aug 15. She died peacefully in her sleep with my sister holding her hand. We all had the opportunity to say goodbye. Most importantly mum was able to say her goodbyes to us and to say a few things she needed to before passing.



Her funeral is this saturday and my sister and I have organized a beautiful send off for her. I know she would like what we have chosen for her. I'm going to miss her so much.



Thanks for your support. She is a peace now.



Melinda

marie5890

Melinda,

Hugs to you and your family. Im glad she got to say what she needed before her passing 

Bren-2007

Melinda .. I am so sorry for you loss.  I know you will miss your mom so much.

Sending you hugs,

Bren

HansieDZ

Melinda,

May God hold you in the palm of His hand.

Your little one will surely have an Angel to watch over him/her throughout its life.

reesie

Melinda my prayers and condolences go out to you and your family.

bak94

My heart goes out to you and your family. Your mom was very lucky to have such a wonderful supportive family, and that says a lot about how wonderful she was also. Hugs to you and your family.

Leah_S

Melinda, I am so very sorry for your loss. My condolences go to you and your family. May G-d send you comfort.

Leah

TooManyCocktails

Sorry for your loss.  I'm glad to hear that you were with her at the end.  Try to remember the good times.

thats-life-

melinda, i wish you joy with the coming of your child, and peace in your grief for your mother xx