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Clare UK

No-one to talk to ...

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the thing is you have to be very very positive up front for scan results.. but the little what if in the back of your mind has to be prepared in case....Hoping for great results... let us know..

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Thanks everyone. Quick question though if anyone is able to offer suggestions.

Just before Christmas, she told me she hadn't felt hungry for months, but apart from a few days after her chemo, was eating relatively okay. Not because she was hungry, but because she knew it was mealtimes and she had to eat. Hope that makes sense.

Over the last 7-10 days, mum has been suffering with nausea and vomiting and not eating very much at all. Maybe a bowl of cereal and a few biscuits each day. I think though that she has stopped eating the cereal most days. And when she does eat it, she's normally sick a little while after. I gave up nagging her to eat as this was just making us both upset and I don't want to make a big deal about it. We chat about it and she is taking fluids. We spoke to the onc a little over a week ago and he gave her steroids to boost her appetite and stop the nausea, but they aren't working. Also, anti sickness drugs don't help her. She has meal replacement drinks from the hospital but most days, I can't get her to have these either.

In 6 months, she has lost 21lbs - thankfully she had a bit of weight to lose and is, for now, sitting at a perfectly healthy BMI but she can't afford to lose much more weight. The doc already has her at high risk for malnutrition.

Anyone have any suggestions? Or do I just have to wait this out until she feels like eating?

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Clare,

When my husband was on chemo he didn't want to eat either. He didn't care much for the ensure supplement drinks but I would blend them for him with different kinds of fruits and even ice cream. It made a big difference and he actually enjoyed them. Perhaps you might want to try that. Also, try to keep plenty of water in her as well.

Let us know how it goes (((hugs)))

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Good idea. Will give that a try. Had tried mixing the fruit juices with lemonade or sparkling water to no avail but perhaps a smoothie would be better.

Just doing some research on anti emetic drugs - currently dextramethasone and metoclopramide are not providing any relief.

Has anyone here got any experience of taking Olanzapine?

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I never tried Olanzapine, but did have some relief with Zofran and Phenergan. For me what I think helped the most was when a member here suggested I take them on a regular schedule instead of waiting until I felt sick. That did help somewhat. This seems to be one of those "trial and error" situations. Hopefully, the Olanzapine will do the trick.

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Mum was prescribed cyclizine in the end and seems to be working better than the metaclopramide ever did.

Lots of news though. The steroids never really improved her appetite but a recent visit to the oncologist and he has increased the dosage again and for the next week she is taking 8mg.

We have seen a rapid decline in mum's health though and scan results yesterday confirmed that just 3 months after her chemo finished, the cancer has grown again and is worse than ever. It's too short a timespan to give her the same chemo drugs as before which worked so well so instead she will start topoteacan next week. It's tablet form so will be taken at home for 5 days from 21. Some concerns over whether she's well enough to withstand the side effects though ;(

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you have to honor Mums decisions of course and yes it is hard to deal with this one... the best thing you can do is be there. now also keep in mind that pain control is next biggest priority. she should be on some sort of pain med regiment to tolerate the pain..

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I understand and respect your Mom's decision just as you do. It's very difficult to endure the many side effects of chemo for her no doubt. I remember when my husband was undergoing treatment. Sometimes I think the treatment for some is actually worse than the cancer itself. No doubt there are some who will disagree with me but I understand. Best wishes for your mom and yes, I agree with Randy on making sure she has no pain. ((hugs))

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Thanks guys. She has an appointment with the cancer nurse tomorrow to discuss in more detail but she is 99.9% certain she doesn't want to go through a new type of chemo. The oncologist already advised that side effects are much worse with this second treatment.

The first treatment was a great help and gave her a much improved quality of life for around 4 months. Now though the cancer has really kicked in and she is so unwell that I doubt she would be strong enough to go ahead with more than 1 or 2 rounds anyway.

I guess a big part of tomorrow's appointment will be what will happen if she doesn't take the chemo. Neither of us have really gone through this with anyone so not knowing what to expect is a huge fear I have right now. As for pain control, currently she takes Tramadol and liquid morphine. However, the nurse is already looking to transfer from Tramadol to a longer lasting morphine based painkiller.

I'm just happy that she felt comfortable to discuss this with me. Although it was the most difficult conversation I've had in my entire life, so often she tries to put on a brave face and not let me know how bad it really is. Just leads to shocks at the oncologist appointments because the stuff she tells him is news to me too at times.

I will support her fully whatever she decides. I would hope the rest of the family will too. I just pray that if she does decide not to take any more treatment, as hard as it is for us all, and as much as I don't want to say that final goodbye, that the end is as quick and pain free as possible for her.

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take a look at this posting and in this forum for some more ideas.. lots of info in here on this topic as this forum was created for jsut that option of treatment. it is a very ahrd one to make but there comes a time and we ahve to respect those wishes of course..

viewtopic.php?f=44&t=39496

http://www.lungevity.org/l_community/vi ... p?p=364955

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Thanks Randy! I guess for me, just coming here and typing away helps. I still don't really talk much to anyone about how I feel.

As my partner and I found out last week, this isn't really the best approach. The day before scan results, he asked me to make him a cup of coffee and I had a complete breakdown. Screaming that he expects too much, doesn't support me. I'm embarrassed to admit that I was punching and kicking him before I collapsed in a sobbing heap on the kitchen floor. Bless him, he just gave me a big hug and let me cry. Thankfully I didn't hurt him. But I've never been a violent person, I've never hit anyone in my life so I was mortified afterwards.

So now, I'm trying not to bottle up so much and I guess if posting here doesn't help, then I'll visit my GP about counselling...

(Hugs) to all!

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I also have found out that long talks with god or whomever you spiritually look to are also healthy for the soul. you can say anything at night under the stars and get it off your mind...this also helps relieve things a bit...

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Clare....I myself know what a toll it can take on you when you're unable to talk and vent your feelings. Watching a loved one endure cancer will take it's toll on you as well. You must also think of yourself during this time and please please please talk to anyone, including us how you're feeling. I was so alone and had no one except my friends here at lcsc and I can honestly say, they truly saved me from going insane.

Share with us anytime! ((hugs))

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Well guys, a bit of an update. Mum has changed her mind about the chemo treatment. I'm not entirely happy about it, purely because I think that her mind was changed for her...

When she told me, there was lots of talk about how she felt selfish for not trying the chemo after she spoke to my stepdad.

So, off to the hospital we went today. Her new chemo treatment is Topoteacan - may have spelt it wrong. It's an oral chemotherapy drug, so she gets the tablets from the hospital and takes them at home for five consecutive days. Another 21 day cycle with a maximum of 6 cycles.

So, keeping our fingers crossed and trying to stay positive. It has just a 15-20% success rate, but who says mum can't be one of those people. She took the first tablet today so I guess we'll find out over the next few days about how bad the side effects are going to be.

Also, the Macmillan nurse ordered a wheelchair for her this week which will be good. She rarely leaves the house these days but only because she feels too tired walking. So, with the wheelchair, we're hoping we can at least take a short trip around the shops together.

Fingers and toes crossed and I'll keep you all posted.

Hugs

Clare

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Hello Clare:

I am retaining hopeful thoughts for your Mum -- I can certainly understand that she may not want to undergo treatment for herself, but she may feel that she has to make the effort for your stepfather and/or for you. The wheelchair may give her morale a pickup, because right now she may be feeling "trapped" because of her immobility and wondering whether even trying anything else is useless and won't improve anything, so the wheelchair may give her greater freedom of movement and the opportunity to feel a bit more normal, even if only because she can get out and about in it.

It is such a tough thing when she has already been through one set of treatments and felt terrible, and now seems to be headed into another round which may make the side effects she already has experienced worse. But as Randy says, we do need to respect the individual's decision. Just be sure that she knows that she should make her decisions based on what she feels is best and not on the reactions of others, and that you will be there to love and support her, whether she continues on the Topotecan or not.

I also agree with Michelle about the toll that caregiving at this stage takes, and your idea about getting counselling for yourself sounds like a good idea to explore. I also hope that your stepdad is giving you some break time for yourself or that other family members are, or can do this.

Feel free to vent at any time. That's certainly one reason we are here, and many of us have been on the caregiver side of the equation, so we are here for you!

Jane

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Hi All,

Mam decided to give the new treatment a go but the side effects were so bad for her that she didn't want any more.

A neutropenic score if 0 and a week in hospital recovering were just too much.

Five short weeks later, she was suffering dizzy spells and after a fall at home, we took her to the emergency room on Tuesday.

Severely dehydrated, they put her straight on an iV for fluids. With no fluids coming back out, despite a catheter being fitted, a scan on her kidneys revealed that there was no blockage but the cancer had spread. With no further treatment available for her, she was made comfortable and, with family around her, she died quickly and restfully yesterday evening, 10 months and 1 day after her diagnosis.

At the same time as being devastated, I am so very thankful that when the end came, it was quick, almost virtually painless and she had very little awareness at the end of what was happening.

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Clare.

I am so sorry to read of your Mothers passing,it was indeed a blessing she passed peacefully without any discomfort.Please accept my condolences for your loss.

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my deepest condolences and thoughts prayers and hugs for strength to the Family and friends. It is so hard ot know what to say in this moment but know that we are all here if we can help with the grieving process and venting process at all... I am so sorry for your loss..

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