Hello to everybody again. I haven’t been on here for a while as have been very busy looking after my Mum and moving myself up from London to Cheshire back in with my parents (quite an upheaval after 8 years!!).
Everyone has been so kind and offered much support since my Mum’s dx (brain, lung and bone) back in October and I wanted to wish you all a very belated Happy Christmas and to send you my very best wishes for the new year and 2009. I hope it brings much luck, love and support to all of you. I hope to post more in the new year and to share yours and my experiences. It helps me and my Mum a great deal to hear your stories.
The initial shock has disappeared now and we are all dealing with this as best we can. It still doesn’t feel like it is happening to us though. My Mum completed 10 sessions on WBR in early December and she did fantastically. After a few weeks off for Christmas she starts her treatment of Taxol and Avastin tomorrow. We are all nervous and I know Mum is particulary scared but she remains very upbeat. She is in for 12 hours tomorrow. Is this normal for the first session of chemo?
Any suggestions as to how I can keep her entertained?
I hope you have all managed to enjoy your Christmasses as best you can.
Sending you all much love and best wishes.
Hi SunnyBear
Merry Christmas and a happy new year to you and your family. Glad to hear your mum is doing o.k. I can understand your concern re taxol and avastin I started it in Feb and carried on until May had a chemo break but had avastin every 3 weeks with pamidronate for my bones went back on taxol in Nov so I have that with avastin every 2 weeks. The first treatment for me was a very long day indeed plus the stres and panic of what could happen I am pleased to say all went well no nasty side effects. I started a thread Back on Taxol so when you feel like you can catch up on how things are going for me. Wont bore you with it.
I take mags and my husband comes with me, mind you I send him off with a shopping list now so I dont have to drain myself. You could take a dvd if you have a laptop. My hospital provide lunch but I was far too nervous on my first infusion. Good luck with your mums treatment.
Glad to hear your mum is doing OK.
Often with a new chemo like taxol, they keep you in for longer just in case you have an allergic reaction - rare but you’d want it to happen in hospital and not at home. With taxol, as there is a risk of allergy, they give intravenous piriton which makes you very sleepy so she may well sleep for some of that time. I don’t know anything about avastin - Debs above is an expert there.
I hope your mum has a bed if they are expecting her to stay in for so long or at least a recliner chair. I quite like the recliner chairs. I also hope they give your mum food. It varies between hospital if they give drinks to visitors but I think most do. Check up on if you get parking charges reductions as well.
Hope all goes well.
Katr
Hi…Good Luck to you both today…like Kate I wondered if your Mum might be given piriton…I haven’t had it but was with a friend who was having chemo with piriton and it made her very sleepy. She woke once and asked for a bar of chocolate but then fell asleep again without ever eating it.
My hospital (NHS) offers free drinks and food to the patients and their relatives/friends who are with them.
Hello, I’ve just come back from the hospital (9.30pm) and poor Mum us still there and only half way through her Taxol with another hour to go and then 2 hours of Avastin. There were a few hold ups as the machine which tests bloods for liver function wasn’t working and they had to wait for an engineer to come and fix it, then they got her weight wrong and the dose of Avastin was too big so they had to get approval from the consultant to change the dose and he was on holiday today and then her Zometa has been missed off so they had to get further approval for that also. So, after a 9am start she didn’t actually start until 3pm. She did have her own room though so she had a bed and a TV to keep us entertained (I think playing with the bed more than the TV!!).They filled her with all sort of pre-meds, including as you suggested Piriton. It did make her sleepy but she was determined to carry on doing the crossword. Mum was an absolute trooper and was so patient all day. I was so proud of her. Not sure how she’ll be when she gets home later tonight though!
Thank you all for your responses and well wishes. Debs I had a good read of your ‘Back on Taxol’ and I’ve printed it out for Mum to read. Thought she’d particularly appreciate the ‘bunged up’ bits as she is suffering terribly with this at the moment. You sound like an absolute star and have been through so much and still come out smiling and joking. I hope my Mum is able to do the same. Good luck with the Taxol, hope it works as well for you as it did last time.
Hi SunnyBear,
I am sure she will, if you go on the chemo part of the forum there is a recipe for go cake I do a version with figs and bran flakes and I find it works. Your mum may find she has an uncomfortable feeling in her nose a bit like when you were a kid and fell and bumped it. I find to sniff steam helps and I also blow a bit of blood up in the mornings only had one nose bleed and that was in the early days. I am here in cyberland if you need me.
Hi sunnybear I look forward to sharing your experiences as my sister has just been dx with mets in the brain and at present we are waiting to hear what treatment she is going to have…presumably your mum didn’t have an op? WBR sounds scary at the minute so pleased that your mum coped well with it. I am so scared that my sisters personality changes as to date she has been very positive etc but I can see that she is absolutely terrified this time. Hope your mum managed finish her chemo and get some rest…is she on steroids as that is another problem my sister has at the minute - she can’t sleep.
I’m really sorry to hear about your sister. It is really scary and you feel so helpless. I think having mets in the brain is immediately terrifying however I guess we just have to treat it as if it is any other organ of the body. The brain seems to respond well. My Mum was in quite a state before her brain mets were diagnosed. She was completely losing her marbles, her speech was slurred, she could hardly write and she just wasn’t the same person. However, since her dx she has been so much better. She didn’t have any surgery as I believe hers are in lots of smaller areas rather than one big one, hence the WBR. She was put on really strong steroids straight away and the effect was immediate. We noticed Mum to be much better after one day of taking them. She is diabetic also so the steroids have a massive effect on her blood sugar levels and she has to try really hard to keep them at a safe level so she has an extra worry as well. She had 10 days of WBR and it does sound scary but it happens so quickly. She was only ever in for 10 minutes at the most. It made her very tired but this was the only real side effect she had from it. It made her sick on the 2nd session but she was give anti sickness drugs after that. Unfortunately she has lost all her hair from the rads before she even started chemo. I believe this is unavoidable with brain rads though. Since she started chemo her steroids have been reduced but she has a boost via her IV when she has the chemo. They do seem to help alot.
I am sorry that your sister is having trouble sleeping. Maybe it’s worth asking the doctor. My Mum has been the opposite so I can’t help much with that one.
You both need to try and remain positive. I feel that is the only way you can be to get through it. Brain mets does sound very scary but it’s really not any different to having it in your lungs or liver etc. It can be treated and hopefully she will respond to the treatment well.
Well my sister had her appointment and she found out that she also has a spot on her lung so she is having to have 5 lots of rads then chemo again…how I hate the fact that she has to go through all of that again - it seems that we are not meant to have any respite in our family (I have just finished my chemo and was hoping that we were going to be trouble free for at least a few months!) Anyway as you say we just have to get on with it as there really isn’t any alternative. The good news is that her steriods have been reduced so she at least is getting a bit more rest.
How is your mum - I hope she is picking up and tolerating her chemo. How often does she have to have it? I must say from what you have said she does seem to be quite a star the way she is taking it all but I dare say the support she gets from you helps her along the way…I do believe if you have plently of support it does help and if you can discuss things it is a bonus. In a way I think that my sister though she confided in me before finds it easier to do so since I was Dx as she feels I can empathise more. You have helped by telling me your mums experiences with the rads and some of your mums symptoms were similar to my sisters though she does only have one area affected (and the only symptom she had is that she couldn;t write out her Christmas cards properly) Knowing my sister I believe she will also sail through and hopefully both of them will continue to do so.
XX