Australian Sisters
Comments
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Kate, we all know how hard it is to make a decision about chemo if you have a small tumour.
Get the onc to give you the stats from Adjuvent Online about the potential survival benefits of each treatment.
You don't have to decide tomorrow and it could help to get a second opinion from an onc who is particularly experienced with HER2.
Sue and Trish have clear views but check with the ladies on thr HER2 forum and any research articles or info elsewhere on this site.0 -
Trish, no problem so far. Took a coloxyl-senna the night before. Took 2 last night and today was pretty normal ;-)
Drank 1/2 a little bottle of prune juice at lunch. Think that may have been overkill as my stomach is now rumbling a lot.
My onc says going is better than not going :-)
Can't believe I just wrote an internet post on this subject!
Jenn0 -
After my nasty experience, I used to take the sennacot starting the day before chemo and never missed - much better outcome.
There was no way I would not do chemo as we totally trust our onc (he's my hubby's onc too) and if he says do it - I agree. He's probably one of the best oncs in the country according to some. I'm sure he gets asked this all the time, but my hubby asked him if he would want his wife to do it in my situation and he said yes. He's up to date on all of the latest research and goes to San Antonio every year.
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Thanks everyone.
I'm feeling better. I know deep (deep) down in my heart that I have been clutching at straws.. and it seems that it's probably a natural feeling before treatment from reading your responses. Thanks so much. I will be sleeping just that little bit more soundly tonight with what you have said and read.
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Kate - how big was your tumour?
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Suzie - It was tiny, less than a centimetre.
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Was it greater than 5mm? I do know they recommend chemo/herceptin if over 5mm. But even for smaller ones they can metastasize, so it's a hard decision to make. My thought was that if I do the treatment and I end up with mets, I won't be sorry because I tried everything I could. Better than looking back and wishing I had done it.
(((((((HUGS)))))))))
Sue
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How are you doing Chrissy?
How are you today Jenn?
Thinking of you both.0 -
Yeah, I'm with you. I think one was 4mm and the other 3mm, so I guess if you combine them then thats 7mm. I'm having my first meeting with the MO in about an hour. It will be interesting to hear what he has to say... although I'm not expecting (but I have a little sliver of hope) that he'll say it won''t be necessary.
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Hi all! Sorry I didn't post yesterday but byt the time I got home I was exhausted! I even had to pull over a couple of times on the drive as I could feel myself drifting.....not good!
Well the decision has been made to do nothing at this point in time. The only one the doc was concerned about was the one at (not T5) T7 and said that should I start to have major pain with it then he will do rads but the others are so small that to change to a new med now could be a bit of a waste and I agree with him. We are now aware that they are there and will follow any further progression. The main worry was the possibility of a large lesion in the long bones but they are all okay. Breath a sigh of relief as I was not looking forward to having to take an unknown drug and go through all the SE's again as Femara is very kind to my system. Well enough about me..........
Jenn, how are you feeling today? sure hope you are doing okay.
Kate do let us know how your meeting with the MO went and I sure hope you get the answers you want.
Thanks for all the support girls, much appreciated.
Love n hugs. Chrissy
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Chrissy - it's good to know you are home safely. Sort of good news, but still I wish you'd had no progression at all. ((((hugs)))))
Jenn - how are you today? Hopefully relaxing and feeling ok.
Kate - looking forward to hearing what your onc has to say.
Trish
xoxo
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Chrissy - Aromasin is proving to be OK for me so far - 3 months under my belt now. I do feel like I have more energy than when I was on Arimidex. I hope you don't have to do rads. Has he mentioned Zometa infusions for you? I hate this bloody disease, it's just not fair.
Kate - hard decision as I said, but then I read of one lady on here with a 2mm tumour, no chemo/herceptin and now she has mets a year later. Good luck with the onc meeting - hope he's nice.
Trish - hope it's a bit warmer down there today. We've finally cooled down but it's still humid.
Sue
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Chrissy, I was worried about you since you hadn't posted for two days! I'm glad you were able to discuss things with the onc and are as happy as you can be with the plan he proposes.
Sue's question about Zometa is pertinent. I am seeing my onc on Tuesday and will ask about it for my situation. He is very sure of his opinions so I am interested to see what he will say. In October, he said I didn't need it as my bones are ok. But that was before San Antonio.
Have a great weekend ladies!0 -
Racy - my onc lied to get Zometa for me - ssshh. I've had 3 so far - next one in March. Being post menopausal, I do believe he's given it to me for prevention of recurrence rather than strengthening my bones.
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Ok, I won't mention that to my doc. Mine is quite flexible but as you say maybe the PBS isn't.
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You have to have osteoporosis or a fracture to get it. My bone density wasn't too bad for my age. I'm not going to argue with him - I love him for doing that. Of course taking aromatose inhibitors can cause osteoporosis, so I'm glad for that bit too.
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I'll be staying on the Femara for now and hopefully I'll get another year before needing to change. Being grade 2 means its not very aggressive so it should be possible but we will be keeping a close eye on it. The rads will be used if neccessary for pain relief on the T7 should it begin to worry me too much. I'm used to pain in that area as I had a very bad car accident 37 years ago and damaged my spine that it left me with pain for all those years but I have become so used to it, that unless it is particularly bad, I don't feel it so that's why I never took much notice of the pain I have been having.
We haven't discussed Zometa or any of the bisphosfinates as he tried me on the oral bonefos when I was first dx'd stage IV but after only a few weeks I had to stop them as they gave me so mush stomach pain it wasn't worth taking them. So far so good with the bone density though, the last DEXA, which was done last year showed only a little osteopenia in the lower back the rest of the bones were still as strong as a thirty year olds. 'The research I have done also says that they can be a double edged sword in that if used for a long period, they can make the bones so hard that they become brittle and can break anyway. I think I'll just take my cue from the results of the next DEXA that I have and take it from there.
I had come to terms with the fact that this disease will continue to progress for me and I live with the thought each time I go for a checkup that that time could be the one where we find new ones. This time we did but I am okay with that. I think my family reated far worse that I did but I can't say I blame them for that.
Hope all are doing okay.
Love n hugs. Chrissy
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Make room for me on the chemo lounge please... Yep, first infustion of FEC x 4 starts next Friday! then Herceptin and radiation. So I should have my last infusion end of March. DO-ABLE!
Gosh, just having the unknown known has made me feel better. I don't need to write this whole year off. There is light at the end of the tunnel. I am HER2+++ The MO said it was the most aggresive kind - hence he didn't have to persuade me to undertake the therapy.
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Oh Chrissy - all I can do is send you lots and lots of hugs, and let you know I'm thinking of you.xoxo
Kate - just FEC? No Taxol or Taxotere? FEC is 100% doable - at least it was for me. That's what Jenn is doing too. Glad it's all starting to happen for you - not knowing is worse I think. Did you discuss a port?
Trishxoxo
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Thanks Trish, much appreciated.
Kate, sorry you need to do the chemo but as you say, it is do-able. As Trish asked, have you checked about a port? It will make the whole thing a lot easier and save your veins. Good luck with your first on Friday.
Love n hugs. Chrissy
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Doh! No I forgot to ask about that. But I am doing the chemo education class on Monday so I will mention it. I figure once they know I have timid veins they will think of that anyway. But I will ask. I am relieved that I'm not doing the taxol too.
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Hi all,
Not such a great day for me...
Nausea was pretty bad in the early hours of the morning but managed to hold out to take my last Emend at 6am and took a maxolon not long after. Saved my last Kytril till 10am and have not had anything since but have been feeling pretty queasy all day.
Last afternoon my port felt so comfortable I forgot about it when I took my glasses off and stretched behind me to put them on the bedside table. Major ripping sensation and a good minute or two of pain and it just hasn't felt right since :-(
I developed thrush on my tongue overnight as well so this morning it was off to the hospital to have them check my port and deal with the thrush.
Two xrays showed the port bits all still where they should be and the chemo nurse re-accessed and locked it to show that its still working ok. Good news but it is now very uncomfortable.
So, today has been spent mostly in bed or on the couch with one short walk after lunch that my husband persuaded me to do.
I'm very scared about how bad the nausea is going to be tomorrow because I have nothing left except the maxolon and gingerale and some ginger chews my hubbie bought from the supermarket. And tomorrow is Sunday so the chemo dept is closed and I would have to go back to emergency if it gets out of control...
I'm still shocked that here in Australia we are sent home with so little for the nausea. On this board the US women all seem to have so many options :-(
I wish I could have brighter news today to share. The best part of today has been how wonderful my husband has been....
Hopefully I will have better news tomorrow? regards Jenn0 -
Awe Jenn, hope tomorrow is a much better day for you. When you see the onc again mention to him about the quantity of meds given as against the amount of meds needed and request more. They are usually pretty good and will oblige. I think they hope that you don't have adverse effects from the chemo.
Yay for good attentive hubbies!
Love n hugs. Chrissy
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Jenn, try eating something small every couple of hours and whenever you start to feel queasy, such as Jatz (I like them with avocado or another mild spread) or, as someone suggested, Saos. I kept ginger pieces and crackers by the bed so I could easily access them during the night. I am assuming you have the sick feeling but not active sickness.
I don't have children but is the nausea anything like morning sickness? If so, you may know remedies for that which might help.
If you need more Maxolon, maybe your onc could fax a script to the pharmacy.
I had to take the steroid tabs for three days after chemo, as well as the Emend for two days.0 -
Jenn I was given Onadestron to take home to take for 2 days as well as the Emend - worked a treat. You have to tell your onc everything that goes on so they can prepare you for next time. I was given dexamethasone to take the day before , the day of and the day after, Emend on the day and 2 to take home plus the onadestron. We had to call my onc on the first weekend as I had terrible leg pain and he phoned through a script to my pharmacy - that was caused by the taxotere. Sorry you feel so nauseous. BTW - white chocolate went down a treat for some reason.
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Racy - I went to the Powerhouse markets this morning - do you ever go? I was really early for once and was home again by 7. Just went to get fish and fudge - yumm.
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OK, can someone please tell me what Emend and Moloxan are used for? and any other medications I will have to learn?
Jenn - I'm jumping into your chair straight after you - thanks for keeping it warm
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Emend is an expensive anti nauea drug. I think moxolon is an anti nausea drug too but I haven't heard of anyone else having it.
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Jenn - sorry to hear you aren't feeling well. I was given lots more meds to take home than you. Like Sue I was given Ondansetron and dexamethasone to take home, but enough to last for a week. I was only given ampules of maxalon that I would have needed to take to a dr or nurse to have injected if the others didn't work. You will need to make sure you ask for more meds next time, it doesn't sound like you were given enough.
I was also given a letter to take to the ER if I had to go (I didn't thank goodness) that said I was a chemo patient and was to be given priority treatment, so that I didn't have to spend too much time in the waiting room with all the germs.
I used to rinse my mouth with a mixture of salt and bi-carb in warm water - worked really well - would do that 5 or 6 times a day.
I had a similar experience with my port. I'd had it in longer than you though (not a lot) and I'd gone to work and decided I needed a file from the compactus - and it was on the top shelf, instead of using the step I reached up to get it - and same feelings you had. Had to go the hospital and have it checked too. Was banned from the compactus after that lol
Also - make sure you keep your water intake up, it will help. Give your lovely hubby a hug from all of us for helping you through this - it's great to have a good man to help.xoxo
Kate - you have pre-chemo brain lol. Don't forget to ask about the port on Monday.
Ememd is wonderful - but it's $100 per tablet!!! Not that I had to pay that. You'll need to make sure you get enough meds to see you through too - and it seems that ondansetron and dexamethasone are the common ones. They worked pretty well for me. You might need to get a tablet for heartburn - I remember I got that on FEC and it stayed with me through the Taxotere too. I still get it occassionally now - but not often.
Trish
xoxo
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Nah - I'm just blonde! not for much longer though
.Not looking forward to it, but all of you before me INSPIRE me - You really do.
xxx
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