I was diagnosed with Cancer in March and although we knew it was Cancer its still a shock to be told it. I have had 2 chemo cycles now and have my 3rd at the end of the month. I would love to chat about the chemo side affects to anyone..
Thank you for your kind words re our aniversary, Mary was really pleased with her flowers although we did not go out as she was still not feeling great, and not much appetite. Although she is feeling a little better yesterday and today, she is still not as good as she has been in past weeks.
Thank you both for taking the time to look up Maffucci's, Mary has spent most of her life explaining it to just about every consultant she has seen, because very few people have heard of it. Because of it's rarity, there is never going to be money pumped in to fuel research so it's just something she has had to live with. It may seem strange to you, but in contrast it is reasuring that there is so much support in regard to cancer because it is so common and there is a lot of research going on.
Re our Orlando holiday, I have been trying to call at least one travel insurer a day to try and get a quote, but so far only one has indicated that they may insure her provided she stops chemo 2 weeks before the trip, and they receive a satisfactory report from her onc. About 6 have declined cover for her at all because they consider her too high risk. I need to speak to her onc at clinic next week as to whether 5 cycles of chemo may be enough, I do not want her treatment cut short if is detremental to her progress. Also, if the week she's had following the day out in Wembley is an indicator of how she may feel on holiday, then it would not be much of a holiday if she is stuck in the Villa for most of the holiday. So a few things to consider. It is a stark reminder of how serious Mary's condition is when so many insurers refuse to cover her, that's quite hard for me to come to terms with but it's something I have to do.
Funny how you all hate ginger! I have persuaded Mary to go back on the liquid iron formula, it's worth a try to see if it makes a difference. It was her onc that suggested trying it when she was originally diagnosed, he said that some of his patients swear by it. Last time around she responded really well to the carbo/taxol in respect of feeling good after chemo but of course I cannot know for sure if the liquid iron helped, but certainly worth another try.
I have also added "clinical trials" to my notes to ask the onc about next week, I can just ask if he thinks it would be appropriate and what are the risks?
I do hope you and the other ladies are feeling ok, I have been looking out for your posts, I haven't had time to post myself until now.but I try to read everyone's messages.
Hope you're having a nice Easter weekend, and Mary still feeling a little better. I had a bit of a setback last night, sickness and diarrhoea during the night, but OK now, so hoping it's a one-off. (Actually, I think I ate too many sweeties before I went to sleep, so serves me right, I suppose!)
While I was looking for Maffucci's Syndrome the other day, I chanced upon another page where the family of a sufferer is trying to set up a website solely for that, and asking for other sufferers/families to contact them. However, the page was dated Oct.2011, so don't know if still viable. Anyway, the address is www.maffuccisyndrome.org, don't know if you want to give it a bash, there is a contact facility.
Good news Judygirl as last you have a plan, I think Eileen is on carbo/gem, don't think its much different from the patients view point (apart from hair loss, lucky you, very jelous!).
I know its Easter but perhaps you started to soon on the sweeties Haze! hope its all settled now!
John, its really difficult trying to plan stuff especially with regards to going away. Perhaps you need to discuss it with the consultant? I know if in-patients or there relatives have been unable to go on planned holidays the consultant has written a letter allowing them to get the cost back. This might allow you to replan it at a later date.
I went to the GP yesterday as my abdo pain was getting worse, he examined me and found an incisional hernia (bowel coming through a small hole where they stitched me up following operation), he manipulated it back in and hey presto pain gone! Only problem is every time I get up it comes back (not painfully unless left!) so now busy popping it back in lol, gonna speak to surgeon friend and see if they will consider repairing it, personally can't see its any more invasive than the porta cath but they may have other ideas!!!! Had chemo today but they couldn't use porta cath as its was too swollen to feel the 'bung' lol they did manage to find a vein which was something! oh the joys of being awkward
I'm really pleased that you've solved the abdo pain problem - can you not wear some sort of hernia belt to keep pressure applied while you're waiting to see whether surgery is an option, or is that not suitable in this case?
I'm feeling better now, thanks, serves me right for being greedy, but was scared to go out today in case I had to rush to the loo! I'm keeping the hot cross buns for tomorrow!
There's always something with this chemo, isn't there - you think you've got it all sussed and then what was supposed to help doesn't, like your portacath. Still, you managed to get it done, that's the main thing - hope it's OK for next time.
Thank you for your wishes and I am so pleased that you got your treatment sorted at last. Mary is on Gem/Carbo too and will be half way through on the 19th, just before you start. Good luck, I hope you respond well.
Hi Hazel,
Yes, Mary feeling much better now, thank goodness it was her week off of chemo, enjoying the weekend so far. The website that you saw was actually put up by my eldest son (who has his own web design business) back in 2010. That was before Mary got her initial cancer diagnosis so our priorities have somewhat changed since then. The contact page goes directly to me and I have explained Mary's situation to anyone that has made contact, only about eight in two years! Hope you're still feeling ok, go easy on the sweeties!
Hi Jackie,
Glad to hear you have found some relief from your abdo pain, hopefully something can be easily done to remedy it properly. Yes, I have quite a lot to discuss with Mary's onc next week so it should be an interesting consultation.
Not sure if it's the liquid iron making Mary feel much better or whether she would have done anyway, the real test will be just after the next two chemos.
Hope everyone else is doing ok and enjoying their easter weekend.
I managed to get my 4th chemo but felt awful yesterday, not too bad today and have been able to lie on settee, something I can't do when I feel rough. I was on Gem/ Carbo and found it a drag as it's 2 bags one week, then one bag, then free week so I felt I was never away. With this Rotterdam which is Cistplatine /Etoposide even though it is every week for 3 cycles then a 2 week break and another 3 cycles it seems to be going quickly.
On another note Jackie & Hazel I have found out what was causing the spasm thing I was getting. Apparently with Taxol which I was on 2 years ago and had a few spells of the spasm, and Cistplaten also can cause nerve damage so if it continues I have to have an MRI scan and a lumber punch... So fingers crossed that I don't need one of them. I think as well because I had the 5 cycles of Gem/ Carbo it is very soon to be blasted with yet more chemicles. I have been on chemo now since Oct with only a few weeks break..
I hope everyone else is doing ok . I have not read all posts yet so need to do catch up..
Well, it's a small world, isn't it - that website being yours?! What a shame it hasn't elicited more interest, even though your priorities have changed now, understandably.
I am still OK thanks, hope Mary is too, and that you all enjoy Easter.
How are you today? Even better than yesterday, I hope? Glad they've told you why you've been having the spasms - they keep some of these extreme side effects very quiet, only tell us if and when necessary. Not sure whether that's a good or bad thing!
Anyway, I hope you don't need either test - I've never had a lumbar puncture, but I HATED the MRI, horrible, noisy, rattly, uncomfortable b..... thing. Like some mediaeval torture machine! That's something that definitely needs some technical work doing on it! (That's my moan for the day over.)
