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chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year

(742 Posts)
MrsShrek3 Sun 30-Dec-12 19:51:20

sign in, folks smile
Hoping that 2013 brings better stuff for all of us.

MrsShrek3 Sat 06-Apr-13 01:32:29

any idea what your dhs chemo is, inamin? in case any of us have any pointers? there are loads of different "regimes" ( isn't that the word?) but fingers crossed someone might know something. Dhs main side effects were allergic reactions to the rituximab (antibody) during the chemo session, quite common apparently, and also numbness in his hands and feet, all now disappearing. obv hair loss and so on, but the meds he was given for other well known side effects did their job and he didn't have much sickness during the treatment. Try not to worry - easier said than done, but you will get through it. as strange as it sounds, when the treatment starts it will start to feel like something is being done and although all very scary, you're getting somwhere iyswim.

Inaminutenow Sat 06-Apr-13 07:15:51

He'll be on ECX, three-week cycles. Anyone on here who knows about this?

MrsShrek3 Sat 06-Apr-13 09:57:39

inamin I have just looked at this - dh was on this chemo drug too. makes em do red pee for a few hours grin
It's widely used by the look of it, it's in its own little lightproof cover as it can't be put in the light (dh said it must be a gremlin)

gingeroots Sat 06-Apr-13 11:52:43

inaminute you could ask over on the Tamoxifen thread

There is a lot of knowledge from people with various types of cancer .
There is bound to be someone who has had ECX .

Though frankly ,reading the links ( well I could only face one ! ) posted by MrsShrek I'm not sure I would want any additional info .

No offence Mrs Shrek smile ,it was kind of you to give the links .
And of course people all react differently ,and I'm sure the listed possible side effects of any drug ,paracetamol say ,are scary to read .

cornygrigio Sat 06-Apr-13 16:21:44

I have no idea what type of chemo dh was on blush <bad wife!>

MrsShrek3 Sat 06-Apr-13 19:04:35

sorry for scaring ginger blush
dh was on R-Chop (which sounds like a karate move or medieval death sentence )

Inaminutenow Sat 06-Apr-13 21:51:36

Thanks MrsShrek, DH was actually given the MacMillan info as a printout about the ECX, I was wondering about people's experiences on it. Might try the Tamoxifen thread.

daisydotandgertie Sun 07-Apr-13 08:45:39

Mr D was on ECX - at least for one treatment, then he was changed to OCX.

I can do question answering if you like!

daisydotandgertie Sun 07-Apr-13 08:47:02

The E part is the Epirubicin which Mr Shrek was on too (I didn't know that until today!)

cornygrigio Sun 07-Apr-13 17:49:10

have asked dh about his chemo...he was on oxylaplatin and 5fu

gingeroots Sun 07-Apr-13 17:52:35

daisy did they change MrD ,s regime because he didn't tolerate the ECX ?

Corny how did your DH find the chemo ?

cornygrigio Sun 07-Apr-13 17:59:18

ginger - he was very tired but he coped really well with it
had the tingly/numb hands that Mrs Shrek describes and some nausea
He was always very cold and he wished he could have done it over the Summer rather than the Winter
he also had an infection due to low immunity
he is just very relieved to have completed it now though!

gingeroots Sun 07-Apr-13 19:38:40

Thanks corny ,good to know he coped well .
What is next step for him ?

Have PM'd you by the way as didn't want to hog the thread !

lisad123everybodydancenow Sun 07-Apr-13 23:45:38

Message withdrawn at poster's request.

TorianaTollywobbles Mon 08-Apr-13 18:19:28

Hi just found this thread. Dh went for an endoscopy yesterday, and they found a lump in his bowel. We have been told it could be cancer, and he is going for MRI and CT scans tomorrow, and full colonoscopy in the next few days.

I am just so scared of the outcome, I know we don't know for sure yet but it just seems they were trying to prepare us for worst. Will know for sure in next couple of weeks, once all results back in.

I just can't get my head around it, I keep telling myself it won't be but what if it is what if it has spread, what about treatment. He is too young, only 40.

Arrghh just don't know what to think. I hate the waiting but at the same time I don't want to know.

gingeroots Mon 08-Apr-13 19:13:17

Huge sympathies TT .

Waiting is the absolute pits .

I'm not sure this qualifies as advice but I would recommend grilling everyone on when and how you get the results of any test .

Though IME they're deliberately vague ,so you may need to do a lot of "well ,what usually happens /what's the normal timescale " .

It might be nothing sinister ,and if it's not good news ,you have to hold on to thought that it's good they've found it .

And if you google and look at prognosis ,bear in mind that they're all averages and out of date . They reflect statistics from some years ago ,not current outcomes .

Thinking of you x

MrsShrek3 Mon 08-Apr-13 19:52:00

hugs TT. Most of us here and DHs are in thirties and forties. It bizarrely makes the prognosis better in many cases, because younger and fitter means chemo and other treatment works. Not bloody fair tho. hang in here and there's lots of support smile

TorianaTollywobbles Mon 08-Apr-13 20:44:13

Thanks both of you. Gingeroots I'm glad you said that about prognosis being out of date. Of course I have terrified myself by googling (i know you shouldn't) and some say 5-10 years only.

I will certainly hang in here, may need the support and hand holding. Will be back with results.

Thanks again

gingeroots Mon 08-Apr-13 21:11:35

And what you have to remember is that each case is different ,I'm no mathematician but stats are based on averages and I think those averages include all age groups .

I found we couldn't talk to other people while waiting for results ,but you can here so come back .

daisydotandgertie Tue 09-Apr-13 07:29:42

My wonderful, wonderful so very much loved Mr D passed away yesterday evening.

I held him in my arms and told him how much he was loved as he went. It happened so very fast.

I could not have hoped to find a more wonderful man and I cannot imagine how to go on without him. My heart is utterly broken.

frostyfingers Tue 09-Apr-13 09:04:24

I'm a lurker and am so very sorry to read your sad news. You and your family will be in our prayers at this awful time for you all.

gingeroots Tue 09-Apr-13 09:20:22

Daisy so very very sorry .

My heart goes out to you .

I see from earlier posts that you are quite physically isolated and feel very alone . Do you have children ?

Thank heavens you were with him .

You must be in shock .

Thinking of you . xx

lisad123everybodydancenow Tue 09-Apr-13 09:21:23

Message withdrawn at poster's request.

MrsShrek3 Tue 09-Apr-13 09:29:21

Lisa said it perfectly. hugs Daisy sad

EmmaGellerGreen Tue 09-Apr-13 09:30:23

So sorry to heat that terrible news.

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