Gem/cap

[Jwilson]

Have I got the name of this chemo correct? Bill now on his third week of it. One IV drip on Wednesdays and 7 tablets each day. Three weeks on and one off basis. Does anyone know anything about it? It seems to agree with Bill ok so far, apart from extreme tiredness. He isn't sick or anything but we have been told it kind of builds up as time goes on. This week though he took a clot in his leg so has to give himself an injection every day for six weeks. I have a feeling the chemo is starting to help. He is eating a bit more and eating a greater variety of foods. Things with more taste etc instead of living on digestive biscuits and yoghurt. So......bloods done this morning, they give us a time for the drip going up so we come home in between as its so hard for him to sit comfortably in a waiting room as he's so skinny. Just wondered if anyone could report on the success or otherwise of this chemo! TA

June W

[Cathy]

Hi June

Yes you have. No experience myself but think this is what Bee's partner (Chris) is having so Bee will most probably post on here.

Re the blood clot - you might have read about that on Julia's recent post. My partner Jonathan and Julia's both now have to have injections (clexane) for blood clots as does Steve. This is a side effect of the cancer I've been told.

V V good news about Bill feeling better and his appetite coming back!! It does sound like the chemo is taking effect

Super news and long may it continue. A glass of wine is in order eh?

Cathy xx

[Slewis7313]

Hi June, I had GemCap for 4 months earlier this year, taken in the same way. I had no real problems other than extreme tiredness in the day of the IV and Was only sick 2 or 3 times in the early days. I also found that my appetite improved before the end of the first month and have continued to regain weight ever since. I too had a clot and was put on daily Clexane jabs in March which I am still taking. I am seeing the Oncologist tomorrow and hope to come off Clexane and perhaps go onto oral Warfarin (not sure about the spelling) soon. I am further forward in the treatment, have had 6 weeks of Radiotherapy and will have the results of last week's CT scan tomorrow.

I hope the chemo helps as well for Bill.

Take care

Steve

[KATB]

Hi June, has Bill had FOLFIRINOX before the gemcap?

K

x

[J_T]

Hi June, sorry to hear about the clot, Ray got one too, his leg is huge! I'm going to be taught to do the injection - can't wait! lol. Cor if you didn't laugh, you'd cry!

Pleased to hear Bill is doing a lot better, long may it continue!

Jx

[Bee]

Hi June,

My husband had gem cap , four cycles in all, generally well tolerated. Always needed to sleep immediately after the gemcitabine. Some sore hands especially after the last cycle. But like Steve, weight stabilised and chemo had a good result, leading to chemoradiotherapy .

Steve, good luck for tomorrow, will look out for your post!

Fingers crossed all will go well for you both.

Bee x

[Jwilson]

Thanks everybody! I read all of those replies out to Bill and he was definitely reassured by what everyone was saying. The support is great here isn't it? I mean at the hospital there are lots of people in the same position but they sit for hours and hours not speaking to each other. I guess some folk are more private than I would be inclined to be. Really thank you all, he now knows the clot is not a rare event nor is this exhaustion.

June.......oh in Tesco Villa Maria was on an offer x

[PCUK Nurse Dianne]

Hi JUne and Bill,

Great that you are finding the forum helpful, always great to share with other people who have been through or going through the same as you. Unfortunately as you say developing a clot (or DVT) in the legs especially is not uncommon in cancer patients. So you are aware, Warfarin (the tablet form of anticoagulation) is contra-indicated when on chemotherapy, thus the injections need to be given to thin the blood and prevent risk of any further clots. Usually treatment is between 3-6 months for proper prevention.

As for the Gemcitabine/Capecitabine. Gem has been around for a lengthy period of time and is seen as the mainstay of chemotherapy treatment. Capecitabine is not often tolerated so well in some patients, so they may have to stop that, and just continue on the Gemcitabine alone. There are other treatment regimes that may suit different patients for different reasons, and these are usually viewed on an individual patient. As you have heard from some of the 'forum family' extreme tiredness does occur, in some patients immediately after the chemotherapy, or some find it may be 1-2 days afterwards. Once you find your routine, it is helpful to try to plan around this, ie try to get out and about on the days when Bill is not so tired, so that he is able to rest up when he is feeling exhausted. Hopefully he will be able to put some weight on soon.

Of interest is Bill having some steroids (Dexamethasone) with his chemotherapy, this does help in improving appetite and also gives a 'feeling of well being' as well.

Dianne

Support Team

[Jwilson]

Thanks Dianne, yes Bill takes steroids as well. As for out and about, I would love if he was able to go out at all but he is just too poorly all the time. The only time he leaves home is to go to hospital and even car journeys to the hospital are not comfortable. I keep hoping that his energy will pick up. Normal pre cancer Bill could walk 20 miles up a mountain in one day carrying a rucksack and do that all over again the next day! Didn't fizz on him. He is totally knackered all the time but hey if that is his worst side effect we can deal with that......he is not being sick or having diarrhoea so tiredness is ok as far as I can see. Must send you a wedding link he he

June

[J_T]

Bill sounds similar to Ray, June, especially now they are twin leg dvt-ers! Ray is tired most of the time too and has never really regained is pre diagnosis verve!

We do get out when we can, though that hasn't been for a few weeks, except to hospital of course :rolls eyes:

Hope he tolerates the chemo okay!

Jx

[Jwilson]

Hi J

Yeah Bill just has no energy whatsoever. Asleep all the time. Tonight though we had a bit of a pain episode. He went to bed in the afternoon and woke up in the early evening in total agony. I was so worried. It took several hours but eventually he became more comfortable and now sound asleep on a sofa. 12 30 at night. This illness is so awful isn't it but sure what illness is pleasant or fun? I am hoping to go to a wedding tomorrow depending on how yer man is feeling. My daughter and another friend have said they will come over to be in the house so all being well.....few drinks and a laugh. Sometimes you need to go out but the guilt gets to you don't you find?

June

[PCUK Nurse Dianne]

Hi June and other lovely ladies,

I did hesitate to reply to June's post, however felt it needed a 'hug' to you all really. I can sympathise with what June says about feeling 'guilty' for doing something for yourself when you are being a carer, but that is just such an important thing to do.

For those of you in a 'carer's/partner role' at present it is really important to do something for yourself, on a regular basis, this is what will keep your relationships healthy, and also important for you. Of course you cannot deny anyone with this disease the reality of all they are going through, however it is yourselves that also deserve some recognition for all you do, the angst and worry, the caring, running everyday life, doing hospital visits and other appointments, and also sharing the pain and emotion that the person you love is going through.

Please do not feel guilty for 'being kind to yourselves', this is so important and a much needed part of your life. Your partners will not deny you this, and they may also be feeling guilty that you are not out there doing the joyous things that you like to do.

So by proxy, we are giving you the approval to do these things, all part of the 'caring role' and looking after yourselves as well. This will enable you to be the loving partners that you are and continue doing this in a better capacity.

So, permission given to be able to take some time out and don't feel remorseful.

Dianne

Support Team

[Cathy]

That's a lovely post Dianne.

Thank you

xx

[Jwilson]

Dianne. I didn't get to the wedding! We ended up at the hospital. Low blood pressure due to dehydration which made him all fuzzy in the head. That plus very severe pain last night and this morning meant that we were six hours waiting for a bed and I am now back home. Bill hopefully will just need to be picked up around lunch time tomorrow. X-ray done and nothing odd showing up such as infection or anything so that's good. Ho hum.....I will keep the outfit for the next wedding!

[J_T]

June, sorry you didn't get to the wedding

Equally sorry to hear that Bill ended up in hospital too

I'm sending you a virtual hug, I bet you're exhausted.

Julia x

[Jwilson]

Hi Julia. Bill got out on Sunday. The fluids did the trick quite quickly. We went out today!!!! Yay.....to marks and Spencer. Looking for things to redecorate a bedroom and to have a little bit of lunch. Well I thought he was going to have to climb into one of the beds. This was his Wednesday off chemo so it was nice not to be in a hospital. He still does not drink anything like enough fluid, I would have thought that after last weekend he would have been determined for that not to happen again but I see no evidence of it. I measure out water and put it in the fridge but he says' I don't like water' screaaaaaaaam! Just put it to your head and bloody down it, it's WATER. However nurse head back on but I am flipping fed up

[J_T]

I COMPLETELY understand where you are coming from re the fluids! Oh yes!

Ray has been on a hospital drip a couple of times and HATES being in hospital but its still a struggle to get the fluid down him. He does try and I do nag but is hard some days.

I measure and total up all the liquid he has, including tea, coffee, fruit juices and milk on cereal. It doesn't have to be just water, maybe that will help Bill get more down him.

Good luck Nurse June

Julia x

[Cathy]

Hi June

Sorry to hear about Bill being in hospital.

Have you tried fruit squash with water? I'm not a fan of water on it's own but can drink loads of squash.

Xx