[TinaPParticipant]

After 4 days of 40mg Dex and feeling ok, next dose is days 12 ? 15. I have spent the last 2 days feeling like a ?wet blanket? and very tired and fed up.

When I start back on Dex, will my previous good spirits return? If I can look forward to that it will help.

I noticed that the pain in my back eased when on Dex, but has now returned.

Any encouragement would be appreciated.

Thanks

Tina

[tomParticipant]

Hi Tina

A warm welcome to Dex and am sure your good spirits will return 🙂 its worth the orf days to get into remission.

Dex is an evil little begger but worth its weight in gold if they could take out the side effects it would be Magic 🙂

Keep with it Tina and in no time you will forget you had to take it 🙂

Love
Tom "Onwards and upwards" xxx

[andygParticipant]

Hi Tina.
A warm welcome to the world of DEX. I've had my 4th round of DEX for my 2nd cycle of rev/dex therapy. It's 3:30am and I'm wide awake! I know I'll be sleepy all afternoon but as Tom says its worth tfe side effects for the good it does. I get chubby rosey cheeks too.

Take care
Andy xx

[TinaPParticipant]

Hi Tom and Andy,

I have heard from other people on here about Dex, but had not experienced the lows I have felt over the last few days.

At least if I know there is light at the end of the tunnell, at least for a few days it will be worth it.

Thanks for your encouragement

Love
Tina

[EvaParticipant]

Dear Tina,
You will be energised when you are back on the dex. However, as you go off it, it will take a while for your adrenal gland to start working and so you might experience a 'low.'
You are likely to feel hungry when on the dex and some people have trouble falling asleep. The dex does help with bone pain and it makes most treatments more likely to work. Possibly you will add weight around the abdomen and on your face.
Eva

[DaiCroParticipant]

Hi Tina,

Dex will certainly energise you, as well as doing its job of killing off the cancer cells, it does its fair share of the donkey work but you have to remember that the 'energy' supplied by the Dex is a forced energy and while it might boost your energy levels it will not boost your spirit.

Engendering a positive attitude is the only way to boost your spirit. Knowing the medicines and drugs are doing their job, bringing down your PP's, helping to clear the decks ready for your SCT will help… you can trust that they are doing their job and the further they go the better you will feel… I imagine it will take 2 to 3 cycles before you start to feel the full effects. But it is up to you to shape your future progress in terms of spirit and positivity.

Don't allow negativity to cross your threshold… and this includes the loving care of family and friends who coo and cluck and tell you what a brave person you are to be fighting your cancer… they will mean well but you have to either tell them to treat you as the person you were or avoid them.

Yes, by all means update them on your progress but don't allow them to pigeonhole you as a victim… treating you with kid gloves and seeing you only as a 'sick' person. You have to accept that there is a very good chance that your treatment will result in several periods of remission as the treatments knock the PP's down and out… with all these new drugs… Carfilzomib, Pomalidomide etc., coming into force during your journey you could well be looking at several years, or more, of relatively good health ahead of you… several years of righteous, good living and life-sharing and all the negative behaviours will do is remind you of the tough regimes of the treatments as they get to work… well if that is what it takes then embrace them, love them and concentrate on the good effects and healthy remission that they will provide.

This is a new form of life but it is a life worth fighting for and your personal bond with your treatments and your personal relationship with life will depend on your engendering a good, healthy, positivity driven way of thinking and living… don't rely on the drugs, treatments and medicines for that.

Take it easy but take it and determine yourself to do whatever it takes to achieve this.:-D

Starting today.8-) 🙂

Dai.

[HelenParticipant]

Hi Tina and Dai
He said it all:-) I totally agree, it seems daunting at the moment but don't let it get you down, avoid the people who only give you sad eyes, do something nice, for yourself or your nearest and dearest every day, make it worthwhile. I have found the people here quite uplifting when I've felt 'off it', which has helped me deal with others.
Love Helen

[mhnevillParticipant]

Hi Tina

I'm glad I'm not the only one who has had a couple of low days! I had my worst day yesterday. Day 18 or my second round of chemo. I had a hard job breathing and lots of back pain. I felt very low. Unusual for me. First time I'd asked myself what's it all for. Very sensible words from you Dai. Thank you. I guess this is the Dex reaction everyone talks about. At least I now have only Thalidomide till I go back to the Consultant next Thursday.

I have decided to have a very quiet couple of days. I haven't even got dressed today. I think I have been having too many visitors, but it is difficult if they just arrive. Hopefully. as it is the Bank Holiday, folk will be busy with their own families.

Isn't it difficult when you don't know exactly what to expect in side effects and what they mean. I didn't know whether to ring someone about the breathing problem, but then it got better as I sat quietly. My ankles are still very swollen. My Dr gave me some water tablets, but I haven't taken them today as I was awash yesterday!!! Also bunged up so that isn't helping.

Like Dai says, I just keep thinking this is towards a good cause a nice long remission so it is worth it. It's just I feel a bit our on a limb and I'm sure you feel the same.

Take care. Lots of love.

Mavis xxx

[HelenParticipant]

Hello Mavis
Hope you are a bit better today and not getting breathless again, if you are and your ankles are still swollen it might be an idea to to speak to the 24/7 haematology ward about this as it could get worse, the dexamethasone and other drugs have powerful properties and you might need careful watching in case of cumulative effect. Don't worry about bothering the ward, that is what we are given their numbers for, you need reassurance that everything is ok. 🙂
Also the down days after dex are very hard to endure, but they do pass and if the pps are dropping it's worth it. And the other problem:-( I do hope you have meds to make you go? There is nothing worse, it's so uncomfortable, so I'm wishing you luck in sorting this out over the weekend, hope you get some well earned rest and feel a bit more perky next week.
Love Helen
Xx

[mhnevillParticipant]

Hi Helen

Thank you for your helpful comments. Glad to say that I have felt better today and have made a more determined effort to do a bit more getting around. Well, if you can count walking round the room with my zimmer half a dozen times, doing more!!!

I know I have to focus on the good outcome I am looking for at the end of the CDT. At least when I go to hospital on Thursday it will be to start the third round so I am knocking them up! Hopefully the Consultant will have something helpful to say about my swollen ankles.

Hope things continue well with you.

Love Mavis xx

[HelenParticipant]

Hello Mavis
You sound much cheerier today. Which is good. Any walking around counts when it's tough going and you are tired after the drugs and the disease effects, so well done. You are right to be just counting off the treatment months, and as long as you can keep as fit as possible and the pps drop you are doing the right thing.
Love Helen

[mhnevillParticipant]

Hi Helen

Thanks for the encouragement.

Mavis x

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