Confused steroids/anti-inflammatories

[Lyn]

Hi all, I confused, I am taking dex to supposedly help swelling with tumuors, so it would be considered an anti-inflammatory, now the anti-inflammatories, Brufen I know thins the blood, so the fact that the blood is thinner is that a good thing or a bad thing when it comes to feeding the big C? At the moment I am only on 1x4 dex which as far as I am concerned is 1 too many, but at the same time my GP says the steroids are to make me feel a bit better as well, problem is taking the morphine as well sends mixed signals to my body, so I don't have much energy for long anyway, at it seems the only time I am functioning is when the Morphine is kicking in, and it is only 20mg x 2 daily, but when I stopped the Brufen in hospital when I was supposed looking at surgery, on the Friday I had about 2 tumours with that MRI, but by Tuesday I had another 3, so is it the Brufen being stopped increased the growth or just a coincidence, if it stops the growth I will eat them like lollies if I have to. The problem is I have so much going on with all the other Rare diseases I have had bestow on my that the numbness and atrophy in my face is from all of that and not from RADIATION!!! I have to keep telling them, actually screaming at them "listen to me finish, it is not from the RADIATION, it was there before RADIATION" then they get upset because I have to scream at them because they keep insisting on talking over the top of me and blaming the radiation" how on earth does the poor placid C victim survive out there with such arrogant doctors and oncologists, I know they don't without our help, and yep, as the song goes "I'm Still Standing" and I'm in no hurry to lay down and cop it on the chin, there are still too many unanswered issues, and most probably a few more rare diseased I haven't presented with symptoms for yet, so if anyone can enlighten me on the thin blood thing I would appreciate. I know when I had Taxol to the neck area I heated up with a hot watter bottle so the chemo would go straight there through the enlarged veins from the heat, I know that worked because I do have numbness there, peripheral neuoropathy, along with the trigiminal neuralgia, did I mention the nerve doc said I didn't have it, I argued with her, she said there is no pain I said of course, nerve blocker Neurontin, then she looked at my face and said you have Horner's Syndrome, no kidding I said caused by you guess it TRIGIMINAL NEURALIGA, I just said thank you, I diagnosed myself. Plus with my mixed connective tissue disorder one of which being Sclerderma, which causes, yep facial atrophy, and not RADIATION!!! So us HER2 are a unknown quantity and unpredictable, so my brain is functioning, not at 100% because I have to admit, until radiation starts I am like an expectant mother, but the good and bad thing is my bladder works well, but it is such a pain getting up and going, as soon as I drink it doesn't take long to go through me. Well talk to you all soon, I am still doing research, and to top it off the Auto transmission in my has just decided to pack it in just as I have a lot of miles to travel to radiation, and in between Easter and our Anzac day holiday it is hard to get anything done, but my darling god son, 30 has it under control for me, he and Ron are doing it on Wednesday and fingers crossed nothing goes wrong, because I don't want to do the distance in our other car, for one the air doesn't work and it is very long to get into, and when Ron drives it is a manual I get car sick, his mid life crises car, me I am a comfort reliabilty person.

Love & Hugs Lyn

[Cathya]

Lyn;

I don't know about the thin blood....sorry. I just wanted to thank you for posting.....we are anxious to hear news about you and saying our prayers for you. I hope you can take the air conditioned car and avoid any potential for car sickness....good grief!

Cathy

[Lolly]

Lyn, so good to have an update from you~

About the anti-inflammatories; Brufen contains ibuprofen, which is a Cox 2 inhibitor, and there's some research (and clinical trials on-going) to investigate the potential of Cox 2 inhibitors to prevent cancer. So I wouldn't worry too much about it helping the cancer grow, it may actually be helping to slow it down

Keep you chin up girl, we're all rooting for you.

<3 Lolly

[Lani]

As if your medical problems themselves weren't enough!

Ibuprofen (and naprosyn and clinoril and a host of others) are NSAIDS (nonsteroidal antiinflammatories) they make your body make less prostaglandins (chemicals which are involved in inflammation) by decreasing the enzymes needed for their synthesis (cox enzymes). One of these cox2 is involved in many her2 positive breast cancers, so NSAIDS may help prevent it (and perhaps treat it, but the relevant studies are not performed, conclusive yet--I found one on herceptin and an NSAID in metastatic breast cancer where it didn't perform as well as expected)

Those that are both cox1 and cox2 inhibitors (ibuprofen, naprosyn, aspirin, indocin, etc) also thin your blood, those that are cox2 speciific (eg celebrex)
generally do not (or much less) as it is the cox1 which prevents the blood cells called platelets responsible for stopping bleeding from joining together.

Steroids are, by definition, NOT non-steroidal antiinflammatories. They are STEROIDAL antiinflammatories as they work in a different way to fight inflammation. They do not thin the blood, but they make your white blood cells not work quite as well, which is not a good thing IF you had an infection--I take it you do not.

In some studies (head and neck cancer for one) taking cox2 inhibitors
radiosensitizes the tumor so that a given amount of radiation is more effective--you get more bang for the buck. But they must be discontinued 5-14 days before surgery if they decrease both cox1 and 2 to avoid excess bleeding

I wish we could find you a thoughtful radiation therapist or surgeon to discuss all this with you. Oncologists generally only want to discuss their potions and are less well versed at the particulars of surgery and radiation.

Steroids can cause a false sense of well-being (and a sort of let-down when you stop them) so be aware of how they and the morphine are altering your mood and perhaps not letting you fully be your spirited self!

Be sure to keep asking questions of your doctors --

In case they continue to keep dropping the ball we will keep trying to answer your questions as best we can and you can be sure that lots of prayers are going your way!

[R.B.]

Lani keep up your exellent contributions.

Your knowledge research is admirable.

You put things in a clear to the point and understandable way, and have a habit of sorting out the key factors.

And most amazing is your constant dedication to helping others.

Have some gold stars. There must be some yellow ones up there in the firmament. Pick one for you. Much better than a notice board.

RB


RB

[Barbara H.]

Hi Lyn,
I'm sorry that I do not have anything to offer you, but you absolutely amaze me. You were in my thoughts the entire time I was away. It's good to read your posts and see what a fighter you are. Keep paving the way!
Best regards,
Barbara H.

[Lyn]

Thank you so much Lani for putting it in a language us others sit screwing our face out, the technical answers seem to be a bit back handed, just when you think you understand they throw in something else, I can't have the Celebrex thanks to the medical profession giving me heart failure, but I find that the Celebrex did nothing for me in the pain department but did help my fractured should I say destroyed shoulder humeral head, I have taken Brufen for years now I just need to work out how much I need or what my body tells me. And to you and all of my family on the site thank your for the prayers,love, support and the desperately need info, I don't mind admitting that I am truly scared this time of the unknown, as well as all of the drugs mucking with my seretonin, I prefer my humours side, but the family is coping it as well, so if you remember, Lorel and Hardy, I'm Stanley at the moment, and I actually have those dolls in my collection so I am going to put them in a nice sunny spot in the room where I know they will be happy, I know, I'm warped, but how else do we get through this, because I think we all believe is this really happening to us? Well thanks again guys so as long as I can type and see the screen of course "I will be there, counting on you" words of another song coming on I think., someone elses of course

Love Hugs Lyn

[R.B.]

You really should approach a local newspaper to do a column.

There is nothing warped about you.

There is a long tradition of people finding humour in very difficult situation. And its usually the "jockers" who lift everybody elses spirits.

Keep posting. Try a newspaper if you have the time and energy.

RB

[lindaw]

He Lyn
Sorry to hear you are not well but hopefully sorting things out. I have not been online for a week as I have been in hospital with a port infection - nauseaous and high temp. Had an op Easter Saturday ( admitted Good Friday) to remove the port after locating the infection.
Will now try a little radiatio ( 3 weeks) to save chemos as am running out.
You had radiation I remember and i think it was painful. Not sure if it will work /get worse or do nothing - but have to give it a go.
Hope you feel better
love
linda

[sarah]

only take ibruprofen with food to avoid stomach problems.
sarah

[Lyn]

Hi Linda, and thakns everyone, I confess, it was my own doing, that my radiation was painful last times was because I was having a double dose of Xeloda with it, what was prescribed wasn't enough but double, OHHHHHH1! too much, it hurt. I have had in excess of about 100 or more hits of radiation, and only a couple including the last were a bit sore, but I got straight into the soothing burn cream Silvazene which they use in the burns unit of the hospitals. But as a cure for lymph glands it was very effective, it was very effective, it is just I always seem to get the rare stuff, but yesterday and today I have been up and down and I am convinced it is the drugs combining, I have always taken a stomach tablet since the first round of chemo burnt my stomach and oesophageus, and still occassionaly need to have an antacid tablet, but I"m still here and seeing rads onc tomorrow and having planning done, isn't it weird what we look forward to, at the moment my life revloves around taking tablets, walking with a stick and trying not to wobble over and the big effort it is to have a wee wee, it seems I just get into a nice sleep, then no you don't time for another wee, at least it works which is a good thing, I will keep you all informed. I am having trouble getting tablets down my throat, only the big ones and even in half it is hard they just want to sit half way and don't want to budge, they would make a good sight in the blender.

Love & Hugs Lyn