On the move again.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Alas, my skin mets are not responding to hormone treatment, so I am moving into chemo again. Capecitabine is the one chosen.

This was triggered as there has been a tumour development in the skin under one eye, and it is affecting the eye movement. Since the danger is that I will be stopped from driving - and I cannot at present afford to be in that situation, aggressive action must be taken to reduce these growths.

For those that are interested, I am [with my oncologist's agreement] also trying this special honey from Israel which is supposed to mitigate the side effects and improve the efficacy of the treatment. I will let you know what happens.

ksplat · Posted: Fri Jun 27, 2008 4:53 am Post subject: On the move again

Hi Vee

Sorry to hear you are back on the chemo road again! I hope this resolves the skin mets under your eye?

I will be interested to hear about the Israeli honey treatment too!

Thinking of you,
Cheer, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Hi, Angie - first round over - and my feet and mouth are killing me! Sad

However, fortunately this chemo is adjustable so it may be reduced slightly on the next one.

I am taking the honey - the jury is out at present. I think I need to give it three months to be sure if it helps or not Confused

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Update:
My blood counts have remained almost normal, and the nurses tell me they think that is the effect of the honey, so I am continuing it.

However, I have the dreaded hands and feet syndrome, with cracking skin on the fingers and toes, on the edge of the nails. AGONY!!!

Anhyone who has had the same problem - how did you cope??

ksplat · Posted: Sat Aug 23, 2008 12:06 am Post subject: Re: Chemo side effects

Hello Vee
Thanks for the update, I've been meaning to check on you for some time now. Sorry 'bout that.
The skin problems sound dreadful & soooo painful for you. I'm sorry you are having to endure this discomfort & pain. As I'm not familiar with the side effects of this chemo I cannot suggest anything? Terribly sorry.
It's a real bonus to have your bloods so good & an added bonus to have recognition for the "honey", from the nurses.
I hope someone will come to your aid soon, with some simple, staightforward advice.
Thinking of you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Update - Today we decided to stop the capecitabine. The toxicity outweighs the benefits. Sad, but frankly life has been pretty intolerable, with sore, cracking hands and sore, cracked feet making movement difficult. The last blood counts were against me, so the decision had to be taken. Onwards and upwards! Probably back to trying hormonals for a while. Fortunately it is a very slow cancer, so my onc. is hopeful.

I have been taking the Lifemel honey, but clearly it has not really been of major help so I will probably stop that as well. Disappointing, but one alwys hopes for the best.

I do wonder if there could be DNA tests developed to indicate how individuals might respond to chemos.

ksplat · Posted: Mon Nov 10, 2008 6:41 pm Post subject: Re: On the move again

Dear Vee
Sorry I haven't replied earlier Vee. Have been thinking of you & always follow your posts (even your replies to others) you are inspirational to me that through your pain & uncertainty you are such a "rock" to others on this forum.
In regard to the DNA tests for response to chemo are you talking about the "gene deletions" test? 1P & ? (whatever the rest of the test is called?). Have you had this checked? I know Brainman talks about this test often on here.
I do hope the hormonals will be kinder to your body & your skin affliction will clear up quickly once you stop the chemo.
Keep on keeping on Vee.
All the best, my prayers & thoughts are with you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Thanks, Angie.

I was meaning a test to establish what treatments will suit an individual with the minimum of dangerous or uncomfortable side effect. Maybe genetic testing is a better term.

An Oxford company has been working on this idea, but it still costs a horrendous amount to implement, and has not been properly tested.

A major breakthrough has been achieved to do with HIV, where the leukocytes have been altered to recognise all forms of the virus and to attack it in any form. It seems to me that this could also be a first step towards developing cells that will recognise cancer in any form and that will then attack them. Maybe not in my lifetime, but a real small glimpse of a possible future.

brainman · Posted: Wed Nov 12, 2008 3:28 am Post subject: Re: On the move again.

Vee, I am also sorry to not have replied sooner Sad

. I am so sorry that the capecitabine is doing more harm than good. How are you doing on the emotional level?

They are indeed looking for ways to check a person's DNA to taylor make a chemotherapy for that individual but I am not sure how close they are to finding those for all cancers.

Big hugs for you {{{{{Vee}}}}}}
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Hi, Jim - coping is the best way to put it. Constant pain is so wearing, and of course failure of a treatment is always a disappointment. However, my Onc. is not giving up and is looking at other ways of handling this.

It is an odd situation, to be categorised as terminal, but feel well, eat well, can think and act! Confused

Thanks for the hug - much needed.

Cindy · Senior User Joined: 01 Dec 2004 Posts: 171

[quote="Vee Smith"]Update - Today we decided to stop the capecitabine. The toxicity outweighs the benefits. Sad, but frankly life has been pretty intolerable, with sore, cracking hands and sore, cracked feet making movement difficult. The last blood counts were against me, so the decision had to be taken. Onwards and upwards! Probably back to trying hormonals for a while. Fortunately it is a very slow cancer, so my onc. is hopeful.

I have been taking the Lifemel honey, but clearly it has not really been of major help so I will probably stop that as well. Disappointing, but one alwys hopes for the best.

I do wonder if there could be DNA tests developed to indicate how individuals might respond to chemos.[/quote]

Sorry to hear you are having to endure all of this all over again, Vee. If you want to try natural things, as well as treatment, you may want to look into curcumin (Turmeric), which is suppose to help protect from skin and lung cancers. It has to be taken with bioperine (black pepper). Also, change your diet to include any unnecessary glucose from simple carbs. Also look into putting more omega 3 in your diet (fish, fish oils, etc).

They already have test that will tell how well a person will respond to chemo or if it will be of any benefit to them, or not. I can't remember the name of the test, however. My best to you.
_________________
Where is the cure???
www.truefacesofbreastcancer.org
www.diepbreastreconstruction.org
www.mybreastcancerstore.com
www.habierose.com

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Thanks for the suggestion. Turmeric has not worked for me.

Cindy · Senior User Joined: 01 Dec 2004 Posts: 171

I'm sorry to hear that, Vee. I don't want to get on your nerves, so I will just make one last suggestion. Have you tried IP6 with Inositol Hexaphosphate. I took it in powder form, as it is easier. I got mine from iherb.com. Also, Oxygen Elements Plus. Read up on them when you get some time.
_________________
Where is the cure???
www.truefacesofbreastcancer.org
www.diepbreastreconstruction.org
www.mybreastcancerstore.com
www.habierose.com

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 817 Location: UK

Thank you - but at present I am resting from everything. Sad

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