Update on Violet

[Mobydick]

My wife on her 4th reoccurance, started Toptegan, prior her ca was 2450, she was suffering from enlarged lympth nodes in her neck makind eating drinking etc hard. After her 1st od 5 daily does tyhis had eased after the 5th she felt good, no real after effects. Just geting ready for the 2nd session, but her blood counts we low, so onto the neuprogin, but the good news HER CA has dropped to 950! All blood counts now okay, so in on Saturday. Jaco glad to hear youur wife having a good response, Sue, I have missed you emails, new address: steve.***@****

[MickeyVicki]

Steve,  good news.  I do hope the UK "specialist" reads these posts.

[LindaF]

Answer to your question: You don't.

L.

[Mobydick]

Tks, but if I had half the strength of the ladies effected by this, I would be happy, the ladies are the strong ones, us patrners just need to be there when needed, or just in the 'wings' when not. Steve

[SimplyStar]

I have developed a new respect for my son-in-law for the way he has become a strong partner for my daughter. Guess the old saying " when the going gets tough, the tough get tougher"  she is the glue that has held on to our family, now we have all become "super glue". # 6 coming up next week, cs was clean, CA125 down to 16, so all we do now is hope and pray that God heard our prayers. If I had one question, it would be "how does a mother stop crying for her children?"

[RavenLady]

Hey you two!  I was just thinking about you the other day!  So glad to hear Vi is rallying and responding to the course of treatment!  With a Guy like you by her side Stve, how can she miss!  MV

[Jatoo]

Dear Steve & Sue:

Thanks for the recap. Gives us a lot of hope. That's it, chronic is the word -just like "cherish" the word to decribe this disease (The Beatles Song).

Jatoo

[Mobydick]

Sorry re that, old provider would not set up at home so now have ADSL at home, I'm at home as I had to undergo opperation as a large lump was found at the back of my neck, had it whipped out asap, all ok as say it just a lypoma, look forward to catching up with you all again. My thoughts and prayers with you all. Steve

[Mobydick]

Hi just a quick recap: Vi was diagnosed Aug 2001 stage 2, had 6 sessions taxol/carb, was 'cleared' on our wedding anniversary 26th March 2002. Had a 2 1/2 remission, ca showed rising in Aug 2003, could not find reason on normal CAT so flew to UK to Cambridge university as they has a PET trial on, found that Vi had 26 hot spots throughout body, UK specialist (BUPA) gave her 6months! Came home to Jordan where her OnC made an official complaint to UK. Went straight onto Taxol/carb, 9 sessions, PET in Nov 2004 showed no signs of Cancer. had 6 month remission, only to CA start rising in April 2005 up to 450. Started Taxotare, worked for 3 sessions, CA down to 45, but rose to 700 in 2 weeks between sessions, started Gemzar, CA started dropping to eventually 34, had full workout as OnC said MRI of brain showed spot, so had gamma knife plus full head radiation. As CA was low, but gradually rising Vi wanted a break, (April 06, 1 full year) as Chemo could not be done with the head radiation, she returned to UK for couple of months, then while family went to Tenerife for 2 week, all 26 of us. Vi realised as the CA was rising, she would have to have further Chemo, but the break did her the world of good, had problems in her throat, difficulty in eating, and felt that she had a 'hair ball' ( Shrek 2)when back in Jordan in September had full workup including the new PET combined CAT, showed up the usual same hot spots all in lymph nodes, MRI showed complete disappearance of Brain spot. However CA was at her all time high of 2450. Although physically and mentally she now felt great, apart from the throat problem, so 1st week of Oct started the 1st session of Topotecan, so far, fingers crossed, she feels good, no real after effects apart from low blood counts, her neck has reduced back to almost normal, lymph nodes had to feel, as as said ca now 936. So there's hope on the horizon. Her Onc says, as far as he feels, as long as there are no major organ effected, and she stays mentally strong, this is just a chronic illness that can be treated or controlled. Steve

[sueg]

Oh Steve brilliant news on Vi.I wondered why I wasn't getting any answers to my emails.I'll resend them to the new address.
Sue x

[Jatoo]

Dear Steve:

Thank you for this post. You should, since we will learn a lot from you. It's great that Topotecan is working. And it's also great that now she can start eating. My wife went also to the lymph nodes (That's why stage 3C). She was given Neupogen on the Ist day right after the first cycle. And yesterday she had platelets transfusion. So she cannot be climbing on to ladders.

And what is finally brilliant (acc to Sue) is that 4th or 5th reocurrence does not matter (although it matters - a contradiction) because it can be cured and that would be fantastic. So keep posting Steve and regards to Violet. I will also pray for her. Can you update us as to when she was first diagnosed and her first recurrence? Thank you.

All the best,
Jatoo