Where is Cam/ibspouse?

FloridaLady

Has anyone heard from Cam and Herbie?

Flalady

ibcspouse

I am sorry I have not responded to the PM's or have not kept you updated.  The reports on the trial are becoming very mixed.  I have been doing more research on what other trial is available to see about getting Cam into.  Her Skin mets are still very much under control.  I have already spoke about some "undefined lumps" that are in her right breast.  These do not concern her primary onc very much, but has put her in jeopardy of being dropped from this trial. 

Last week Cam had her CTC's ran.  For history, when she was first dx, they were at 159,, when she had gotten to "NED" for a while, they were at.  When the first skin met spot appeared, it was at 1, 10 days later when the mets exploded over her torso, right before the trial began, they went to seven.  Last week, they were up 10 fold to 72,  PET/CT stills shows no distance mets, just small uptake in right breast.  But since her CTC's have been a good indication for her, we are meeting with both Oncs (regular and research) next Thursday to decide what to do. 

I research nurse told us of the new trial starting soon for SAHA with a IGF inhibitor..much like the IMC A12 she is on.  The Doc and I believe that the mTOR inhibitor is what is not working.  In all past trials of it, the Cancer has bypassed the pathway that is blocked, and as Flalady has said, it has not had great success.  So I hope the SAHA trial will be open soon, it is what we wanted to begin with, but trials had not started. 

Really can't complain about the trial Cam is on, she has gotten a three month run, with almost no SE's and has good relief from skin mets.  I was hoping it could be longer.  She still shows no super or axillary node involvement which she had upon dx.  Again I am sorry I have not responded to PM's and such, I hold each of you very dear to my heart.  I just did not know what to say, even to my best bud from Florida..who I am keeping in my prayers.  Laura and Gg ..thank you.

FloridaLady

Missed you guys!

I'm happy Cam is still doing well.  My oncologist also spoke to me about the SAHA...I don't remember now if he thought it was something that I could be a part of right now.  Please let us know what you find out.  I will have my second tx next week.  I do see some small improvement but I'm already looking for the next treatment options.  I think I have way to much disease to continue with this trial more than a few months.

So glad you touched based with us.  Knowing Cam is doing well gives hope.

Flalady

Caseysmom

It's good to hear from you and thank you for the update.  I'm so happy that Cam is doing well she is very lucky to have you.  

Keeping you both in my prayers.

Hugs

Laura

FloridaLady

Herbie,

How deep is Cam's tumors?  If they're not deep she can do the Thermdox trial and they will fly you to Florida.  Just a thought.

Flalady

ibcspouse

Debbie,

Her tumors are not deep, the problem is the size of the area.  Neck to below waist line, from side to side including areas on back.  Her punch bx's on skin, show almost all necrotic cells.  The symptoms are still present..the redness, and edema, thickening of skin, erythema rash are persistent, but not causing problems.  The count on CTC's do scare me, and I don't know if Thermdox will treat "whole body" or only local areas that receive treatment.  Cam has never had Radiation, so site treatment is available for her.  Still keeping options open, so any help and info from you or the rest of you gals is needed and appreciated. 

You are still in my prayers

Herbie

moodyk13

I just talked with Herbie. He hasn't been able to post because his computer got a virus and it logs him out of the internet after a couple of minutes. He has been unable to read posts, answer messages, read emails, etc for about a month now.

I offered to help him clean out his virus (yes, I do that on the side too-----LOL) and he said he hasn't really felt much like being online anyway.......

Cam has stopped responding to the treatments so she has been dropped from the clinical trials. As you can imagine, this has put quite a damper on both their spirits.....Her CTC's are slowly rising. They have gone from 0 to 92 in the past few weeks and they are waiting to hear from current blood tests.

Her skin mets are starting to spread, covering her abdomen and right breast again. But he said "on the bright side, she has more energy now while not getting treatment". Bless their hearts!

He gave me permission to go ahead and post this update, I pray I am doing so accurately!

As many of you read from an earlier post of his, they are getting the apartment for free still because of all the extras Herb has done for that community of folks. Well, we all know the kind of person Herb is, and not surprisingly, he is probably doing even MORE volunteer work.... He sounded kind of tired. This was the first time I have ever spoken with him on the phone, so I have nothing to compare it to, he just sounded like a man who was tired.

I ask all of those reading to just take a moment to lift up Cam and Herb to our Lord Jesus for healing and rest. Herb said he does believe in the power of prayer, I believe in the power of prayer. Even if you are unsure of the power of prayer, God will hear you.

FloridaLady

Moody bless you for the update.

I will pray for our dear friends,  I miss having them on board,

TenderIsOurMight

Prayers for Cam, Herb, Flalady and all struggling with IBC.

Tender

lexi4

Prayers for Cam and Herb. I am sorry that Cam is not responding to tx at this time but hopeful the Dr.s will find a new tx for her. Saying prayers right now for them. For all of us.

Hugs and Prayers,

Lexi

Estepp

Karen.. thanks for the update... Poor Cam.. bless her soul... Herbie.. hugs honey..

I will be praying, count on it!

Laura

NYmom60

Keeping Cam and Herb in my prayers.

Monika 

hollyann

Moody please Pm me their addy if possible so I can send cards of encouragement.....

Cam and Herb, praying for you that all your needs are met and that you find something to help you, Cam........

vivre

Cam, Herbie, and Fla Lady, you are all always in my thoughts and prayers. How I wish I could do something for you because you were such a Godsend to me. God Bless you all.

moodyk13

Hollyann,  I will try to remember to call him back and get his addy.  I want it too and I forgot to ask. 

I am baby sitting their litte dog "Tessie" today and I want to send them a video of her.  He and Cam had to find another home for her because they could'nt take her with them.  It broke both of their hearts.  I am so blessed that Herb trusted me enough to allow me to place Tessie for them!

My friend's wanted her sooooo bad, and they have not come down off cloud 9 since getting her!  They had to go to Washington, DC this week so I am lucky to get to care for her for them.

She is sooooo precious!  Here is a picture of her in her Easter dress:

Her full name is "Cam's Contessa" and they call her "Tessie"

Caseysmom

moodyk13:

Thank you for the update keeping both Cam and Herb in my payers. 

Hugs

Laura

moodyk13

I talked with Herbie this weekend and glad to report that Cam has started responding to treatments again!  He said that she can now go back into the clinical trials!  Woooo Hooooo!

He sounded so much more upbeat this time and def more rested. 

He gave me his address so if anyone would like to send he and Cam a card or anything, plz PM me and I will give it to you.

lexi4

Oh Moody!! This is very good news!! Thanks for letting us know how Cam is doing.

Lexi

Caseysmom

Moody:

Thank you for the update.

Laura

bks

I also go to Houston to Dr. C and had dinner with Herbie and Cam this summer at their apartment.  Herbie doesn't really email anymore so I would love to have their address to send Cam a card. 

valerieinmichigan

I have been flying to Houston every month and being treated by Dr. C since 2007.   I know Cam and Herbie very well.  Herbie and I are kindred reseach spirits !  So glad to hear that Cam is doing better.

My next trip back will be October 13-14.  Would love to meet other IBC'ers that are also going there.  Please PM me.