Update on Barb

[MikeF]

We met with Barbs Onc. yesterday had blood work done and shes there today for second TDM-1 treatment. I know its too early to see a response but I wish this stuff would hurry up her skin mets are all over her chest and working around the back of her left shoulder. I cant imagine what it must feel like knowing thats its going wild and not sure if the drugs are working. My concern at this point is we are relying on Herceptin to carry the chemo and Im not sure the Herceptin is working. PLEASE continue to pray that this works she was so excited to get what appears to be a fantastic drug but so far we cant see any improvement.

[Nancy L]

Can you please tell me what side effects Barb experienced after her first infusion and when they started? I get my first infusion this Friday in the a.m. I have to drive eight hours to get home and I am planning to start the drive early Saturday morning. Thank you.

[Jackie07]

Mike,

I think the doctor probably won't consider switching the drug until after three doses. Hang in there. Search the T-DM1 links and see what time frame others have reported as well as other options.

Sending y'al good vibes.

[MikeF]

Nancy

Barb has always been very private which really complicates things. Every drug she has been on has had no negative side effects. I have gone to every meeting with the doctor and every time he asks if shes had this or that its no, no, no. So I guess what Im trying to say is I would'nt rely on Barb to gauge side effects. Maybe after this second dose we will see a different response, I'll try to keep you all informed. The only thing we were concerned about after the first treatment was a tightness in her chest which we thought might be a heart issue but the doctor said there where no signs that he could see to indicate a problem there. He feels that the mass in her left breast has solidified considerably, which we knew, and thats what is causing the discomfort mainly at night when trying to sleep horizontally. I dont know if this helps anyone or not but there it is.

[Redwolf8812]

Prayers, prayers, and more prayers...

[chrisy]

Mike,
I had no "visible" disease, but at my 6 week scan on tdm1 I had reduction in tumor size and decrease in SUV on the PET. I had minimal side effects, the first day I was pretty wiped, I had a low grade fever on day 3-4. One weird thing was on day 4 I had acute pain at the tumor site, which I imagined to be screaming cancer cells.

As to how could work after Herceptin failed, I asked my onc that question, and she said its different because you are not relying on the herceptin to deal with the cancer, just to deliver the payload. So herceptin " not working" Depends on what you are expecting it to do I guess!

I pray this works for Barb

[Pray]

I too pray this is working for Barb and You and She see good results soon! God blessings to your beautiful family!

[Paula O]

Mike, this has got to be really tough and my heart goes out to you guys. How we all are rooting that this will work well in time for your dear wife! Please give her a loving hug from all of us Her2 sistas and tell her we are cheering her on.

I just prayed for you, Barb, and those precious kids. How old are your beautiful children and how are they doing?


Paula

"Sometimes on the Rock I tremble,
Weak of heart and faint of knee.
But the steadfast Rock of Ages
Never trembles under me."

[MikeF]

Paula thanks for the kind words we apprecite all the prayers from Barbs HER2 sisters. I really need to update the profile picture. The beautiful children on Barbs lap are our Grandchildren Gabe is the oldest he's 6 and Will is 4. Those two are what keeps Barb going we cant get enough of them, luckily they live locally so thats not much of a problem. Although we occasionally worry that they are bringing in things that may be harmfull to Barb, colds and flu things like that. On another note last night was an interesting evening when I got home from work Barb was running a high grade fever 103.5 and had developed a cough. Its so hard seperating what may be side effects of the TDM-1 and what may be something more , she just had her second infusion Tuesday. We called her doctors office answering service and when the nurse called back she suggested taking her to the emergency room. After a cat scan of her chest and a chest X-ray they called it a very slight touch of Pneumonia and pleural effusion. They prescribed an antibiotic and sent us on our way. Now if we can just get my insurance to recognize that the pneumonia wasnt caused by the TDM-1 we will be OK. They have already told us they wont pay for the experimental and if Barb develops any complications that they could blame on TDM-1 they wont pay for those either. AS IF LIFE ISNT COMPLICATED ENOUGH. There I feel better now that I have that off my chest. Seriously we are wholeheartedly trusting our GOD to have HIS way in this and give him all the glory regardless of the outcome.

[Paula O]

Tell Barb that with her youthful looks she was mistaken for a beautiful Mommy snuggling up to her own children in the photo. What Cutie Pie grandkids! I'm sure their company is excellent medicine for Barb along with the laughter they bring.

How about you, Mike: how are YOU doing, if you are comfortable sharing? Our husbands can bear a great deal of stress right along with us. Don't forget to take really good care of YOU too--like eating well, allowing time for a walk/de-stressers, getting adequate rest, etc. Those are things that will allow you to give your all to the challenges you guys are facing together.

Paula
P.S. We're heading for Oak Island, N.C. this week--I noticed you are in Shelby. Any changing leaves yet? It's still summer weather pretty much in Florida and I look forward to the changing season next week and some crisper temperatures.

[phil]

Know that we are rooting for you and your wife, praying too. Give t dm-1 more time, after 3 doses L . saw 3 out of 7 tumors disappear in liver. Then saw slower but steadier reduction from feb to Sept. one tumor left, no pressure on kidney, bile duct anymore so stents were taken out. By Nov 2011, NED. Wishing , praying for same , or better results for your wife ! I am sorry you have such a fight w/ ins., tdm-1 causes a fever , but not pneumonia that i am aware of. Fight them ,. if needed that pneum. could be from any no. of sources , generally weakened resistance from the older chemos that ins does pay for ! , or issues in lung from cancer

[MikeF]

Phil;
Always good to hear from you I consider you a big brother in this fight were faced with.

Paula
No changing leaves here and Im sure the coast will offer less maybe up in the mountains north of us. We are actually planning to be in the Oak Island area next Friday for 1 week. My employer pays for education hours once a year and we've always tried to get out to the coast on their dime when possible.

[Pray]

I hope you and Barb have a great time! You both could use a nice break! Peace my Friend. I'm always hoping and praying things work out for you both. Gods blessings to you both!

[Paula O]

Mike, I don't know if it would work on either of our ends (zero pressure or expectation, just an idea), but if Barb is up to it and she is interested and could use some encouragement which I'd love to be a part of, we could exchange cell phone numbers and perhaps my husband and I could meet with you guys for a short visit next Friday afternoon. We have family activites with the Little Pink Houses of Hope group planned Friday morning and night, am not sure yet what is happening Friday afternoon, and we leave for home early Saturday morning. Anyway, if you guys would be interested in that possibility then PM me your cell phone number then I'll give you mine, and we could play it by ear. I don't know how much internet access I'll have next week, might not be much--I'll check back if I can if I don't hear back from you before leaving tomorrow morning. It would be fun to meet you guys if it worked out.

Paula

[KsGal]

Lots and lots and lots of prayers. I, too, thought those were your children in the picture. She certainly is a beautiful youthful grandmother.

[BonnieR]

I, too, thought they were your children! She is so youthful.
And I am growing to really dislike your insurance company ALOT!
God bless you for being the rock that you are. You have my upmost respect.
Keep the faith.

[Mandamoo]

Mike - I had my first dose this week on Thursday. I had a slight virus to begin with but was recovering. On Saturday morning I was running a slight temp and have had achy muscles and joints. I have antibiotics on standby if this virus turns nasty on me. I've woken up ok this morning though i have no visible disease to look now (tykerb xeloda got rid of my skin mets) I hope it is working away inside. I hope Barb is feeling a lot better soon and starts seeing a regression in her disease. (My onc said some people are slow to respond but then keep responding.)

[Dianedack]

thinking of Barb & praying for success with TDMI.I am hipong to go on trial next year Love tp you all I am hanging in there. xx

[MikeF]

Saw Barbs Onco today to follow up on the Pneumonia. After four days of antibiotics shes still running a slight fever and He things it may be an infected port on top of the Pneumonia. They did a couple of blood cultures to confirm and started her on a antibiotic through her port we go back tomorrow to get the culture results and more antibiotics. Hes not messing around with this apparently hes seen this kind of thing before and jumped right on it. Will keep you all informed im not sure if this helps the TDM-1ers out there between the TDM-1 given Tuesday, the Pneumonia diagnosed Thursday, and now a possible port infection Monday Id say we have no accurate info to share as far as side effects of TDM-1

[NEDenise]

Mike,
It sounds like Barb is in good hands!
Praying Barb feels better soon!
Denise