I need advice fast!!!!

[beat it]

My MIL has been told her he-ben-glow-ben is low so a filling in onc told her to do a clinincal trial, I was not present and dont knnow what is happening but will stop in an my lunch to see (round 3 is today)

This is her RED blood cells right? Why? Isnt chemo the white mostly that are effected? I must get answers to be certain and do you have to sign to do clinical trials?

Bless her but she just nods and agrees with out questioning and seeking a plan ...........

Help!!!

Beat it!!!

[Muriel]

Hello beat it, During chemo, both the white and red blood cell counts can drop below the normal range. If they get too low, the patient is often given neulasta or neupogen injections to increase the white cells and/or aracept or procrit injections for the low red count. The hemoglobin also may drop below the normal range. This is all quite normal for chemo. I had carbo and taxol (not the avastin, tho) and my blood counts dropped between the second and third week, but not so low that chemo had to be interrupted. As for the trial, I have no idea what that's all about. Find out if it was to change the drugs in the chemo or to try a new way to maintain good blood counts. Yes, she would have signed a consent form to be included in a clinical trial. Good luck!

Muriel

[beat it]

Thanks Muriel!!!

I'll ask questions when I get there, hope she hasnt signed just yet, investigation is important, I know they are docotrs but they told me she'd be nearing death by now too, we are the ones advocating for her ( ok I am ) but yet today after 2 rounds of chemo and 3 months of Mega dose vitamins we are missing alomsot 2 full tumors. That was not acheveived completely by just listing to the onc and doing only what they said to do (which was chemo only for quality of life.). They flat told us chemo would NOT reduce her cancer it was too far gone!! Any way......sorry for venting.

Well I appreciate any futher info any one wants to share and I'll get more educated on this asap.

Beat it!!

[Don Wood]

In addition to the good info Muriel gave you, I would encourage you or someone to always go with the MIL when she visits the doctor. That way, questions can be asked and you have two people who heard what was said. Keep us posted. Don

[Welthy]

Sounds like the combo is working quite well for your MIL. I'd question going into trials at this point when she is apparently responding so well to her current therapy. A lot of time can be bought, even for patients with extensive cancer, by continuing with chemotherapy regimens.

She may just need a break to get herself up-to-snuff again. They need to start her on procrit for the hemoglobin. Don's right, someone needs to go with her so you can get the real scoop.

Good luck and my best to you,

Welthy

[marym]

Hi,

Red and white counts can be effected by chemo, as can platelets. I had to have two transfusions for red and one platelet during my initial chemo. Then I received aranesp once a month.

Trials do require signatures.

Good luck.

Mary

[Treebywater]

I'm confused--do you think they meant a clinical trial to try to deal with her low red count/platelets? Or did they mean she needs to try a new treatment altogether?

[beat it]

I normally do go with her, but couldnt today. UGH.

She signed the form, they injected her with a drug and gave her pills to take for 16 weeks. I feel so ANGRY!!!! This trial she was put on has 2 pages of possible side effects then to top it all off it may be a PLAECEBO!!!!! So this fill in Doctor tells her he is so concerned about her low he-ben-glow-ben numbers he wants to act fast, signs her up and injects her.

UUUUUGGGGHHHHHHHH!!!!!!!!!

There is no guarrentee she'll get a response and if the numbers keep dropping it'll mean a blood transfusion. He leads her on with the speel about it being free and all, what about the transfusion would that be free??? Yeah right.

There are other methods to go on to regulate this. My mil is very smart but not with medical issues. That trust is placed in Doctors. Like we all do and this time around I think she was cheated. I wonder what type of kick back is with that trail?

Hope this doesnt effect her progress or one of the many side effects from the trial gets to her....

OK,OK, OK, I've never said this but.....

I HATE CANCER!!!

Beat it!!

[beat it]

Sorry,

This is a trial for the low red blood count, they did not change her chemo regimine.

I just dont believe this onc. If he REALLY was concerned about her low red blood count ( which was good enough to take the chemo) he wouldnt have put her on some "unknow study" remember this could all be placebo. He would have dealt with it in tried and tested way that gets results.

I feel while she is very intellegant and coherant mind you that he took advantage of her lack of medical knowledge and signed her up with out a genuine concern for her.

Beeat it!!

[Treebywater]

Some meds that are still in trial phases don't have placebos... They just do trials to figure out dosing and so on.

Perhaps it's one of those trials, so the doctor felt it would be a good option??? You might call and ask and get a little more information.

[Welthy]

I agree, I'd be calling and asking some questions big time. Why not go with a known (ie: procrit) when her counts are so low.

Let us know what you learn.

Welthy