1

(2 replies, posted in Clinical Trials)

My M-I-L just started the MM 121 clincial trial. Its in the 2nd pahse I think. Anyway she has had the drug 2x and has taken a nose dive. White counts are at 2 and platelets at 17.  hmm 

Does anyone else have any experience with this? any information?

She has been in the hospital for 5 days and had 6 transfusions... they can't let her out b/c her counts keep going down.

She's stage 4 with mets to her lungs and spine. They gave her 1 year - she's 3 months past that! smile

Thanks!

2

(3 replies, posted in General Discussion)

She doesn't have a stent. She has never had a bili problem or been ichy or yellow this whole time. She has just had trouble eatting b/c it hurt - like a gallbladder attack and that's how we found out she had cancer.

I think the chemo has been helping her live longer, but it also seems to be killing her at the same time. Its all so over whelming.

Thank you for your response  smile

3

(3 replies, posted in General Discussion)

Its been a very long time since I have written on this forum, I have forgotten how helpful everyone is!

My MIL has tumor that have spread from her bile duct / liver to her lungs and her spine. She has been on chemo for 13 months and they have just suggested she stop chemo and look into clinical trials.

She weighs 97lbs now. Just this week she started retaing fluid in her abdomin. They gave her lasik (sp) but it didn't work. She has been unable to go to the bathroom, and then this morning she had blood in her urine and a fever of 100.4....

I'm worried this is a very bad sign.... can anyone tell me if they have experienced anything similar? She is at the drs now and is waiting for a culture to come back to see what is going on, but I'm so anxious I thought I would write here and see what anyone has to offer.

This is all so hard happening right around christmas.

Thank you

Lily

when my mother in law was on the same chemo treatment she often complained of shortness of breath. Now that she is on a different treatment, she doesn't ahve those symptoms.  I wish I could say there was something that seemed to help her but there wasn't. Just reminding herself that it was normal and trying to slow down was all that helped.

5

(7 replies, posted in General Discussion)

Thank you all for your responses. Diane will have an 5FU pump and then get bi weekly treatments of Irinotecan and Leucovorin - I believe the 2nd too are the right names but I will double check.

I will use the search function to see if anyone else has been on those chemos - but if you want to tell me any side effects you had with 5FU that would be helpful. My mother in law has been tired, lost a lot of weight, and had breathing difficulties associated with the Gem / Cis, but hasn't lost her hair. Are any of the new chemos I listed more likely to make her lose her hair?

Thanks again!

6

(7 replies, posted in General Discussion)

My mother in law was told they will be switching her chemo due to lesions on her lungs that have come back. She was previously on Gem/Cis that she recieved once a week every other week in the hospital. I don't have the names of the new chemo(s) she will be on yet, but I do know they said she would be getting some chemo in office and then going home with a pump.

Can anyone tell me anything about the pump? Any "heads-up" type of info from people who have had it?

She has been on the same chemo for 8 months, and then they tried a themosphere radiation treatment. The scans (PET and CT) came back with no change to her liver / bile duct tumors and with lesions returning on her lungs where they had previously disappeared from.

Any info is helpful! I will update with the names of her new chemo when I have it.

Thanks so much!

7

(0 replies, posted in Radiation Treatments & Options)

http://www.uwhealth.org/healthfacts/B_E … 99450.html

Does anyone have any expereince with this?

My mother in law is having this procedure done today. Has anyone else on this board gone through radiation beading treatment for thier cancer? She was told this is relatively new so I'm not sure how many oncologists recommend this.

Here are 2 links with information about the treatment - any feed back at all would be helpful. Thanks!

http://www.uwhealth.org/healthfacts/B_E … 99450.html

https://www.asrt.org/Content/News/Indus … 80306.aspx

9

(9 replies, posted in General Discussion)

We did contact the Dr. and they gave her Benadryl and Tylenol... they said her reaction was normal and nothing to worry about so that's good! I posted an update on her treatment in the General Info section! Thank you for following up!

10

(5 replies, posted in General Discussion)

My MIL uses:
Tai-Go  (this is for energy level)
Liquid Life  (Liquid vitamins)

Its worth a shot if your Dr says its OK take smile

Here is the list of supplements :

Paw Paw Cell-Reg  (17 mg)
Super Selenium Complex  (200 mg)
Essiac Tea (sp?)

Tai-Go  (this is for energy level)
Liquid Life  (Liquid vitamins)

We got Great News that Diane's cancer (my MIL) is now concentrated in one big tumor in her Liver's left lobe and one small lesion in her right lobe. Her tumor was the size of a baseball in her liver with fingers going out into the bile ducts.

Diane is responding to her treatments so well that she is a candidate for bead radiation and chemotherapy that was not an option six months ago for her. The specialist that is doing this is the only one in this area (Cincinnati) that does it. It is millions of beads of radiation that are inserted in the veins, vessels, and arteries that feed the tumor to kill it. It is different than seeding. It is not routinely done for Cholangiocarcinoma since it is often ineffective. The doctor is willing to try it since Diane's body has done so well with Chemo. (She has lost a lot of weight, and needed 1 blood transfusion and 2 platelet transfusions. She has been on chemo since Oct. 2010.) It is done in conjunction with a femoral artery angiogram to map it out and another later to do the procedure. They hope to virtually end the left lobes existence and the cancer's existence with it. Of course there are dangers in this procedure also.

She will be continuing her regular chemo treatments while adding this new procedure.   Chemo takes it toll and we are now going to push that envelope even farther with this added therapy. It is going to take a strength beyond what she has all ready been pushed to her limits, but not God's limit, and we will look to Him for supernatural strength.

I wanted to share this with the community b/c we were told that this treatment isn't tried often. If this works for her maybe it can work for others as well.

She is on Gem/Cis - 2 weeks on one week off since Oct. 2011 until now.
1 blood transfusion, 2 platelet transfusions.
She is also trying some supplements and teas that an herbalist told her would help. I will get the list from her and add it here when I have it.

She has also been covered in prayer this whole time and we believe in the power of prayer over here smile

13

(4 replies, posted in Suggestions)

Thank you so much!!!!!

14

(4 replies, posted in Suggestions)

If I missed a webinar but would like to hear it are their recordings saved of some of them to playback?

Thank you!

Lily

15

(9 replies, posted in General Discussion)

Thank you all for your help. There is a ton of helpful information here! smile My mother in law had a blood transfusion yesterday and feels worse today. She said she had a slight fever and some swelling in her face. I just hope in a few days she will feel as good as most of the people on here say they feel after a transfusion. Her nurse told her she might need one more transfusion before she feels better.

She also normally just gets PET scans, but I was reading that a lot of people on this board get CT scans instead and I was wondering what the difference was. Thank you PCL1029 for all of the information! That was very helpful!

Her tumor markers went from 1300 to 938 and then this last time the doctor said the markers went down again but did not tell us by how much. Her PET scan results said no change. Which is good and bad - no growth is good, but shrinking would be better than staying the same smile

Thanks again for all of your help! I love this site and am so glad we found it when she was diagnosed. There is so little info on CC out there!

Lily

16

(9 replies, posted in General Discussion)

I was wondering how many of you with CC have had to have blood transfusions? Also, were there any side effects from the transfusions we should look out for?

I also had questions about tumor markers. I have read on here that they are not the best source of info for whether or not the tumors are shrinking, but in your experience, how well have the numbers matched what was going on with your cancer? When the numbers go down, how much do they have to fall before it means things are shifting?

and lastly - I am trying to make sense of why some people get PET scans while others get CT scans most often to check the progress of the Chemo? and what about MRIs?

Sorry to have so many questions!!

Thank you!

17

(3 replies, posted in General Discussion)

I visit here daily, but do not post very often. Anytime my MIL - who was diagnosed on Oct 2010 with CC - has a question or new symptom I always come here first and find such wonderful information and positive people.

Today I thought I would look around the web to see if there were other sites like this one where I could meet more people / get even more info. I found a handful of sites, but was shocked at the negativity (mostly relating to doctors and not agreeing with statements made by others with CC) and I just wanted to come back really quick and tell you all THANK YOU for always being positive and supportive even when things are hard and go wrong.  It is a wonderful community you have created here.

THANK YOU!

Lily

18

(2 replies, posted in General Discussion)

Can you post a link to this information so we can read more about it?

Thanks!

19

(2 replies, posted in Chemotherapy)

My mother-in-law is only on Gemzar (and Cis - but no radiation). Her only side effects have been swelling in the legs, tiredness, and a little lose of appetite. No nausea though, and she has not lost her hair and she has been on chemo for 4 months. Hope this helps a little smile

Good Luck to you.

Thank you everyone for your kind words!

and Peony - keep us posted on your husbands results. Until them I will be praying for healing for husband and for your whole family!

woo-hoo! That's great news! Congrats!

Here is a link that may be of help.  Dr Benga is a liver cancer specialist. My mother has bile duct cancer withs mets to liver and lymph nodes. He is treating her successfully. She is 54 and stage IV. hope this helps!

http://healthnews.uc.edu/imagegallery/?/10835/

and its working! My mother in law was diagnosed on oct 22 2010 and started chemo Nov 1 2010. She has just finished with 3 cycles of chemo and her PET scan shows that its working! The cancer that was in the lymph nodes around her sternum are gone! PTL! and the cancer in her lungs / bile duct and liver has not grown! She has now been scheduled for chemo through April when another PET scan will be ordered.

She has Stage IV cancer and was given 1.5 years on chemo. Were only 3 months in, but so far so good!

Amen smile

Lily

24

(6 replies, posted in Suggestions)

Kathyb - that's a great point about sharing information. I also would like to clarify that by "vent" I did not mean about the patient, I meant about fears and feelings around declining health of the loved one and or possible death. I don't feel comfortable talking about those things in front of the person it would be affecting because I understand that I am on the easy end of this stick. I am sorry for the confusion.

Cancer centers actually have seperate support groups for the patient and the caregiver. There are no groups near me.... They believe it is good for each side to have a place.  But I do see that people mark there posts "sensitive" so I can just do that.

Thank you.

25

(1 replies, posted in General Discussion)

I have read on hear from multiple people that being on steroids gave them energy and increased thier appetite. My MIL is on them for 3 days after her chemo treatments and she is losing almost 3 lbs a week and she is exhausted. Did any one else experience shortness of breath / a DECREASE in appetite from steroids?

Thanks!