iowagirl
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Gavin and Marian, Thank you for your response. As I said, I’ve been following the research on this since I was diagnosed and found a few articles about it. I think I may have actually posted about it a time or two….or maybe it was just in private emails to other CC people.
I’m just very curious as to where the first trials WILL be held…..and if they “might” include CC patients (under the liver catagory), …..and….of course, WHEN will they officially start recruiting?
Due to the way it was invented and by a non-medical person, it was initially looked upon as junk science. The inventor was a ham radio operator and radio station owner. But, having a husband who is also a “Ham” (as they call themselves) and an electrical engineer involved in radio development for 41 years for a major company dealing with radios for high tech planes/defense industry, I realized that there was some validity in the “idea” so it caught my attention.
The Kanzius machine is not a glorified microwave oven. It does not damage other nearby tissue as a microwave would do. Both use radio waves….but the frequency is what is changed to crreate a different result. Microwaves zero in on water -containing material (think human tissue which is made of a large percentage of water) . The Kanzius machine uses a different frequency that doesn’t act on water, but instead zeros in on the nanoparticles that are injected into the body and which bind with cancer cells. It heats up those nanoparticles and they then vaporize the cancer cells or tumors. That’s a pretty simplistic explanation, and I still may not have explained it 100% accurately, but I’ve seen people refute the Kansius machine, arguing that it was nothing more than what is already available with ablation we now have and would simply be a big microwave oven and if the operator wasn’t totally accurate, they’d damage other tissue. That kind of remark is a lack of understanding of the science involved in radio waves. I do not claim to know all about the science involved…..but just enough to get excited about it.
Dr. Curley, who has been conducting the research on the Kanzius machine is a world known researcher with Baylor School of medicine and with ties to MD Anderson. He did some of the original work on “ablation” research years ago. He has a distinguished reputation in the medical research community and as such, the idea of him putting his name and reputation on this for research gives it more validity. This has garnered the attention of many in the field of cancer research and treatment for the last several years and now that the FDA has approved human trials, it seems that there should be more info forthcoming. Due to the nature of the machine….killing the cancer cells immediately, it would seem that results should be fairly fast and hopefully, it won’t take a long time to get results posted to the medical community. But, I don’t know how all that works.
The main issue that I can gather from the reading I’ve done, is that of the body excreting the residual nanoparticle and destroyed tissue (depending on the bulk) without causing problems with the kidneys. A researcher iin another country is using a different nanoparticle with a similar machine he put together. That nano particle breaks down faster and better biochemically, than the ones (gold and something else)that are currently being used in the Kanzius machine experimentation.
Basically…..it appears to me that this is not junk science and if the FDA has now approved it for human trial (which they have) it appears that they concur. Normally, I don’t get too excited about research, but this is one that if the Kanzius Foundation was still taking donations(they’re not), I’d donate some myself. And, though I’m nortiously NOT a gambler…..I’d buy stock if it were available. Since I can’t do either……Now, to wait and watch….pray and hope.
Julie T.
Genevieve,
Congrats to you and your husband on the great scan reports. Wonderful news. Hope you celeberated.
Julie T.
Gavin, Catherine and Marion,
Thanks for the help on the muscle cramp question. I realize this could be unrelated to the chemo, but it could be a depletion of some mineral that the chemo caused as well. Or…who knows. I read that in many cases, the cause isn’t known. Wonderful!! Meanwhile, if this happens to anyone….and they have someone who is with them who can get something for them……a hot compress on the thighs helps to soften the spasming muscle….just not right away. I actually used a compress again last night as a preventative.
As for the tonic water…..I did read about that. It contains quinine which can cause issues with the liver. That’s kind of scary considering that CC is liver related. Quinine has been given to people who have “restless leg syndrome” (my MIL used it for that….and ended up in the hospital a number of years ago). The FDA has pretty much banned the use of quinine pills for that reason. The tonic water available now, has very little quinine in it, but apparently enough to stop the muscle spasm if it has worked recently for Catherine’s dad. I may check into it….have one by the bedside just in case. I would think drinking one tonic water would not have the same effect as taking pills on a continual basis.
MARION…thanks for posting that write up on Dr. Rosenberg. It’s really good to put a face to a name. And MELINDA…great news about you and Lori…..wonderful to hear that others seem to be having good….no GREAT results from the immune therapy. If you hear anything about any of the others in the program, we’d love to hear more good news if they’ll allow you to share.
Julie T.
Suggi,
Yes, you can be premedicated with a steroid before undergoing a CT with contrast if the contrast is suspected as a allergy agent for you. I did that for two separate CT scans (3 months apart) and each time I took one pill at bedtime the night before the test and then again in the morning before the test. They weren’t positively sure I’d had a reaction to the contrast initially, but did not want to take a chance. Something happened both times after the two scans even with the steroid, so I no longer have a CT with contrast. Instead, they do a CT of my lungs without contrast and an MRI with contrast (different contrast) of my abdomen and pelvis. I’ve had this two diffrerent times now and its been fine. It just takes longer for the MRI than a CT. I’ve got a lot of allergies too., some the same…some different than yours, .so I understand about how difficult it is.
Julie T.
This is what I had. We went into surgery knowing that the surgeon might convert to an open surgery instead, but my surgeon, dr. Kaye Reid Lombardo specializes in doing surgery laparoscopically whenever possible. She also removed a lot of hilar lymph nodes to look for mets (no mets found). She was remarkable. Went home in three days.no transfusions during surgery. No complications.
When I was first at mayo, they briefly considered doing chemo before the surgery as they said it was showing some good results. I imagine it was to try to kill off any wandering cancer cells before surgery, because my tumor was otherwise very operable. However, I really didn’t want to wait…just wanted the tumor gone ASAP.
Michael, Welcome to the group, though I wish you didn’t have a reason to be here.
I was one of those “lucky” people to have intrahepatic CC and a month and a half later, had a large clot form in a leg and go to both of my lungs.
From the reading I’ve done, a blood clot is often the first sign of certain cancers, in particular those of the gastro -intestinal tractr…and among those, pancreatic cancer is most likely to form clots, followed closely by CC.
My clot didn’t occur until after my resection….possibly because I had been taking aspirin twice daily in the years before the CC was found. I had a chemo port placed in my chest a day or two before the weekend and during the weekend, I had some strange symptoms of almost passing out, very low blood pressure, temperature. My oncologist at the time, went to the office on a Sunday to examine me, because I was to have my first chemo on the next Tuesday. He decided I must have an infection in my leg that needed an antibiotic (the other one) because of some discoloration (which had been there for years….but he wouldn’t listen to me). He totally missed the signs of a blood clot. He barely examined me …just stood in front of me while I was sitting in the chemo chair and said we were going ahead with the chemo. During the chemo, my legs swelled and apparently during that time, is when the clot moved to my lungs. It wasn’t until a week later when I went to my GP and related all this, that she immediately said I was going to the hospital as she was sure I had a clot.
My current oncologist told me that it is almost unusual Not to get a clot with this cancer. It has a very high rate of clot forming.
I’m sorry that the chemo didn’t work well for you…but Hope that the Y-90 blasts the CC out of the water. Ditto what others have said…..it is very good to get more than one or two opinions on the treatment of this cancer….each case is very individual…..and different cancer centers look at each case differently as well and have difficult ideas and skill sets.
Julie T.
Well crap on the Novartis drug. Timing doesn’t seem to be right. But, maybe you can revisit that again as yet another option down the road if necessary. Hope the docetaxel helps you get better and feel better.
Dittos what Gavin said…..”we always knew you were special”. Seriously, we know it isn’t for lack of trying.
Julie T.
Kathi, Welcome to the CC Foundation and as a CC patient, I am very excited when people like you come on board to stir up the pot and generate interest and $$ for CC Research and hope that increased awareness also generates genuine support for patients and caregivers. As a CC patient, it’s good to hear that the CC Foundatin has someone who is eager and ready to work for the answer to the cause and the cure.
Thank you and again…welcome.
Julie TOkay…..I know this is going to sound vain….but my hair…..looks pretty bad. It’s been doing great…..nice volume….but this morning…..I blew my hair dry….and it just fell flat. The only difference,…hotel water and hotel shampoo. But, it has grown back, so for that, I remain thankful….and on better hair days…it actually looks kind of like I wished it would back when i was a teenager.
Really wished it would have looked better for the picture though.It was wonderful to meet Matt. He’s a very sweet guy. We shared pictures of our families(he has a beautiful family)….and stories. I think I knew Matt’s Cc history by heart, but my husband didn’t and I think it was an eye opener for him. Matt “looks” good…..and if you didn’t know what he’s going through, you would never have known. Though technically, I’m not old enough to be his mom….I wanted to “mother” him. If you didn’t know his age, you would probably think he was barely 35. What a sweetheart he is. We also talked a little about work history…and I think my husband would have loved to have talked with him for quite a while longer.
Matt…thank you for taking some of your time to meet with us today. We wish you only good results from your treatments…..and soon, you will get back home to that family of yours. Life may never be the same again….but I’ve come to understand, it doesn’t have to be….it only has to move on.
Julie
Gavin…thanks for the thoughtful reply. I’ve copied the review mentioned above, as well as a couple other articles from the web regarding the same subject, ie., usage of Metformin in type II diabetic patients as a possible way to stave off CC. I’ll give these to my Mayo onc for his opinion. It may only be that…an opinion, but one of the articles mentions that it has an effect in vivo and in vitro, which is a step further along, if I remember right, than it was when I last discussed it with him. So, maybe he will have more thoughts on it at this point in time.
As for the anxiety….it continues (as if I ever figured it would just magically disappear). Gavin…..whatever a “cuppa and a blether” is, it sounds like a good way to pass the time.
If it weren’t for babysitting the 3 month old grandson, I’d have just waaaay too much time on my hands to think about things. At least for most of the daytime hours, I don’t have time to think that much about CC……not with a baby either howling because he just can’t let himself calm down to sleep…..or all those baby smile I got today. Either way….he’s a wonderful distraction.
In three days, I’ll know my answers.
Julie T
Darius,
I’m sorry to hear that your mother’s CC has returned . I also had intrahepatic CC (5 c.m in left lobe) and had surgery (Feb 2014….removed left lobe). I’m still going through scans, watching for recurrence. So far, so good…..have another set of scans this week and I’m very nervous.
I’m curiious as to the following (if you are willing to share):
1. What stage was your mother given after surgery?
2. Was there any lymph node involvement?
3. Were they able to get decent sized, clean margins in surgery?
4. Was there any neural or vascular invasion?
5 . What size was the intrahepatic tumor?
6. Where was your mother’s surgery done?
7. What symptoms led to the CC being found?There are less intrahepatic CC cases than the other two kinds, so I am always interested in talking with other people with the same kind of CC as I have.
Julie T.
Well Gavin, I’m glad you mentioned printing out the review on Metformin. I did not even think of doing that….though it’s kind of a “duh”…why not? I will go back to my printer as soon as I have posted here and get the copy of the review in my Mayo packet.
Of course, I will post again when I get back and let you know what he says. I “suspect” he is going to say that the “horse is already out of the barn”, but it’s worth bringing to his attention again. I did speak to him about Metformin usage for people who have diabetes as a possible preventative against cholangiocarcinoma, but at that time, I think info was preliminary….nothing to really hang your hat on. This review sounds a little more serious.
Thank you for your good wishes for the test results. I’m having some major problems with anxiety before these scans….even more so than other times. Have had a few vague strange feelings in my belly and of course, my mind goes into hyperdrive, imagining what it might be. Have had a few breakdowns with tears….just really hate going to these scans and each time having the build up prior to them. Sigh…but that’s the way it is and will be. People have and are going through worse. I will get through and past this too.
Julie T
Gavin, After reading the study, I understand it to mean that once CC has been identified, then Metformin does not have any effect on suppressing CC (no studies to indicate anyway).
However, I’m wondering about the circumstance of someone who has had a resection, adjuvant chemo and no evidence of disease. Is the published review to mean that Metformin would have no effect on supressing CC from that point on? OR, does the review mean that once there is CC, that is not resectable, then Metformin would do no good, but if a patient is cleared (as much as can be determined) of CC, then Metformin could be prescribed as a possible preventative?
I’m particularly interested because I’m a type II diabetic (on insulin), and currently one year, 4 months post surgery resection, and 11 months post adjuvant Gem/Cis chemo and currently no evidence of disease (scans coming up this next Thursday/Friday at Mayo). I will be meeting with my Mayo oncologist on Friday the 10th and would like to discuss this with him.
Julie T.
