First Chemo Yesterday (Tues) Swelling, Itching and more Onc Troubles

Matt….first….the blood test will only show that you have had H. Pylori….and not necessarily that you have an active infection. That said, it’s hard to get rid of it…very resistant these days to antibiotics….so the regimen my GP suggested was 3 different medications at the same time to eradicate it.

HOWEVER, I had asked her to have a breath test or poo test as these will detect actual active infections of H. PYlori. She did not think those were available here in our area…and possibly only in a study situation. Interestingly enough, the oncologist as least did say he could do the poo test in his clinic lab, so that is what we are doing. It will hopefully show whether there is an active infection in the gastric tract that needs to be treated, rather than treating antibodies that might indicate a previous infection that has been cured. That said….it can’t be cured easily, so unless you were on something really strong for a number of days, an infection likely would still be around.

The current reading I did this morning was that they think reflux in the duodenum may be a way that H. Pylori makes it way into the bile….but that isn’t confirmed. I think they had some other ideas.

My husband is going to be tested,….as he had a rare tumor of his colon (very large, but caught before it turned malignant….even the surgeon told me it was cancer the day it was found on a routine colonoscopy). He’s had two ulcers, but each time I think that no H. Pylori was found….but they’re still checking his old records. Now we are trying to decide if our son, daughter in law and kids need to be tested, because this is easily transmitted with body fluids….and that little grandson of ours traded bites of food with me…and he with his parents. Sigh…that just breaks my heart…but at least if a poo test can be done, they won’t have to do a blood draw on the little one.

Thanks for the links to Hope House. Will let you know what i decide on going back to Mayo or what I find out about Hope House. I think it may be my first call after looking at the link.

Julie T.

Matt, did not know there was a Hope Lodge via Cancer Society there. I have experience the Mayo system twice in my life….once 35 years ago when they removed a volleyball , benign tumor from my uterus that let us go on to have a full term birth of our only living child after local specialists said I would probably have to have a hysterectomy. They actually lied to us…flat out lied that they didn’t know of any other doctor /surgeon to try the surgery except their buddy. As it turned out the Mayo doctor was one of the two top gynecological surgeons in the world at the time and his response was that they do this surgery every day, and though my tumor was some larger than most, it was doable and he expected us to go on to have another child, which we did. I actually wanted to go back to Mayo for the pregnancy, but was nixed by my husband….so we went to the U of Iowa, because I wouldn’t go to ANY of the OBs here in town.

Now, here I am again, and as before, Mayo didn’t disappoint…or not much. Having an oncology fellow as my primary doctor, was a little more stressful because he was overly cautious and dug into everything imaginable and scared us silly that we might be dealing with mesolelioma or sarcoma of the lungs…or something, who knows what, growing between two other organs (obviously was an adhesion from my previous surgery and a cesarean to boot…lucky that’s all there was from those two.

Yes, I do believe I deserve better….and though they have marked my chemo as being curative instead of the other two catagories, I feel that when he first met me over a week ago, he probably figured he was dealing with another terminal case which colored his opinions somewhat, but there more to it than that. On Tuesday, he was openly hostile to me in front of his staff…..everything got very quiet except for his angry outbursts.

I will check into the Hope House to see what I can find out. My husband could take me up there, stay with me for the chemo and then maybe go back home to work for a week and a couple days…to gt through the day 1 and day 8 infusions and then come get me to be home for a week and a half. It would be incredible lonely, for both of us….we’re both worried about each other….but it might be the best solution. The day 8 infusion is only the gemcetibine, and not as likely to cause issues. A hotel situation would get very costly and my husband can’t take off that much work right now.

Now later this morning, I am still dealing with what seems to be issues with mild tightness in my chest…and mild breathing issue from the tightness. After two Benadryl capsules in the late wee hours, the itching has subsided on my arms pretty much and my legs are much quieter, though there are still itchy areas, just not all over from foot to mid thigh. I’ve been sitting here in the recliner off and on since 4 a.m. with my feet up…trying to drink more water and keep the fluid from pooling in my legs so much. Every once in a while, I get a very wierd sensation in my legs, kind of like after your foot or hand falls asleep and it starts to tingle as it wakes back up. It’s momentary, but something I’m tracking.

Thanks for the encouragement…it helps give me some resolve to do something proactive. My husband is great, but he hates to see jumping from one place to another….even though he said earlier he would be glad to drive me to Mayo for the chemos. But I reminded him of the last time I didn’t follow my gut instincts……actually two times now. Once, the fibroid tumor that ended in the death of our child when I wanted to change doctors, and the other when I was having diarrhea for most of last year and didn’t go further with it when the colonoscopy didn’t show anything. If a CT would have been done at that time, the tumor probably would have been half the size and with no other tumors present it would have been at most T2a instead of barely T2b.

BTW…I am researching into the idea that an infection caused the diarrhea since it went away for a while twice with an antibiotic, but came back the first time in two months and the 2nd time didn’t come back (but had surgery that removed a good hunk of the left node). My theory is that the infection was from H. Pylori which I have now found out has been studied in Thailand as a probable cause of bile duct cancer. In fact, they said that actually few people infected with the liver fluke parasite go on to develop CC, so there has to be some other lurking cause. Turns out that H. Pylori, contrary to what was previously thought, can indeed live in the bile ducts. I had a blood antibody test that showed I have antibodies to it and thus I may still have it or it had been killed off by some treatment..most likely Vancamiacin which can kill off most everything, but is reserved for only the resistant bugs, like C-Diff of the intestinal tract (which I contracted Feb2012) I’m going to write Mayo doctors about it….copy the studies I’ve been reading and relate my story one more time. After I was diagnosed, I had the “gut” feeling that my cancer was somehow related to that diarrhea, and now I am convinced I am right. One thing this oncologist here has agreed to do, is do a poo test to check for active H. Pylori. I don’t think he is going to find it….but maybe? Stay tuned on that. I realize this isn’t about the chemo problems…but it does take my mind off of them a little bit and when I posted my ideas, I probably put it in a place not as likely to be seen on the boards.

Julie T.