Medical Forum / Diseases and Disorders / Breast Cancer / March 2004
Update on my wife
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Gene Fuller - 28 Mar 2004 03:51 GMT I think I advised the group a few weeks ago that my wife, Dorothy, had been diagnosed with breast cancer. She had the lump removed, and it contained cancer cells. It measured 1.8 cm. They removed 20 lymph nodes and three contained cancer cells, with one penetrating the lymph node wall. The oncologist recommended 4 treatments of one chemical mix followed by 4 of another then 30 radiation treatments and five years of hormonal suppressant treatment.
She has now had a bone scan, which was negative, a MUGA scan which indicated her heart is in good shape, and chest X-rays which were negative _but_ with one indeterminate shadow. So she had a CAT scan of that yesterday. The oncologist assured us he thought it was nothing, but best to find out.
A friend had told us about Protocel, and in the initial enthusiasm I ordered a supply. We have had it on the shelf for a couple or three weeks and she decided today to start taking it. I hope she has not decided not to go ahead with the chemo. We are all afraid of the unknown, and of course this is for her one of the worst unknowns she has faced, with conflicting claims all over the place.
Has anyone here any first hand experience with Protocel? Has anyone here any really good experience with chemo and/or radiation?
Thanks
Gene
J - 28 Mar 2004 04:43 GMT > I think I advised the group a few weeks ago that my wife, Dorothy, had been > diagnosed with breast cancer. She had the lump removed, and it contained [quoted text clipped - 18 lines] > Has anyone here any first hand experience with Protocel? Has anyone here any > really good experience with chemo and/or radiation? Here's info about Cancell (aka Entelev, Cantron, Sheridans formula, JS-114, JS-101, 126-F, Jims Juice, Quantrol, Protocel) http://cis.nci.nih.gov/fact/9_13.htm http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=491 HTH J
Gene Fuller - 28 Mar 2004 22:58 GMT Thank you for the links. They were informative and agreed with what I had read elsewhere earlier.
I am still interested in any first hand experiences that any one on this ng may have had with this product.
Gene
> > I think I advised the group a few weeks ago that my wife, Dorothy, had been > > diagnosed with breast cancer. She had the lump removed, and it contained [quoted text clipped - 20 lines] > > Here's info about Cancell (aka Entelev, Cantron, Sheridan's formula, JS-114,
> JS-101, 126-F, Jim's Juice, Quantrol, Protocel) > http://cis.nci.nih.gov/fact/9_13.htm > http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=491 > HTH > J Anthony - 28 Mar 2004 12:30 GMT > A friend had told us about Protocel, and in the initial enthusiasm I ordered > a supply. We have had it on the shelf for a couple or three weeks and she [quoted text clipped - 5 lines] > Has anyone here any first hand experience with Protocel? Has anyone here any > really good experience with chemo and/or radiation? I certainly sympathise with you and your wife as, I assume, do most people here, being in the same boat. We each have to find our own ways to cope and for some alternative medicine seems to provide comfort although, as you can see from the sites posted by J, there are no respectable studies to suggest that Protocel, or whatever else it might be called, does any good. From my personal observation I would say that the down sides of these therapies are that they can get in the way of proven treatments, that you can waste a lot of money on them, that they may do harm and that people can go on taking one after another when realistically all hope is gone and it's time to come to terms with the approach of the end. When you ask about experience with chemo and radiation there are endless statistics available which show mortality rates of different types of cancer at different stages and given different treatments; the medical and pharmo communities try continually to refine existing treatments and come up with new ones. Trouble is, there are no sure fire treatments and an individual is not a statistic. My advice to you and your wife is to place your wife's treatment in the hands of the very best medical team you can find and to do enough homework on the subject so as to be able to discuss her condition and treatment with that team and contribute to the decisions to be made.
Gene Fuller - 28 Mar 2004 23:03 GMT Snip my report
> I certainly sympathise with you and your wife as, I assume, do most people > here, being in the same boat. We each have to find our own ways to cope and [quoted text clipped - 16 lines] > on the subject so as to be able to discuss her condition and treatment with > that team and contribute to the decisions to be made. Thank you. I certainly agree. However, we have seen a local oncologist in a local community hospital who totally impresses me. I hesitate to go to a large city hospital such as Barnes-Jewish in St. Louis or even M.D. Andersen since I currently have confidence in the local man. I have been warned against the Cancer Centers of America.
We either must rely on the trained physicians we have or seek others, or simply turn our back on the profession, it seems.
mosherm@nsnet.pns.ca - 28 Mar 2004 14:21 GMT Has anyone here any
>really good experience with chemo and/or radiation? > >Thanks > >Gene Hello Gene,
This is my experience.
I found radiation an absolute piece of cake. I had to drive 90 miles a day to the nearest clinic, but I had absolutely no problem with it. And the comradery of the people at the clinic was such a blessing I used to go early and stay late.
Chemo was all right. Either the chemo or the anti-nausea drug Zofran made me sleepy but I was never sick. After the first treatment I was so sure I was going to be sick I was making myself gag, but that never happened again. I napped a lot but I know some people who continued working the whole time. My taste buds changed a bit - I craved candy and ice cream and couldn't abide my usual coffee, but I'm back to normal now.
Pre-chemo I was a very poor and restless sleeper, waking up at the smallest sound, and somehow now I go to sleep easily and sleep all night, so in retrospect I'm grateful for the chemo.
I'm taking Arimidex for five years and after one year I haven't had any problems at all from it other than a few very mild hot flashes.
Hugs to your wife,
Marilyn
Gene Fuller - 28 Mar 2004 23:05 GMT > Has anyone here any > >really good experience with chemo and/or radiation? [quoted text clipped - 30 lines] > > Marilyn Thank you, Marilyn. That may be the most hopeful news so far.
Gene
Kaye301 - 29 Mar 2004 07:47 GMT Gene wrote: << Has anyone here any first hand experience with Protocel? Has anyone here any really good experience with chemo and/or radiation?
I don't know anything about Protocel so can't help you there but can share experiences about chemo and rads. I won't go into the particulars of my situation in this post other than to say that I was dx'd with 3 types of aggressive breast cancers in 3/01. I had a bilateral mastectomy followed by chemo (4 AC), radiation (5 weeks), more chemo (2 Taxol and 2 Taxotere) with a year of Herceptin, then Arimidex, and then a complete hysterectomy and salpingo--oopherectomy. I was dx'd in 3/01. Chemo was much easier than anticipated and from what I remembered my mom having. (I was dx'd at same age as she--50). The new anti-nausea meds make it much more bearable. I had 3 relatively easy pregnancies and found chemo easier than being pregnant. I had very little effect from the radiation--other than the inconvenience of going daily (except for weekends). We left for a cruise 2 days after I finished radiation treatment. If you want any more re. specifics--just ask and if I don't have the info I am sure many others here would have that info. Take care and wishing your wife all the best re treatment, etc.
Gene Fuller - 29 Mar 2004 19:28 GMT Thank you, Kaye. I appreciate this information. I hope it may ease my wife's mind about chemo. She has started the Protocel, and I do not know what her current thinking is about going ahead with the standard Chemo. She changes from day to day, almost, which I can understand, but I have no faith in the Protocel. Actually, I need what you gave me, information to help understand the effects and results of standard therapy, but also anything really solid about experience with Protocel.
Gene
> Gene wrote: << Has anyone here any first hand experience with Protocel? Has > anyone here any [quoted text clipped - 17 lines] > would have that info. Take care and wishing your wife all the best re > treatment, etc. A. P. Thorsen - 29 Mar 2004 18:50 GMT > Has anyone here any > really good experience with chemo and/or radiation? Hello, Gene --
I hope it's not out of turn to answer in these terms: I had a worse-than-typical experience with chemo . . . and I would still do it again in a heartbeat. It was just not that bad. From reading popular magazines and such on the subject, I would've imagined it would be the worst thing I had every gone through, and it wasn't. Rotten hobby, but manageable.
Radiation was easy. The hardest part was the logistics of doing it every day for 6 weeks. I got slight burning, not even as severe as my worst-ever sunburn, and felt somewhat fatigued but not debilitatingly so. Worked full time & kept up with daily responsibilities (I'm single/widowed & live alone) throughout.
I'm sorry I can't help with the other part of your question.
Take care, and well-wishes to your wife!
Ann T. Remove 'dontsendspam' from address to reply by email
Gene Fuller - 29 Mar 2004 19:30 GMT Thanks Ann, that is good information to have.
Gene
> > Has anyone here any > > really good experience with chemo and/or radiation? [quoted text clipped - 20 lines] > Ann T. > Remove 'dontsendspam' from address to reply by email Chris - 29 Mar 2004 22:20 GMT A really good experience with chemo and radiation is a tough one. Yet, I will say that I have had 4 different chemotherapy treatment courses over the years and I have never had a really bad experience. When I first started this I figured I would feel terrible, but at least it would be a quick easy way to lose some weight. Well, in fact, not true to either! The big issue with chemo is to manage the fatigue. It can be sneaky. At my worst, I could handle a day with my son who was either a toddler or now a preschooler, but was just beat by his bedtime.
I hope your wife goes ahead with treatment. Certainly the emotional part of getting diagnosed is worse than anything.
I am sorry that I have know nothing about Protocel. What is it?
Chris
> I think I advised the group a few weeks ago that my wife, Dorothy, had been > diagnosed with breast cancer. She had the lump removed, and it contained [quoted text clipped - 22 lines] > > Gene Gene Fuller - 29 Mar 2004 23:12 GMT I don't know much about Protocel, other than that it sounds like it promises great things, but I have seen no real basis for the claims. I have read a lot about it on the net, but all seems to come from those with a proprietary interest. That is why I am wondering if anyone here who has undergone conventional treatments had also had any experience, either before, after or along with Protocel or other so called alternative therapies.
Thanks.
Gene
> A really good experience with chemo and radiation is a tough one. Yet, I > will say that I have had 4 different chemotherapy treatment courses over [quoted text clipped - 38 lines] > > > > Gene Kaye301 - 30 Mar 2004 16:22 GMT Gene, as I mentioned before I have not had Protocel, but if you/your wife are/is interested in things that will help other treatments work better check out the research on Celebrex and chemotherapy/radiation, and breast cancer.
Gene Fuller - 29 Mar 2004 23:13 GMT > A really good experience with chemo and radiation is a tough one. Yet, I > will say that I have had 4 different chemotherapy treatment courses over [quoted text clipped - 38 lines] > > > > Gene
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