Nerve Damage - CIPN & RIBP

PS - I am going to ask about the cream.

Cindy, I am sorry to hear of your loss.  I can understand why you would be so concerned for your father.  (For some reason, it seems that women are better able to deal with loss than men are. I think that is one of the reasons I try to keep on going - I worry about what would happen to my DH - isn't that silly?)

Karen, I just ran across some news story about a genetic link to who gets CIPN - nothing proven yet, and I don't have the citation for you, but I am wondering about that because of you and your mom.  I will dig a little more.

Peace to you all tonight, Linda

New thread on social security questions answered by a lawyer whose wife has BC. Knows his stuff------posting on a bunch of threads---------go to financial forum

 Can't make link work without trouble, not up for it.

Heyup Cincerely,

How are you feelin today?

Have been sat here readin through your posts, i noticed you have a facebook account, which i tried to get into but could not find.  I have many a useful link via fb, i think might just interest you.

I was diagnosed with breast cancer 22.03.11, operation needed, and went well. Aftercare is x6 rounds of E&C chemo, the radiation and her pills.

I had all the usual apts, with all the usual specialist doctors about chemo, and what i was likely to expect, with wonderful statistics on severe long term side effects. It sounded like i was in good hands, with great prospects. So have blindly followed all recomendations given. Im now on round x2 of chemo, and goin through hell.

After a conversation with a dear friend of mine, i was shocked at her reaction at my compliance with the medical profession treatment plan for this disease. She gave me a few links, and sites to start investigating everything, from cancer itself, to the chemo, radiation, statistics, doctors, charities, research, pharma companies, FDA, and the people who seem to run the cancer trillion dollar empire, alternative therapies, proclaimed cures etc, etc.

I found that i was shocked at the statistics given to me in the doctors office, when i first had my pep talk on chemo sounded so great, but wanted to know how these figures were generated and arrived at. The figures given in that first apt are not true, statistical figures, but merely 'cooked' to make them look good. for eg... One way to cook the figure... when a patient dies of 'septis' which of course is caused when havin had chemo, results in little or no immune system, the death certificate will read as cause 'septis' ... and not 'cancer-septis'.  Another way to cook the figure is upon death, the dose of chemo, or radiation might be so high or uncopable to the patient that a heart attack will ensue. Upon autopsy, the MD will be excited and eager to pass on info that the patient appears to be cancer free, so cause of death ' heart failure', which in real time should say, cause of death ' chemo induced heart failure' or ' cancer related heart failure'  just 2 ways the figures are cooked, with many more on line to find.

I next researched side effects, and am horrified to find that chemotherapy can increase your chances of 5-6 life threatenin other bodily cancers in the future. WHAT!!!! But have been told by doctors and on here, ' The risk is very small', well i say look into that 'small risk' and find out how they arrive at the figures to justify sayin 'small risk'. Get real, we are talking about cancer here arent we? So am i trading this recent breast cancer off for a later more horrifying one?.

Who makes these decissions on medical therapies? Why has no cure been found, with all the trillions given from charities? why have other doctors claims of cure (which are many) so dismissed as quacks so readily, without research?

I truly believe all the above is down to money, power n who has it.

Mr Rockefella, head of chemistry co in early 1900's, branches off in2 medical education. Later to start what is now FDA, who are just a coverup for the original 'chemisrty company'.  Mr Rockefella is very rich, then owning all chemisrty, n industrial corps. He 'donates' grants to american medical schools, who will continue to recieve grants providin Rockefella has a say in what gets taught in med school. Compliance = Big grants.  He now controls the chem industry along with the med education system, he then breaks out into Pharma companies, making these medicines, teaching them in schools, gettin them passed thru FDA via politicians, check and mate to the people.

So in a nut shell, he makes the drugs, teaches new docs about his drugs, gets them passed thru fda, then sells them!! BOOM check mate, one very powerful n rich man.

Other cures?!!  I believe that there ARE cures for cancer out there. There are too many noble prize winners out there all doctors, that are just ousted as quacks. Good enough for that noble prize, but not good enough for a cancer cure, eh? Well that too makes sense when you research it. As these doctors come forward with there claim to cure cancer, with years of research, and patients details, even goin to court to be heard, ultimately, the drug or treatment has to be passed, and guess who passes it, FDA!!!! if the doctor will not subscribe to FDA RULES, then the FDA will not pass it. This generally means that the cure cannot be 'patented', meaning, purely made and marketed by Rockefella. One example of this... 'Hemp oil' .. many patients in Canada, and all over claim this oil for its cancer healin agents, in so many different ways, from internal cancer to skin cancer to pain relief. One medical establishment in San Francisco allowed to prescribe for medical issues. Why oh why dont Rockefella, FDA look into this and do actual viable studies on this? Because they cant 'patent' it. Think, if hemp oil really was the all round do-gooder, Anyone can grow it, and harvest it, therefor no need for FDA,Big pharma, Rockefella etc, etc no profit in other words!!. So a good way to oust a doctor and theory , call him a 'QUACK' even though that doctor is a noble prize winner, some many times over!!!!!!

Whilst we are 'sheeple' and following the chemo road, we need these empires and all the medication THEY, make and conveniently SELL to us for the side effects,  funny that eh, all the meds are in place for the side effects.

A cure is not financially acceptable at the moment. You have med schools training specialist doctors, nurses, The company lookin after the 'bio chemical drugs' delivery drivers, hospital staff, pharma companies, etc etc, what will happen to all these people and their jobs if a cure is found, and not to forget Rockefella, FDA etc, etc what will happen to there self made trillion dollar cancer empire.

i have spoken to various people and got different responses family directed me here to this forum. I have yet to find a real time for and against discussion about anything. This site is very good for the average joe public, who need support from like people, or positive lifts in mental mood occassionaly. I personally need niether, i wanted a good informative sight where i could arrive at my decissions myself. I believe this site and all like it, that are enforced by the med profession, firstly tell you what they were told, by someone who learned it in a school bein told what to learn, and read to say the right propogander for the right ends, to get people on chemo!!

Im horrified to hear of your sufferins now, and like you think we all need a voice, and more real, true information to come to our decissions, no more propogander!! i think for now we have to go find this information ourselves, investigate, educate, circulate,

Hope you find some answers, can you pm me the fb page and i can send you some informative links and pages.

Best of luck to you, and above all, do not be quiet, keep doin what your doin, keep askin, keep in the middle of it all, take your life in your hands.

health n happiness to you x

Cindy, so sorry about the new battle scar! Ugh! Hang in there - this is at least probably one of the most treatable of cancers. Glad to hear the other rash is better with the new cream.

Hugs, Linda

Cindy, thinking of you today.  Hoping for the best with your cardiac cath.  Did you have adriamycin?

Cindy, I was terrified of the potential cardiac effects of adriamycin, but got neuropathy with taxotere, and finished up my last chemo round with adriamycin after 2 cardiologists and my MO said I would not have any problems with the single low dose.  My cardiac enzymes went up with just the one dose, and now they tell me they can monitor me for the rest of my life "just in case" and that they can "manage" symptoms if I have them..... just like they told me neuropathy was not likely with the taxotere and they could "manage" that if it happened... so far, NOT!!!! (well, at least not to my satisfaction so that I can function fully).  I am offering special positive vibes and prayers for you.  How soon do  you travel?  Sounds like a great trip coming  up!

Lawgirl, I tried neurontin (gabapentin) beginning after #2, but got no relief.  Increased dosage over next few months, neuropathy progressed, and all I got were more SEs from the Neurontin.  I was also very healthy and active prior to chemo; my tumor was a bit smaller than yours, had 2 positive nodes, so was only stage IIb, but also grade 3 so chemo was probably better for the more aggressive tumor stage, but my MO said that 4 T/C were as good as 6 according to the research presented at the San Antonio conference last fall.  I was only able to do 3 T/C, switched to A/C for the last one.  The nodes disappeared clinically and on PET scan (I refused axillary node surgery - was terrified of damaging axillary nerves on dominant side, same reason I refused rads, and am quite happy with my decision as the CIPN is bad enough).  My main problems are jaw and teeth are so painful I cannot smile, feel like my face is wooden, without emotion, hard to chew food, teeth then tingle/mouth feels like it is on fire.  Same as fingers when I type or do any paper work or anything that uses hands for more than a minute. I'm not sure things get worse with humidity, but they DO get worse with fatigue and anxiety.  Have tried other treatments, no improvement, only more SEs. Am discouraged (again).  Wish I could give you more encouragement.  We can just hope things get better with time, and support each other with prayers and well wishes, hopefully a bit of humor along the way (I hope to find my sense of humor again, maybe tomorrow...it seems to pop in and out these days).

Lawgirl, that is interesting that you are feeling a "very heavy arm."  That is exactly what I experienced about a month or so after last chemo, could hardly move them.  Very odd feeling.  Still comes back, mild pain in the muscles with the heaviness.  Just very odd and difficult to describe to the various docs.  Am sure they think I am crazy (and sometimes, I am beginning to wonder if I really AM!)  Good luck on the meds!

Cindy, thanks again for filling us in on your visit.

Don't know if I posted here or another thread, but I am working with a toxicologist who prescribed a topical cream for hands.  Not terribly effective for other areas affected by the neuropathy, but after using it for a month, then not using it for a month, I figured out that it helped the finger tingling and severe cold sensitivity while I was on it.  And I didn't have effects like drowsiness, dry mouth, jitteriness, etc. that the oral meds gave me.  So I am back on it starting tomorrow.  Any relief will be welcome!