Nerve Damage - CIPN & RIBP

Linda-n3

bak94, my last chemo was Dec 2010 and I am still having the pain & fatigue you describe. MO says it "takes a while" but no real estimate as to what that means.... she says sometimes "a few years" and "sometimes longer" so I suspect I will die before this resolves.... I guess if I live for another 50 years it might get better... do I sound a little pessimistic? Yes, I guess I am right now.... have had a rougher than normal week. I do continue to walk 2 miles at least 3 times a week, and find that does NOT give me more energy, just takes me a day or 2 to recover from it! But I am still trying to find moments of grace, peace, and yes, even joy in each day. Best wishes to you, and feel free to ask any questions or comments here. I continue to do research in this area on my own, and have been asked to speak at the national Toxicology meeting next spring on CIPN from a patient's perspective.

bak94

Thank you Linda! Info is hard to find. Seems many just go on and are fine, like I did the first time. I am 46 years old and don't think I should feel like this. I am on disability, but I would rather work. I know what you mean about the walking, if I go too far or too fast I will pay for it the next day. I don't seem to be building strength or stamina and that is frustrating. You do not sound pessimistic, I think others just want us to be back to normal and sweep all this stuff under the rug and it is just not right, we are in pain! So have you found evidence that chemo can cause permanent pain to the muscles? My muscles are just so tight and so I try to stretch but it hurts so much that I can't go very far. My most comfortable position is laying on my back with arms and legs stretched out, and that feels like a stretch for me.

Oh, I can type, but my handwriting is horrible, my fingers start tingling and going numb to the point my writing is ineligble. I had to take an accounting test where it was hand written, I am surprised they could read what I wrote, as I did pass the test!

sas-schatzi

To all, we all have discussed chemo/ anethesia brain. We now can call it anesthesia/chemo/drug brain. This article is in AARP magazine. It discusses the drug classifications that can cause memory loss. It describes why each drug class can cause memory loss. It gives specific names of drugs. It gives alternative drugs that can be substituted. I would suggest reviewing it with your prescribing doc if you have concerns regarding any of your meds. I also suggest you put it in your favorite places on your computer. Also, printing it off for future referrence if you have a printer. Please, pass this on to other BCO friends, friends etc. sassy

www.aarp.org/health/brain-heal...

Haven't been here much in alongggggg time, but this artcle is a MUST SHARE type with those I care about

Linda-n3

http://www.medscape.com/viewarticle/809520?src=wnl_edit_newsal&uac=116793DK is an article about how the FDA is strengthening its warning about peripheral neuropathy and the fluoroquinolone antibiotics. I have had burning and tingling fingers since taxotere in Oct 2010; had infected seroma in Oct 2011 and got one of the fluoroquinolones, and lost all feeling in my fingers by the second day.



I really hate the burning & tingling at rest, pain with typing. No playing piano or stringed instruments anymore. MO said I would "learn to live with it" and I guess I have. But it has taken so much away from me, and I find it difficult to forgive the fact that the MO failed to recognize it early, reduce or discontinue the drug when it was very clear that I had the neuropathy. She said it would get better. I guess she was right, but better just ain't good enough to get me fully functional.

Cincerely

Hi Linda!

There are so many of us who are suffering the effects of cancer therapy. We need to voice up and make the researchers create kinder-gentler methods of therapies. That, of course would help the future diagnosed. But what about the forgotten and, very often, ignored, "survivors". The statement "learn to live with it" is extremely hurtful, said without compassion, and ignorant coming from a physician!! At My Heart Your Hands, we are creating a documentary about the forgotten survivors. About the many late effect side effects the cancer survivor is facing every day. The life they saved.... our lives... are being lived without the quality of life we had prior to diagnosis. I too, played a string instrument that I loved! The guitar. Now, I cannot even strum a simple chord. If you would be interested, we are planning a google hangout to talk about the many life changing effects from our cancer treatments. It is this evening from 9-10 PM Eastern. If you, or anyone else is interested in joining in, we still have a few spots open. Please send me an email at cindy.graeff@gmail.com.... I'd love to have you join!

Cincerely

Winter/cold weather is the worst time of the year for my nerve damage. Even when its 100 degrees outside, my right arm/hand feels cold to me.... but not as bad as this time of the year. I am currently taking Cymbalta 60 mg once per day, Gabapentin 1200 mg spread out during the day, and Nortripyline 75 mg at bedtime. These drugs take some of the edge off of the constant stinging, but thats it. I still get a lot of breakthrough pain throughout the day and night. Sleep is disturbed with many occurrences. I have more written about this plus several links to publications that are helpful with understanding our nerve damage. Sadly, there is nothing to reverse the damage and elimination of the progression. Stem cell research can bring us all so much once the break through the ceiling.

http://survivingsurvivorship.blogspot.com/2014/01/cancer-survivor-calamities-ribp-ripn_2.html?showComment=1388766165113#c8532585343534244503

sas-schatzi

Cindy, read your blog. Your Blog is great for the information. What the 4 R's have done to you and Linda are criminal. I saw Kira responded. She such a source here for LE.

Question: How do you respond now when someone asks you about whether they should take the radiation treatment that the doc has recommended in their treatment plan?

I'm a retired nurse. Over the years have dealt with mostly GI/GU late affects of radiation. The hospitals in my locale  for last 25 years are non-teaching community hospitals. Serious problems go to the larger centers. My problem is I'm not a doc. The doc is making the treatment plan based on national cancer standards of care. I have always considered radiation awful b/c of the patients that I have had that have had long term terrible consequences. But I have been reticent to tell newbies to  BC, the treatment may be worse than the cure. Hence my question above.

sas-schatzi

Bump

Cincerely

Hi sas-schatzi - my apologies for not responding. For some reason gmail decided my notifications from this post was spam.

To answer your question -

I would say:

As uniquely individual as we all are in general, we are as unique in the way we may respond to the harshness of cancer therapy. The desired effect of cancer therapies, both chemo and rads, is of course, to live. Lengthen the life we have. We do whatever it takes.

However... Understand what possible changes may occur. Collateral damage exists with cancer therapies. There will be changes to they quality of your life. No doubt about it.

Discuss the potential immediate, and late, side effects of both, the chemo and radiation treatment plans. Every person reacts differently to the collateral damage of both therapies.

The incredible harshness of the cancer treatment side effects should/must be monitored consistently by the medical team during and following cancer therapy. The enhancements made to radiation, by using more accurate beams, is encouraging. Less collateral damage is always good!

Having the knowledge of what may happen immediately, or as the months and years pass by, is invaluable to each of us.

Unfortunately, the average primary care doctor team, may not be aware of the side effects and how they may behave differently than those who have not had cancer.

Which is why we need to be our own best advocate.

Make every decision with eyes wide open. Make every medical decision WITH your doctors - not just BY your doctors. You and your doctor are a life saving team.

--------------------------------------------------------------------------------------

By the way - cancer never fully leaves us.... Which is the harshest of collateral damage we have.... Forever looking over our shoulder.... Waiting on the next shoe to drop.... Sucks.

Love and hugs always,

Cindy

sas-schatzi

Cindy, Thanks, I generally say the same thing. Though not as eloquently. L&H's sassy

sas-schatzi

bump

Cincerely

Bump?  Who's getting a bump?

sas-schatzi

Cindy, the thread is getting bumped. It's a way to get the topic in the "active topics" list. I have had this thread in my FAVS for a very long time, but I didn't bump it. I have several threads of mine and others that I watch and bump to keep them active. Otherwise they fall into oblivion. This subject is too important to let it fall away into the mainframe cobwebs. 

We use the word ----Bump------means I haven't anything to say right now , but want it in the Actives

We --you and I,  both know that the seriousness of complications are not made known to newbies. I think with your addition of your blog that gives so much information that is "eveidence based research", it is important for newbies to have access to the thread.

So Bump sassy

Cincerely

Oh.... yes!!  Bump away my friend!!

sas-schatzi

bump

sas-schatzi

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sas-schatzi

Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy

Bluebird144…NJJoined: Apr 2013Posts: 393

13 hours agoBluebird144 wrote:

Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

Knitted knockers website:

http://www.knittedknockers.info/

Fall down seven times, stand up eight.

Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)

sas-schatzi

Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made

Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.

I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.

Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.

http://community.breastcancer.org/forum/73/topic/7...

sas-schatzi

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sas-schatzi

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sas-schatzi

BUMP, useful to read Cicerely's posts and blog to help in formulating questions and opinions re rads

sas-schatzi

Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you .

The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things   Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.

sas-schatzi

Bump

sas-schatzi

moving down Cincerely's message from Jan. Her Blog is a wealth of information sassy

Jan  5, 2014 02:35PM Cincerely wrote:

Winter/cold weather is the worst time of the year for my nerve damage.  Even when its 100 degrees outside, my right arm/hand feels cold to me.... but not as bad as this time of the year.  I am currently taking Cymbalta 60 mg once per day, Gabapentin 1200 mg spread out during the day, and Nortripyline 75 mg at bedtime.  These drugs take some of the edge off of the constant stinging, but thats it.  I still get a lot of breakthrough pain throughout the day and night.  Sleep is disturbed with many occurrences. I have more written about this plus several links to publications that are helpful with understanding our nerve damage.  Sadly, there is nothing to reverse the damage and elimination of the progression.  Stem cell research can bring us all so much once the break through the ceiling.

http://survivingsurvivorship.blogspot.com/2014/01/cancer-survivor-calamities-ribp-ripn_2.html?showComment=1388766165113#c8532585343534244503

 

sas-schatzi

see above bump;) sassy

sas-schatzi

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sas-schatzi

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sas-schatzi

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6cats

Hi all... I am about a year Post Final Chemo... and still suffer from peripheral neuropathy. It appears to be worsening. I thought it was supposed to improved. Any advice would be appreciated.

6cats

sas-schatzi

6cats, suggest you contact Cindy by PM or link to her blog. I watch this thread to bump it. Not knowledgeable about CIPN_RIBP Cindy is.

http://survivingsurvivorship.blogspot.com/2014/01/cancer-survivor-calamities-ribp-ripn_2.html?showComment=1388766165113#c8532585343534244503