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Topic: Pain and Other Things

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 30, 2015 02:34PM - edited Apr 21, 2016 06:45PM by sas-schatzi

sas-schatzi wrote:

Hi I've been on BCO a long time. Nurse 40 years, lot's of varied nursing experience. If I don't have an answer when someone asks I can find it. Pain is a pretty sore interest. I will also, be consolidating old posts. Easier than rewriting new ones when they're good old ones. I'm a strong believer in Evidence Based Research. Anecdotal information does have it's use, but in the framework of accepted Standards of Care.

Must admit though slowing down, not as prolific as I once was.

As always, I review and revise at will without defining why, unless saying why is intergal to the work. Their are folks that can't deal with that and have overtly or covertly criticized me for it. The overt criticism I see as an opportunity to discuss. The covert "get a life".

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jul 28, 2017 01:40PM - edited Jul 28, 2017 01:43PM by sas-schatzi

Other Thing all small item for the prevention of Postop illeus

Consider chewlng gum to prevent post op ilieus(((((((((((((((hahahaha)has science behind it

http://www.medscape.com/viewarticle/807022_1


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 1, 2017 06:39PM sas-schatzi wrote:

ump

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 1, 2017 06:54PM marijen wrote:

Keyboard still not working?

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Aug 1, 2017 11:19PM sas-schatzi wrote:

ready to throw it in the pool................worse than you can imagine

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 1, 2017 11:24PM marijen wrote:

Sorry to hear that, save your information first. Buy yourself a brand new one

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Aug 2, 2017 01:06AM sas-schatzi wrote:

Mari--------------recome_datios?

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 2, 2017 02:21AM marijen wrote:

Tomorrow I'll find out what my son bought. He's an IT guy

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Oct 4, 2017 10:20AM - edited Oct 4, 2017 11:31AM by sas-schatzi

Other Thing HPV vaccine controversy: In discussion on another thread HPV vaccination came up. The vaccine doesn't apply to us directly b/c we are beyond the time it would be received. It does, however, affect our children, friends children's.

We here have a lot of experience with drugs. We ae fully aware that all drugs have consequence's. Untoward or side effects can be as debilitating as the treatment. Some of our drugs give us life time problems i.e. neuropathy.

When HPV vaccine was introduce, it was one of the first drugs that was Fast Tracked through the FDA process. It was tested on less than 1000 people. Again here many are aware of the FDA process and know that is very unusual. HPV vaccine did not go through the rigorous trialing that is applied to other vaccines.

There is much documentation as to problems with the vaccine. I am transfer two posts from two members. The first is by Bluebird. She is an author and humorist in her real life. She put together a web page that discusses the impact of the HPV vaccine. The second post is by FeelingFeline that perfectly addresses the concerns of a mother in considering whether to allow her daughter(son) to receive the vaccine.

1. Bluebird-DE's blog " Women's Fiction: Myths, Dense Observations and The Lies We've Been Told". Written in 2013, http://www.womens-fiction.com/lies/hpv-vaccine-ris...

2. FeelingFeline here(Ireland) the Gardasil vaccine is being administered in schools under free public health. It is voluntary. It is also very controversial. For example there is a well respected Irish public figure who founded a charity for offering home nursing care and respite to parents of babies and young children with brain damage. He is convinced that his teenage daughter's health was seriously damaged as a result of the vaccine. Because of the ongoing controversy over whether the vaccine is even needed, plus SE's experienced by some who have had it, the public take up has fallen to around 50%. Vaccines work on a "herd" basis - ie if the vast majority of the herd (population) isn't vaccinated the effectiveness is diminished. Because of the drop in uptake our Health Dept is engaged in a major publicity campaign to promote the vaccine. The vaccine is primarily targeted at young girls (although there is talk of extending that to young boys), however anyone can opt to get it privately. Therefore to say no to it now does not disbarr my DD from choosing to be vaccinated at a later stage when she is an adult.My personal choice while I am responsible for her is No. My Mum often says that my generation has it a lot harder as parents than hers did. In particular there are so many more choices where it seems "damned if you do/damned if you don't". All you can do is make your best decision based on the information available to you at a particular time. However we have an onslaught of information and some of it pushed by algorithms concocted by God knows who, rather than coming from people you know and trust. I am not giving permission for her to have the vaccine but that does not mean that I know that to be the right decision, simply that is my best decision at this time.

Post still being constructed posting in pieces to prevent losing to the computer netherworld

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 5, 2017 10:07AM BosnianHusband wrote:

Hello everyone,


My wife (33 yrs) has TNBC. She was on TAC x6 in 2015, AC x4 + Taxol x12 in 2016, and on Carboplatin+Gemzar x6 in 2017.

At the moment, she is on Olaparib (Lynparza).

Ever since she started to use Olaparib, she has constant and very severe back pain. The pain is changing location, it moves from lower back upwards, then comes back, sometimes it gets in her right hip, but for 30 days it never went away. Most of the nights she sleeps only for about an hour, maybe even less.


She has taken several different painkillers, sleeping pills or tranqulizers - Zaracet (Tramadol), Aspirin, Voltaren (Diclofenac), Diazepam (Valium), nothing helps.

She also had a CT scan of her back just to see that there was no mets, and the scan was clear.

So we do not know where the pain is coming from. Is it from her Neulasta shots that she took 2 months ago when she needed to boost her WBC, or is this side effect from Olaparib.

Anyone else has experience with this severe back pain?

She cannot walk upright, she cannot lay normally, she is constantly bent and trying to find the position to feel less pain.

We are starting to wonder does this ever go away...

She will stop taking Olaparib for 3 days on advice of her doctor, so we can see if this is from Olaparib or it is residual from the past.


Any experience or ideas would be welcome.

Thank you.


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Oct 10, 2017 04:52PM sas-schatzi wrote:

So sorry Bosian, I wasn't watching.

How long has your wife been on Tramadol? Very specific reason for asking.

From your post it sounds like this severe pain started with Olaparib. I know nothing of the drug, I will try to take a look at it tomorrow (WED 10/11). You mention she was going to take a three day break from the drug. Which since it was the 5th that you posted, the break may be underway. If so please, post what the response.

I'm going to send you a PM. :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 04:13PM BosnianHusband wrote:

Just to follow up on this.

She wasn't taking Tramadol for long.

Now the things are much clearer for us, so let me give you all an advice.


She was off Olaparib for 5 days and it didnt work. The pain was constant. So she resumed with it.

We had CT scan yesterday and got the results today. It shows that her condition is a lot worse than on the previous PET scan which she had little more than two months ago. Which means that even though it was suggested by Molecular Tumor Profile from Caris that Olaparib was therapy with potential benefit - it was not. Now we have to figure out what to do next in the morning with the doctor. She will probably go back to Chemo - Carboplatin + Gemzar.

Important learning and lesson - constant pain means something. If the blood test results are OK, or inconclusive at least, and the patient is feeling pain - it is a reason to be concerned and to investigate where the pain is coming from. CT scan from her spine was OK, 15 days ago, but this CT of her abdomen was not and showed a lot. It is unclear why she had only back pain, and not in abdomen, stomach, anything inside. But I say it again, if the pain is constant, it has to be investigated because it can be sign of something important. Doesn't have to be, but you have to be certain and that is my advice to everyone here. Tests and scans, as much as hard or expensive they are, should be done frequently, just to make sure that you are moving in the right direction. Specially if you have some signs or symptoms.


Good luck to everyone reading this or having any type of discomfort, trouble or anything. We all know how hard this all is, but never give up, always look ahead, be smart and do everything that is up to you. The rest is in God's hands.

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Oct 11, 2017 06:07PM - edited Oct 11, 2017 06:10PM by sas-schatzi

Bosian, Olaparib is known to cause Muscoloskeletal (muscles and bones)pain 25-32 % of patients, and back pain in 25 % of patients. Effectively 1:4.

Add to that Voltaren, Acetominophen, diazepam, and Tramadol effectiveness is decreased because of the way it's metabolized in the liver. The are all metabolized through 3A4. Regretfully, Oxycodone is metabolized through 3A4

My thought here is to locate a pain drug that isn't metabolized through 3A4.

I found a wonderful site called Drug Bank. It's from Canada. It's much more extensive that the drug circular. Includes a lot regard drug trials. Plus, unique to this site is the drug interaction info. It has an a-z list of the most commonly prescribed drugs and the interaction between the two.

I have a similar ability with my YouScript drug checker, but I pay 24 $ a year for this service.

Drug Bank is free. Previously, I recommended the US dailymed.org as a drug checker site. But the direct ability to check interactions is a very important feature of Drug Bank

When you look at the link to that particular section you can check to see if any of her other drugs interact with Olaparib. With patience you can check all her drugs.

I was typing and saving and noticed that you had posted. I will check your post now

As a final thought if you can afford YouScript it's a marvelous source. It's pretty near perfect if the patients genetics are done. I did have mine done. Out of 6 of the most common enzyme paths 2D6, 2C9, 2C19, 3A4, 3A5, VROCKI, I have three abnormal. 50% of all drugs pass through 3A4 & 3A5, VROCKI is relevant to Coumadin therapy.

https://www.drugbank.ca/drugs/DB09074


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 06:26PM - edited Oct 11, 2017 06:28PM by sas-schatzi

Bosnian. I do agree pain needs to be investigated. But you are leaping to some conclusions that do not equate. Your logic follows if her the tumor growth was in retroperitoneal space. This is the area behind the abdomen. Tumor growth in this area can impinge on spinal nerves directly.

Tumor growth in the area of the Abdomen wouldn't necessarily present as back pain. Unless the tumor growth was significantly large enough to displace and put pressure to the rear with impingement on the spinal nerves.

The question I would direct to the doc and radiologist is: How much of the abdomen could be seen in the previous CT. It should be evident They may have been only reporting on the spine, but the abdomen would have been visible. Pull up a youtube example of spine CT and then and abdominal CT and you will see what I mean.

So, either the tumors were present or they grew very rapidly.

One last question: Why was Olaparib chosen? It's indicated for ovarian, fallopian, and abdominal cancer or those that have received at least three courses of previous of other chemotherapeutic agents. There is no indication for use with breast cancer. What was the doc rationale for use of this drug?

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 06:41PM sas-schatzi wrote:

Bosnian I have another thought. The fact that muscloskeletal pain with back pain being directly & separately listed in the untoward reactions, add that to decreased effectiveness of all the pain meds she had used b/c of liver metabolism. Her pain could have been from the direct effect of the drug and reduced med effectiveness. B/c the pain was so severe further examination was done. The abdominal findings could be what is referred to as an incidental finding unrelated to her pain.

Incidental findings mean " Oh we found something we weren't looking for".

Say she had abdominal pain and then you found tumors. That would be a direct finding.

Let me know if you understand this. It can be a foreign thought at first.

Good Luck with finding a treatment

Also, whatever treatment is chosen remember to ask about how they are all going to be metabolized.

Don't be surprised if their eyes glaze over. This should be checked for all patient, all the time. It isn't

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 07:29PM BosnianHusband wrote:

I will first respond to your question - why was Olaparib taken? We sent her tumor tissue samples to Caris Life Sciences, Phoenix. Payed for the analysis that they do. Their report said that Carboplatin and Olaparib have potential benefit as therapies. Since she was already on Carboplatin+Gemzar, we saw that report was correct, she was being better with Carboplatin. Since she is BRCA1 positive, and PARP inhibitors such as Olaparib work well in those cases, plus, it was suggested in the Caris report, then Olaparib was the next logical step. We figured that by this time it would wipe out any remainings.

But, to the contrary, the situation is now worse then before Olaparib, much worse. We see that from CT abdomen scan and compare it to the PET scan from July. That scan also shows some activity in her spine, which was not there 15 days ago. But the CT scan was different then, weaker machine, without contrast. Many factors.

So, why Olaparib did not work, we are very much confused and disappointed.

Now, are you saying that Olaparib effectiveness was lowered because of Pain meds for back that she was taking? Olaparib is also metabolized through CYP3A4?

Also, even though the tumors were not visible in spine CT, she did have back pain then and now. Something was causing it then. Now we see the tumors in her abdomen, but the pain was there in her back also 15 days ago, when apparently there was nothing in her spine.

Regarding that incidental finding, I see your point. But that same pain was there few months ago, before Carboplatin. After 2nd cycle of Carbo, it disappeared. Which could mean that the therapy worked. And she did not have Olaparib then, with back pain as side effect. Somehow, probably, but I dont know how, symptom of her tumor goes through her back and resembles in back pain.


Finally, say, tomorrow she goes back to Carboplatin+Gemzar. If I ask how the drugs will be metabolized, and get an answer, that helps me how? Just to know which meds she can use for side effects, or? Did not fully understood that "metabolized through certain enzyms" part, except that it can interfere with pain meds. Hopefully it cannot lower impact of chemo drugs.

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Oct 11, 2017 09:35PM sas-schatzi wrote:

Bosnian. Sorry again you posted two hours ago and now I know from your PM you are on deadline for 8am. I will first look at drug bank and the pain meds.

Just incase you don't know the first step of a PET scan is a CT scan. Then the injection then a finish scan.

I'll be back

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 09:37PM - edited Oct 11, 2017 10:46PM by sas-schatzi


To anyone reading this, in my search from above I came across Drug Bank. It's a good source, but it isn't easy to navigate. Still worth a look

https://www.drugbank.ca/

INTRODUCTION FROM IT'S HOMEPAGE:

"

Logo pink

The DrugBank database is a unique bioinformatics and cheminformatics resource that combines detailed drug data with comprehensive drug target information.

The latest release of DrugBank (version 5.0.9, released 2017-10-02) contains 10,500 drug entries including 1,737 approved small molecule drugs, 870 approved biotech (protein/peptide) drugs, 103 nutraceuticals and over 5,023 experimental drugs. Additionally, 4,772 non-redundant protein (i.e. drug target/enzyme/transporter/carrier) sequences are linked to these drug entries. Each DrugCard entry contains more than 200 data fields with half of the information being devoted to drug/chemical data and the other half devoted to drug target or protein data."

I strongly suggest reviewing this site and putting it in your favorite places. Excellent source of information for the drugs listed. Again it isn't that easy to navigate as I learned in trying to quickly locate information for Bosnian. Bummer.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 09:43PM - edited Oct 11, 2017 10:11PM by sas-schatzi

Bosnian your question: " Now, are you saying that Olaparib effectiveness was lowered because of Pain meds for back that she was taking? Olaparib is also metabolized through CYP3A4?" The way I read the info from Drug Bank is that the pain meds are inhibited or decreased effectiveness. It didn't state that Olaparib is inhibited.

Their are many drugs that do decrease the effectiveness of olaparib. But that is a mute point now. If you need that info it is in on the dailymed.org site. I saw it before I found the Drug Bank site

Not used to working the Drug Bank site. I'm going to check in on the daily med site. All approved drugs have to show how a drug is metabolized. All drug inserts have to include this information. All drug insert info is also include in national reference sites. Then there are non national reference points(sites)

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Oct 11, 2017 10:24PM sas-schatzi wrote:

Bosnian. Carboplatin does not appear to be metabolized by the liver CYP450 enzyme paths. I checked multiple sites. It is circulated bound and unbound to proteins, then excreted by the kidney.

I may be wrong on this, but first look several places, seem to indicated this. Generally, a statement like ""This drug is not metabolized by the liver, it is circulated in this form________(whatever it is) and then is excreted by ___________(by kidney, lung, and skin).

This statement " This drug is not metabolized by the liver" was not on anything I looked at. That statement is nice b/c then you don't need to worry about a drug being affected by other drugs. Plus, none of the enzymes were mentioned. That further supports it not being metabolized in the liver.

What else do you need. Not sure what time it is at your place?

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 11, 2017 10:44PM sas-schatzi wrote:

Bosnian,

From Drug Bank, Olaparib https://www.drugbank.ca/drugs/DB09074

From Daily Med, Carboplatin

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=9dc35c59-f4f3-43b4-8251-0cf5c06cdc80

From Daily Med. Gemzar

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=9dc35c59-f4f3-43b4-8251-0cf5c06cdc80

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Oct 12, 2017 01:19AM - edited Oct 12, 2017 11:28AM by marijen

Sas, I noticed that Voltaren was discussed in aprevious post and I was prescribed it recently. I have concerns from my reading and the effect of the drug with the heart and strokes?

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Oct 12, 2017 09:24AM BosnianHusband wrote:

Dear sas-schatzi,

Thanks for the help. Btw both daily med links are to Gemzar, none to Carbo.

Today’s outcome was as expected. She received Carbo+Gemzar and next week it will be only Gemzar and we will see in the meantime how it works. In the long run Immunotherapy would be an option.

The doctor is as surprised as we are to the new development, the fact that Olaparib doesnt help even though it was tested on her tissue and showed potential. But this would not be so hard if the tumor acted as we expect. Hopefully we will be the ones dictating tempo next time.

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Oct 12, 2017 10:36AM - edited Oct 12, 2017 10:37AM by sas-schatzi

Bosnian, Glad she's back on the Carbolplatin and Gemzar.

Now that you have been to daily med. Just put Carboplatin in the search box and it will pull it up. Do that also for Olaparib. Same is the case for all other drugs as needed

I back tracked on your posts and see that you have been posting since July. You mentioned in one of the posts that there was something with the liver, but that it was not stated as mets. it was questionable? Is that correct? Where is she with that?

I have a not so wild thought. Ask if a Real-time Fluoroscopy guided needle biopsy of one of the abdominal tumors can be done. It would be done by an Interventional Radiologist. Assuming origin of the abdominal tumors is from the BC could be a mistake. It needs to be verified by pathology. With the pathology the choice of, or addition of another chemo agent is based on fact not supposition. Your Medical Oncologist will give you an answer on this.

With the Olaparib even with tissue testing, I think it would be a fair thing to ask for review of and an explanation from the Phoenix people in light of the rapid growth of the abdominal tumors and the spine tumors.

1. Were they in error The odds of admitting that are slim

2. This may change how they would recommend the drug in a similar circumstance. Considering it was an "off use label" of the drug. It's approved use was for Ovarian, Fallopian, and abdominal mets from those origins.

3. It would/should trigger a required report to the FDA and manufacture as an adverse event. It falls under the category of "After marketing" report. That would be seen by others that may prescribe it off label in a similar circumstance.

Good Luck, sassy

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 12, 2017 06:03PM - edited Oct 12, 2017 06:10PM by sas-schatzi

Hi Mari, Voltaren as you likely know is an NSAID. If you think of all the NSAIDS and straight line spectrum of 0-180. Voltaren is in the upper 25 % of strength and untoward effects. That is why it is to be used only for short use during an acute problem i.e strains and sprains.2-3 weeks.

All the NSAIDS have been associated with heart attack and stroke. They, also, can cause a bleeding problem. B/c Voltaren is so strong it, generally, is prescribed for the last couple of decades as a topical gel. Gels can be absorbed into the systemic circulation.

Care should be taken to not use NSAIDS if there is kidney or hepatic impairment.

Always use the lowest dose of NSAIDS to accomplish control and take for the shortest period possible.

Using non-drug methods for pain control as a first choice and then as an adjuvant to drug management is a good appraoch. The NSAIDS have an anti-inflammatory action, non-drug methods that will help the drug do it's magic are: Elevate extremities when sitting and laying. Pump the hand or foot to promote flow. With the back, reposition often and or take periods to get up and walk around. Even a few minutes will help destress the back.

On of my Favs is the use of warm moist heat. Take washcloths and moisten. They should not be dripping. Place over site, place heating pad over top. Medium to low heat. Avoid high always. I have used two heating pads with cloths for my knees when I was on the AI's. Then it was daily. Oh Vey.

Never lay on top of a heating pad, unless closely supervised b/c if you fall asleep , you may be burned.

Never place a heating pad over any "patch medication" It may cause an increased absorption and cause an overdose.

Warm moist heat can be a delightful source of relief.

Conversely, Cold can be nice too. Take a wash cloth and moisten. A larger towel can be used for a larger surface area. Place in freezer. The beauty with this is it will defrost in a short time so there is no concern of causing a cold injury/frostbite as there is with ice bags which should be rotated 10 on-- 20 minutes off.

The freezer cold towel method works very nicely for subduing itching.

Did this help? Have you found anything you would like to add. You always bring helpful info to any conversation and I appreciate that about you :) Thanks sassy

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 12, 2017 06:59PM - edited Oct 12, 2017 08:06PM by marijen

Hi Sas, thank you that was more than I was hoping for. I also read, I think @ drugs.com side effects, that you should never put heat on top of the Voltaren gel area, only before it's applied for anyone reading. Thanks for your input.

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Oct 12, 2017 10:13PM Lita57 wrote:

Thanks, Sas, for the info on Voltaren gel. My palliative care doc Rx'd that for my back pain. I'll have to use it sparingly because of the heart and stroke problems. The VERY small print data sheet in the box listed a few things, but it's hard for me to read with my whole brain radiation eyes now. (Sadly, one of the neurological deficits is really blurry eyes now. Have to wait to see the opthamologist because we don't know yet how much worse my eyes are going to get.)

L


Stage IV Occult, Amorphic right from the gate. New Brain Mets Aug 2017. I've been dragged into an arranged marriage that I didn't agree to, & divorce is totally off the table now that I'm married to Mr. Cancer. STAGE IV LIVES MATTER! Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/26/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2- Radiation Therapy 9/5/2017 External: Brain Chemotherapy 10/10/2017 Taxol (paclitaxel)
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Oct 13, 2017 02:22AM sas-schatzi wrote:

Lita glad you saw this. However, I hope when you use voltaren it does work well for you. Her's to a less pain day and night.

Thanks Mari :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".

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