When to consider ending treatment?
 

As a stage IV HER2+ cancer thriver for the past four+ years I wonder when treatment should end, if ever? I have been in a full remission for four years but continue herceptin and perjeta every three weeks with no end in sight. As many of us know all too well the copays, deductibles, etc restart the 1st of the year. The costs are becoming unmanageable despite changing insurance. I know there are stage IV thrivers amongst us here that are no longer in cancer treatment but are most likely being closely monitored. Any thoughts?

Re: When to consider ending treatment?
 

Colleen, I feel for you - here in Australia, Herceptin is provided at no cost so I am nearly 6 years on. System isn't perfect by any means though as I can't get free access to Perjeta. Sometimes I wonder if it might be possible to stop completely. So sick of it all! There have been threads about this and a number of women who have stopped and thrived. Will be interested in what you can find out.
Best wishes... Pam

Re: When to consider ending treatment?
 

Well, PHEWWWW! When I saw the title of the post this was not the subject I expected. I am glad to read that you continue to do well. I wonder the same thing myself as I enter my third year of MBC treatment. I am so weary of the appointments, the physical fatigue, the financial drain and the emotional wear; but then I remember that it took less than a year off of Herceptin to go from "cured" to MBC and I am reminded that I had best stay on my treatment.

Re: When to consider ending treatment?
 

Thank you for the responses! You have my mind beginning to turn a corner. I must find ways to keep my costs at a minimum, and that will eliminate some stress.

Re: When to consider ending treatment?
 

Hello Colleen,

I am out 6 yrs and 4 mths from my dx of metastatic breast ca. I, too, long for when I can quit. I am grateful for LT remission status and feel the treatment fatigue as well. I have joked with my onc; if I stay in remission up to year 10 would he take me off the herceptin. He just smiles. For now I remain on good ole' Vitamin H. Luckily I am able to work FT and have decent health ins.

Re: When to consider ending treatment?
 

Hi Colleen,

Just my 2 cents here, but I wish that I had never stopped my good old Vitamin H! I too was in Long term remission, and really thought perhaps I was cured. Inspired by our own Steph N. and Andi B. (and others whom I can't remember now) I decided to take a break from Herceptin.

Well, the beast came back again big time. Even with Herceptin, Taxotere, and Perjeta, and now Kadcyla, I've not been able to get to a point where my tumor markers are steadily in the normal range, like they were prior to stopping the Herceptin. I am now on the Kadcyla indefinitely, and though I've tolerated fairly well, it's certainly not as easy as the Herceptin was!

Who knows, I may have eventually recurred on just the Herceptin, but there will always be that ? in my mind.

This just goes to show you how incredibly different we all are in our response to these drugs. Like my old oncologist used to say, "we are in uncharted territory here" Sigh.....so true!

Re: When to consider ending treatment?
 

This has nothing to due with breast cancer but I see an analogy in terms of stopping treatment. Im thinking of Grand Mal Epilepsy. Nowadays many cases of Epilepsy are caused by brain injuries but often the siezures are idiopathic meaning they just happen without any apparent reason. The patient is put on anticonvulsants and often the siezures are completely controlled. After a number of years of complete seizure control the doctor can very gradually reduce the anti-convulsant drugs and eventually stop them entirely.

In about 65 % of the cases the siezures dont come back but in the 35% of the cases that the seizures do come back the drugs that worked so well before dont work anywhere as well. If a patient is well controlled on meds many docs just keep the patient on the meds for life. It might be a lot safer to stay on the Herceptin. I hope this analogy makes some sense.

Paul

Re: When to consider ending treatment?
 

A bit depressing though, Paul. Sometimes I feel "survivor guilt" and others, I just wish it was over - the treatment, I guess i mean. So grateful it is working and hope new advances are equally promising. Bring on ont 380? I "failed" Kadcyla on a trial in 2012, but my oncologist is prepared to give it another try if (when?) Vitamin H stops working.
Regards to all.... Pam

Re: When to consider ending treatment?
 

Thank you everyone for the feedback. @paul I like the analogy it is thought provoking. Guess I will stick with my H & P for now unless I no longer have insurance or I decide to throw the towel in.

Re: When to consider ending treatment?
 

When to stop treatment? When the fat lady sings? I think for each person it is different. I was strongly considering stopping and just living and enjoying my life NOW. Instead I'm going to give Kadcyla a try, to see 1)if I can handle the 6 hour infusion without allergic reaction 2) if I can handle side effects and what that means 3) if it works.
After so many years on herceptin, it has not offered enough control of late. So buh-bye vitamin H, see ya in a slightly different form in Kadcyla aka TDM1. Thinking of Chrisy, Brenda, KDR, Sheila and the many other sisters who had a lot of fun making rap songs inspired by RUN DMC to RUN TDM1. They were such warriors and leaders when I first joined this board, inspirers and they have all been so much in my mind as I contemplate this next step. I've had a faux stroke all week from nerves, and so it goes and goes...Monday TDM1 #1 for me!! COLLEEN, I think you will know when you know. Keep fighting!! xoxo

Re: When to consider ending treatment?
 

I will be thinking of you on Monday Fiori and hoping your first infusion goes well.

On my infusion days, I take a generic Zyrtec 2 hours before, and when I get to the infusion suite, they give me 2 decadron tabs. Then I wait a half hour before they start the infusion. Keeping fingers crossed you will get through this without a reaction (other than stomping the cancer to death!)

And Paul, I do like the analogy. It absolutely makes sense!

Kim

Re: When to consider ending treatment?
 

Curios about Vitamin H. What is it and what is it used for. Anti allergy Med ??
Thanks.

Re: When to consider ending treatment?
 

Its just the this board's slang for Herceptin. :)

It took me awhile to figure it out, too!

Carol Ann

Re: When to consider ending treatment?
 

Well look what I found by accident.

https://www.umm.edu/health/medical/a...tamin-h-biotin

Small snip of article

Vitamin H (Biotin)

Overview

Vitamin H, more commonly known as biotin, is part of the B complex group of vitamins. All B vitamins help the body to convert food (carbohydrates) into fuel (glucose), which is used to produce energy. These B vitamins, often referred to as B complex vitamins, also help the body metabolize fats and protein. B complex vitamins are needed for healthy skin, hair, eyes and liver. They also help the nervous system function properly.

Your body needs biotin to metabolize carbohydrates, fats and amino acids, the building blocks of protein. Biotin is often recommended for strengthening hair and nails, and it's found in many cosmetic products for hair and skin.

Like all B vitamins, it is water soluble, meaning the body does not store it. However, bacteria in the intestine can make biotin. It is also available in small amounts in a number of foods. Biotin is also important for normal embryonic growth, making it a critical nutrient during pregnancy.

It’s rare to be deficient in biotin. Symptoms include hair loss, dry scaly skin, cracking in the corners of the mouth (called cheilitis), swollen and painful tongue that is magenta in color (glossitis), dry eyes, loss of appetite, fatigue, insomnia and depression. People who have been on parenteral nutrition -- nutrition given intravenously -- for a long period of time, those taking antiseizure medication or antibiotics long-term, and people with conditions like Crohn’s disease that make it hard to absorb nutrients, are more likely to be deficient in biotin

Peripheral Neuropathy

There have been reports that biotin supplements improve the symptoms of peripheral neuropathy for some people who developed this condition from either diabetes or ongoing dialysis for kidney failure. Peripheral neuropathy is nerve damage in the feet, hands, legs, or arms. Numbness, tingling, burning or strange sensations, pain, muscle weakness and trouble walking are some symptoms. However, there aren’t any studies that evaluate whether biotin really helps treat peripheral neuropathy.

Other
At least one study suggests biotin may help restore taste among people who have lost their sense of taste. Patients supplemented their diets with 10-20 mg of biotin daily to produce the effects. More research is needed.

Reference Guide Complementary and Alternative Medicine Guide Supplement Vitamin H (Biotin)
Vitamin H (Biotin)

Overview

Vitamin H, more commonly known as biotin, is part of the B complex group of vitamins. All B vitamins help the body to convert food (carbohydrates) into fuel (glucose), which is used to produce energy. These B vitamins, often referred to as B complex vitamins, also help the body metabolize fats and protein. B complex vitamins are needed for healthy skin, hair, eyes and liver. They also help the nervous system function properly.

Your body needs biotin to metabolize carbohydrates, fats and amino acids, the building blocks of protein. Biotin is often recommended for strengthening hair and nails, and it's found in many cosmetic products for hair and skin.

Like all B vitamins, it is water soluble, meaning the body does not store it. However, bacteria in the intestine can make biotin. It is also available in small amounts in a number of foods. Biotin is also important for normal embryonic growth, making it a critical nutrient during pregnancy.

It’s rare to be deficient in biotin. Symptoms include hair loss, dry scaly skin, cracking in the corners of the mouth (called cheilitis), swollen and painful tongue that is magenta in color (glossitis), dry eyes, loss of appetite, fatigue, insomnia and depression. People who have been on parenteral nutrition -- nutrition given intravenously -- for a long period of time, those taking antiseizure medication or antibiotics long-term, and people with conditions like Crohn’s disease that make it hard to absorb nutrients, are more likely to be deficient in biotin.

There are not many good quality studies evaluating biotin. Many of its proposed uses are based on weak evidence or case reports:

Hair and Nail Problems

Very weak evidence suggests that biotin supplements may improve thin, splitting, or brittle toe and fingernails, as well as hair. Biotin, combined with zinc and topical clobetasol propionate, has also been used to combat alopecia areata in both children and adults.

Cradle Cap (Seborrheic Dermatitis)

Infants who don't have enough biotin often develop this scaly scalp condition. However, no studies have shown that biotin supplements -- given in formula or breast milk -- effectively treat cradle cap. Always ask your doctor before taking any vitamin, herb, or supplement if you are breastfeeding.

Diabetes

Preliminary research indicates that a combination of biotin and chromium might improve blood sugar control in some people with type 2 diabetes, but biotin alone doesn't seem to have the same effect. More research is needed to determine whether biotin has any benefit.

Peripheral Neuropathy

There have been reports that biotin supplements improve the symptoms of peripheral neuropathy for some people who developed this condition from either diabetes or ongoing dialysis for kidney failure. Peripheral neuropathy is nerve damage in the feet, hands, legs, or arms. Numbness, tingling, burning or strange sensations, pain, muscle weakness and trouble walking are some symptoms. However, there aren’t any studies that evaluate whether biotin really helps treat peripheral neuropathy.

Other
At least one study suggests biotin may help restore taste among people who have lost their sense of taste. Patients supplemented their diets with 10-20 mg of biotin daily to produce the effects. More research is needed.

Dietary Sources

Biotin can be found in brewer's yeast; cooked eggs, especially egg yolk; sardines; nuts (almonds, peanuts, pecans, walnuts) and nut butters; soybeans; other legumes (beans, blackeye peas); whole grains; cauliflower; bananas; and mushrooms.

Raw egg whites contain a protein called Avidin that interferes with the body's absorption of biotin.

Food-processing techniques can destroy biotin. Less-processed versions of the foods listed above contain more biotin.

Available Forms

Biotin is available in multivitamins and B-vitamin complexes, and as individual supplements.

Standard preparations are available in 10 mcg, 50 mcg, and 100 mcg tablets and contain either simple biotin or a complex with brewer's yeast.

How to Take It

As with all supplements, check with a health care provider before giving biotin to a child.

Adequate daily intakes for biotin from food, according to the National Academy of Sciences, are listed below.

Pediatric

Infants birth - 6 months: 5 mcg
Infants 7 - 12 months: 6 mcg
Children 1 - 3 years: 8 mcg
Children 4 - 8 years: 12 mcg
Children 9 - 13 years: 20 mcg
Adolescents 14 - 18 years: 25 mcg
Adult

19 years and older: 30 mcg
Pregnant women: 30 mcg
Breastfeeding women: 35 mcg
Precautions

Because of the potential for side effects and interactions with medications, you should take dietary supplements only under the supervision of a knowledgeable health care provider.

Nevertheless, biotin has not been associated with side effects, even in high doses, and is considered to be nontoxic.

PLEASE READ ALL OF IT FOR BETTER UNDERSTANDING.

Re: When to consider ending treatment?
 

Haha!! I stand corrected!!

So I guess depending on the context of the post, it could be either one! Or I have been wrong along ... :)

Thanks, Ariana!

Carol Ann

Re: When to consider ending treatment?
 

Vitamin H/Vit H for Herceptin... This term goes back to when I first joined this board - so nearly 11 years ago. I don’t recall who first made the reference but it stuck like glue!

Re: When to consider ending treatment?
 

Ok ... good to know I'm not totally crazy! :)

Carol Ann