TRIPLE POSITIVE GROUP

rljes

Chemo #5 of 6 

Hi everyone, 

tid2017 - My chemo's - even the first one was a quick -uneventful 6 hours.  They first drew blood, then I went to see the MO, and back to the chemo room where they gave me Ativan to calm my nerves, anti-nausua (two different types) and steroids.  Then the Herceptin, and waited about 30 min to see if I had any reaction, (no) then Taxetore - where the RN  brought me ice packs especially made for the feet and hands (I only used for my hands) then Carboplatin.  Then placed the Neulasta Pod on my stomach.  Done.  It was all over before I had time to read my book or listen to my music.  I got up several times (dragging my chemo pole with me) to go to the Restroom and "shop" for hats and beanies they were giving away. 
  Only when I got home did the "lead feet" hit and severe fatigue. 
I do feel for you having your Port placed the same day Chemo.    Hopefully what Blownaway said will help - you will be so groggy from the Port placement you won't worry about the chemo treatment! 

Posygirl - Yes, I would like some titles of books to read please.  I'm always looking for a good book to read. 

As far as anniversary's go, I have no idea when I was Dx.  I thought it was in July, but I can't find it.  I'm not going to search, therefor I can't dwell over it. 

Take care all! rj

Tresjoli2

ahh...crummers. I am NOT menopausal. I'm not even perimenopausal! Doc called and confirmed it. I haven't had AF in three years, so how could that possibly be? This is an issue because hormonal bc is completely out of the picture for me. I wanna be menopausal dangit! Sighhhhh....stomps foot... still waiting for doc to call back. Can I get pregnant? Will AF come back someday? How could my ovaries possibly still be awake when I doused them in chemo and two years of lupron...how!

Rant over....

shelabela

Hey ladies,

Anyone notice a change in their teeth? My teeth were never sensitive before but now they are. And i have never been one to get many cavities and now...... also chipped a damn tooth. And dentist said another one is broke. Wth?

PoseyGirl

RJ - What kind of books are we talking (I forget which kind I alluded to)...just pleasure reads or else cancer-related and diet related books?

BJI

Shelabela - I finished taxol\Herceptin end of August, continuing with Herceptin every 3 weeks. In November I cracked a molar, 2 weeks later an access on an upper molar. Several weeks ago chipped a lower front tooth. Thought just a run of bad luck, but wondering if from taxol or herceptin?

BellasMomToo

Interesting about the dental problems....The day before my last herceptin (10/20/17) one of my molars broke. It previously had a root canal and a crown. It broke off right at the base. In November I went to an oral surgeon and had the tooth extracted. Now I'm planning to have a dental implant.

I've had dental problems all my life but have been okay during the last 10+ years. I wonder if chemo/herceptin had anything to do with my broken molar if my good (dental) luck just happen to run out the day before herceptin ended.

coachvicky

Blownaway

What a great childhood you had. I do miss those fogging trucks ... they were as much fun as the Good Humor man.

You brought back woderful memories this morning.

Thank you.

Vicky

coachvicky

About teeth ...

Sorry ladies about the chips, breaks, and dental problem.

The "book" my center gives cancer patients on the first day of chemo says to get a cleaning before starting chemo. I pointed out that this was a little late notification.

A friend told me to get a cleaning before starting and I did.

At my six month check, the dental technician asked if I had "permission" from my oncologist to have the cleaning. Well, no ... Frankly, I didn't think it was anything for him to have input into! She shared she does a modified cleaning with a chemo patient. I opted out of any dental x-rays during treatment. I am unsure why. The dental technician advised to skip them and wait until I was out of treatment.

I have been with this dental firm for years. The dental technician's father is a cancer survivor. I think that made a difference in what she brought to our relationship.

My dentist said in January (last check up) that he could not tell from my mouth that I had chemo or the Prolia injection. I know that I am lucky. The entire top and bottom of all my back teeth are crowns. It would be a small fortune to redo them.

The only thing I did differently during chemo and continue today is using a softer brush and brushing more frequently (up to 6 times daily).

Vicky

Ingerp

Oy! Not enjoying reading this part. I have had so much dental work done--mine even responded poorly to pregnancy. This *is* all good info, though. If I end up going that route I'll remember about the softer brushes. I already brush a minimum of three times a day, and recently started flossing twice a day (randomly remembered something I'd read ages ago that said it can have a significant impact on dental health) (or something like that).

SpecialK

It is a good idea to see your dentist for a cleaning and exam prior to starting chemo, if possible. It was recommended to me to do this, and many oncologists suggest it. I was able to have a thorough exam due to the surgical delays prior to the start of chemo for me. My dentist has commented that he has seen some patients impacted by chemo, but it is not the norm. My dentist's wife was also a cancer patient, she had stage III ovarian cancer not long after I was diagnosed and is doing well, but as stated in coach's post above, I believe it informs his opinion for the better. I have had no issues since treatment, other than some usual minor repairs for wear and tear to the extensive amount of dental work that I had prior to chemo, and one cavity. I got my first two crowns while I was still in high school...

Ingerp

Good to hear, SpecialK. I happened to have a cleaning/check-up last month. :-)

Ingerp

Good info, KB870.

PoseyGirl

I was very vigilant about flossing and using the baking soda/salt mouthwash combo. After treatment, my dentist said that my teeth were in excellent shape, but that was due to my flossing efforts. I would say the water pic and flossing are critical. Before all this, I was told I have early stage gum disease. I had a procedure to deal with that, and so I'm concerned about the fact that I'm on Zometa and shouldn't have dental work if I can avoid it. So I go in for check ups every 4 months so they can do a thorough cleaning. I have to get back to a better flossing regimen. So yes - I agree that keeping up with the dental hygiene is so important.

Anonymous

I was so thankful that I was a diligent flosser prior to chemo. My daughters have always called me the "Dental Floss Queen" because I always have floss in my purse and I don't hesitate to use it after every meal we eat out. Lol

Trisha-Anne

Can I just add my 2 cents worth in here about treatments and the damage they cause.

I've had two lots of bc five years apart. My first go around was in 2010 with a triple positive stage 2A. I did three rounds of FEC and was supposed to do three rounds of Taxotere, but could only manage two because of severe side effects. I completed twelve months of Herceptin. I also went on Arimidex, which was pretty awful for me and swapped to Aromasin which was better, but had to change to Femara after 3.5 years.

Five years later I had a lump in my opposite breast - so a brand new primary which was triple negative, stage 2A. Very unusual - but hey - I'm special lol.

I did three rounds of AC (couldn't do the four that were recommended because of lifetime limits) and then twelve weekly doses of Taxol. AC kicked my butt big time, but the Taxol was not so bad.

When I found out I had it a second time, I told my husband that there was no way I was going to do chemo a second time - I couldn't face it - I just wanted to leave it and face my certain death.

After a few days later (and no "encouragement" from anyone in my family) I decided to at least try chemo again - if it was as bad as the first time, I'd just stop.

I completed it all. I now have a lot of health issues from two lots of pretty aggressive chemo. I do have heart damage from it - "luckily" it's the right side of my heart, so not as serious as if it were my left. I have a lot of swelling in my legs and ankles because of poor pumping from my heart. I also have liver issues, and recently my iron levels had dropped to critical levels. I have a lot of joint pain from my years on AIs, which I have now stopped due to side effects.

If I had my time over - would I do it all the same? Almost certainly. Chemo has saved my life so far - and yes my quality of life is not as great as it would be if I hadn't had bc, but I'm still alive.

Would I go the alternative route? No. I use complimentary treatments to help me though - but I have no basis to believe that alternative treatments alone would have kept me alive. I'm still not out of the woods - I will not be relaxed ever that I won't develop metastatic disease, given my history. If I do - then I do. I don't spend a lot of time worrying about it, I wont waste my energy on something that may not happen, if it does, I'll deal with it then.

My point is, that chemo is savage and it can cause a lot of issues - but the overwhelming evidence is that it saves lives. People who choose to not do it, I would never judge - but it's a personal choice - no-one else's, and I would never try to sway someone to either do chemo or not do it. My issues may never happen in someone else, they may sail through chemo with no problems and not have long term issues.

In a forum like this - we need to encourage those who choose treatment, yes there are risks and those risks can be significant, but without conventional treatment, anyone with bc that is stage 2 and above have an even higher risk of death without treatment, and that cannot be denied. But it's their choice. There are other forums on this site that deal exclusively with alternative treatments, and cater for people who do not believe in chem.

Even with the issues I have now - I'm enjoying life, my work, my family, my hobbies. When I have bad days, I hunker down and wait for them to pass - and they do.

I wish you all health and happiness - and above all peace.

Trish

xoxo

coachvicky

Thank you, Trisha-Anne…

Every once in awhile, I want to hear from someone with your experience to let me know it will all be OK. Different but still OK.

Today I needed what you had to say.

Thank you, again.

Vicky

Trisha-Anne

Hap - My point is, this isn't the right forum to raise those issues - this particular forum is for conventional treatment of triple positive bc. Newbies who come on here and are scared do not need to see what amounts to complimentary and alternative treatment ideas. These treatments may be ok for low stage and low grade cancers, but should not be pushed on a page that in the whole deals with a pretty serious type of bc.

I do understand the need to try to find what "caused" all this - but that is a billion dollar question, and unlikely to be answered in our lifetime. I do not accept that environment issues cause our cancers - yes, it may be one small component - but it is more likely to be a problem in our dna, and who knows what causes it. 

I recently had interactions with a woman whose 9 month old son had liver cancer. Yes - he may have inherited the problem from his parents/grandparents - who knows! I don't waste time trying to find the blame for my cancers - it happened. It happens to people who live in the country and far from carcinogenic/environmental causes etc etc - to people who are vegetarians, who exercise regularly, who eat meat, who don't drink, who do drink, who don't smoke, who do smoke, the list goes on and on and on.

And yes, the treatments can be harsh - but not always harsh to everyone. Some people have few side effects at all. I don't accept that "big pharma" are out to make as much money from us as they can. The person who finds the cure for cancer will be the saviour of the world, and the money to be made from a cure would far outweigh the money made from treatments.

I just do the best I can to deal with what I have to deal with, and not try to tell impose my views on other people who may be scared and just looking for an excuse to forgo treatment and change their lifestyle in the hope that their body will somehow suddenly start to attack their cancer and make it go away.

Sorry - I've lost too many friends who decided they could ignore triple positive breast cancer and through alternative treatments only make it go away - it's a bit of a sore point for me.
Trish

Magari

Trish - Very well said. I agree. Thank you for putting it so eloquently and so respectfully.

maureenb

Proud of you! I have said to myself that if I ever had a recurrence I couldn't deal with chemo and losing my hair again. Hair shouldn't be a big deal, I know, but it really was. Glad to hear your positive attitude and that you decided to fight again and made it through, albeit a little worse for wear. Thanks for sharing.

deni1661

I appreciate the conversation and everyone's point of view. Trish-anne, I admire your positivity and outlook, this is a most important message for newcomers. We can and do make it through our treatments....I think we would all agree that we are fighters. We may not like the side effects, emotions, or how we look on some days but we push through.


Just my two cents here....I participated in a clinical trial so did not have chemo, just Herceptin and Perjeta plus AI for 5 years. This was the right choice for ME. I agree that conventional treatments are what keeps us alive but unfortunately cause damage to the rest of our bodies. I am willing to accept what my MO tells me to do based on my individual needs to stay alive. To Hapb's point, I also am working really hard at keeping my immune system healthy to avoid a recurrence through what I call "clean living" (diet, exercise, meditation, spirituality). Will that work? I don't think we know for sure but I'm willing to try.

ElaineTherese

"I would not tell you what you can and cannot discuss." No, but those of us who have any faith in pharmaceutical companies are just suckers because Big Pharma is busy manipulating their data so we agree to ingest more of their poisonous products.....

I agree with deni that we all have to make our own decisions about our treatment. But, I don't care for posts which implicitly criticize those of us who are willing to give standard medical treatments a try. If BCO members wish to gripe about Big Pharma and its evil designs on us, there's section of the community devoted to alternative medicine. As a rule, I don't post there because I don't have much knowledge of alternative approaches and I respect that participants on the alternative board have chosen their own path.

PoseyGirl

Trisha, I believe your post was well thought out and caring. I will risk opposition by saying that while I firmly support a forum that encourages all flavours of feelings and information, I agree that if a certain opinion starts to pervade a thread and take hold and potentially lead to fear and despair, we should consider another thread where there are bc patients eager and passionate about that strain of thought.

Hapb, I'm sorry you feel villified. But I would be cowardly if I didn't share that I have felt discouraged and negative due to the continued influx of all the ways conventional treatment is abhorrent. I didn't mind a few posts, but it started to feel constant. I am stage 3a and have two young children I need and want desperately to raise. I've battled emotionally and faced - like everyone here - the dark void of not knowing and of deep fear. Chemo does save lives, there is no debate on this point. It causes awful side effects, no doubt about that. The world needs a cure, no doubt about that. But this is all we've got / there ain't no more. I have NO choice. Sorry, I don't. So I surely don't want to live in a post apocalyptic world more than I have to.

Whike this is a forum for open discussion (absolutely!!), we have a group of ladies who are literally embarking upon treatment. You are so right about doing all we can to boost our immune systems; I think all are in agreement on that. But when the topic turns back to how insufficient treatments are and how there is so much avarice and evil in the pharma world, can you see how this perspective could weigh upon the already terrified?

I think Trish's suggestion to visit another thread did not mean you should leave; she just feels - as I do - that you will have a more suited audience. I've been directed to other threads on the topics of hormone blockers and sexuality when I wanted more info. I just think that if you want to tell people how awful apples are when those people have just bought an apple orchard, you may be met with some angst.

Peace to you and everyone here; this is what we all deserve and need.

deni1661

A quick lob in about the dental issues....my dentist and MO also told me to take extra care of my teeth during treatment and after because of the AI. I have been doing "oil pulling" (swishing) with coconut oil for about a year or so and have no problems with my teeth. I have read multiple sources that recommend this method as an oral detoxification and to whiten teeth. I also read it rids the mouth of bacteria.

I used to have major dental problems about 5 years ago so I can't say with certainty that the coconut oil is helping, but my teeth are whiter ;-)

PoseyGirl

Deni, I’d like to give the coconut oil a go...can you tell me what you do to prep it? I have coconut oil that is like wax downstairs ;

Trisha-Anne

Hap I'm sorry you feel you need to leave this forum. I never said that my view was the only view, and I never said that you couldn't be a contributor to this forum. But, you are continually giving your view that conventional treatment for breast cancer is not the best for you - and you have that right - but this forum isn't the right place to keep posting links to information that goes against conventional treatment.

You will find more receptive ears in the complimentary and alternative forums for that. I would never tell someone to leave a forum, or that their view is inferior to mine. But in this forum, we need to support the people who are undergoing chemo for triple positive breast cancer.

I promise to shut up on this now! 

Suburbs

Hi everybody. Well, things have been really busy on the board here. Welcome to the newbies. I hope you find your participation here as much of a lifeline as I have.

I am dealing with a post-surgery infection that simply does not want to go. I'm in treatment mode running from appointment to appointment and test to test. It feels like deja vu and reminds me of the early days of 2017, waiting and wondering and googling. I have a good team of care takers and will have to try not to go down the rabbit hole with worry and anxiety. Easier said than done.

So, to the elephant on the coffee table... Communication on a board like this, mostly nameless and faceless, can often be difficult. If we met each other in person, like SpecialK and Coachvicky, I am sure that it would end up in one big, life affirming, and profound group hug. Everyone's input here is very important to me personally. I hope you all continue to participate knowing that other nameless and faceless triple positives need and want to keep this thread being the virtual community that it is. Group hug.

Jstarling

Good morning ladies, wish me luck. In a few hours I go in for the post surgery visit and to get the oncotype results which will start me in on the next path- wherever that takes me. I’m so frightened but I see you all here, strong, vocal and vital, with those same abbreviations next to you that I have been given, and I have hope

coachvicky

Jstarling

Best wishes for today.

Take paper and pen. Make good notes. Make sure everyone explains everything to your satisfaction.

Ask for a clean, paper copy of any labs / tests (not faxed or hard to read).

Vicky

coachvicky

Suburbs ...

It was wonderful to meet SpecialK in person.

Again, I would be lost without all of you on "my support team.!"

I hope your infection clears up quickly.

Vicky

Ingerp

Alrighty! Good news/bad news. Good news is I got the FISH results Bad news is I'm officially a member of the group. :-) and :-(