TRIPLE POSITIVE GROUP

Suburbs

Hi HapB. It took about 4 to 5 days to recover after my port was placed. I felt like I had been in a boxing match, very stiff and movement was painful. The port has not bothered me since then. I ask for lidocaine spray before the port is accessed. Hope you feel better soon.

Anonymous

Hap,
Call your MO ... ... please..

Hugs from TN
Denise

SpecialK

Having a newly installed port and then accessing it shortly after means that it will be sore - this is common. Usually it settles down before the next infusion, but if it is causing you too much discomfort your MO should be able to prescribe something for pain. Be sure to ask for EMLA cream (lidocaine) for use before the next infusion - you put a dollop on about an hour prior and then cover it with plastic wrap to hold it in place. Most centers also have freezing spray - I used both and never felt the access.

SpecialK

hap - how long ago was it put in - day before first infusion? It is very recent, right? If so, yes, bruising is normal as it is technically a surgical procedure. Because the access for chemo was done so soon afterward the port has been manipulated under the skin and moved around so you may have additional soreness than if it was put in a couple of weeks prior. My port was installed during my mastectomy surgery so by the time I had chemo it was totally healed, but I have seen many people on this site remark about how sore their port was if it was put in just prior to the first infusion. I have encouraged some if chemo is same day, or next day, to have the IR or vascular surgeon access it while it is numb and leave it accessed so the oncology nurses don't have to do it. Time helps - you should not have this type of soreness going forward once you have some healing. If you phone your oncologist, or the on-call, ask if you can use some Arnica cream or gel to help with the bruising.

SpecialK

hap - only our one member who is on a trial, to my knowledge. I am only aware of one other member on BCO who did forego chemo and do Herceptin only but she progressed and is now stage IV and receiving it with Taxol. Because it is not standard of care, and not yet backed up by studies, you won't see it much. That said, there are a number of stage IV women who have been able to remain NED by staying on Herceptin only over a long period of time (years) after they were done with initial treatment. Are you considering discontinuing the Taxol and staying with the Herceptin only? You might ask your oncologist about a reduced dose - I am not sure if weekly Taxol and Herceptin gets a loading dose (Taxotere with other drugs and Herceptin does) but many patients have somewhat more intense side effects with the first infusion for that reason.

kae_md99

i am now prepping for surgery next month. i want to take vitamin c but i cannot tolerate the pill.it makes my reflux worse. is there any other vit.c that i can dissolve/dilute except airborne? i dont need the extra stuff in airborne

Suburbs

Hi Kae. My nutritionist recommended Impact Advanced Recovery by Nestle for a presurgery boost. I found it on Amazon. It seemed easier than trying to load up on various supplements. Just a thought.

I am 5 weeks out from TCHP Number 6 and still completely exhausted. This may be a bit worse due to the minor detour with surgery to remove suspicious bladder lesion complete with stent and followed up with a UTI and antibiotics. I am told this is the normal cumulative effect of the chemo. Has anyone else had a similar experience after their last TCHP?

kae_md99

suburbs,

how often do you drink it

ElaineTherese

Suburbs,

I didn't have TCHP, but I was tired after five months of chemo. I remember scootering with my sons after I finished chemo, and how slow I was. (I couldn't keep up with them!) Then, of course, I had surgery (January) and then radiation (March/April).... I don't think I regained my energy completely until May, when I started swimming daily with one of my sons. Sigh. It IS a marathon.

Suburbs

Kae, for pre surgery, 3 - 6oz drinks daily for the 5 days prior to surgery.

ElaineTherese, thanks for sharing. Like Kae, I am getting ready for surgery. I have been surprised at how bad I have felt the last month or so. I thought I would begin to rebound but so far every day is a struggle just to get out of bed. I am going to force myself to get on the treadmill. It's been a few weeks.

Tresjoli2

HapB I had no idea you were in Boston! I was at BIDMC for treatment. We're neighbors! The port pain should quiet down in a week or so...

Anonymous

Went and had my echo cardiogram done today ... haven't heard anything yeah or nay .. most likely it will be tomorrow if there's anything wrong with my heart.. and I can't do the chemo

And I attended the "chemo" class.. which lasted about 3 1/2 hours.. there was 4 of us... it was pretty good... the RN answered a lot of the question we had . She walked us through the whole process
I feel a little bit better now ... I know I'm in good hands..

I was the only "trouble" child aka Triple Positive in the room .... yeah go me ,right? But the RN explain a lot of what "I" should expect....
They are going to start me out with "big" bag of fluid... and anti nausea meds... then the Herceptin (est time 1 1/2 hours)... doing it slowly to see if I have a reaction .. then I get Perjeta (est time 1 1/2 hours)...then the Taxotere ( est time 1 hour ) and then lastly the Carboplatin (est time 30 mins ) so for my first chemo I'm pretty much going to spend the day with them....

The RN gave us a tour of Infusion area ... one of the ladies broke down crying ... I was so glad her husband came with her... she is so young and with two small kids.. Then in one of the treatment rooms there was a young man who looked like he was maybe 18? 19?..
I freaking hate cancer ..

FYI the RN advised us to do the ice on the hands and feet... and if we could afford the ice caps for our hair.... she said her pt have really good success with the ice keep the neuropathy to a minimum to none.... and she said the "cold" caps are good to use, too .. but you will still lose some hair.. I'm going to pass on the cold cap.... but I'm doing the ice on the feet and hands..
I only have to do it with one of the meds... not all of them....
She said to do it 10 min. before your start the chemo and 10 mins afterwards...
The 2nd RN that was there said there was a study done in Japan that showed really good results with using the ice....

I'm not the only one getting the port put in on Thursday and then chemo on Friday it seems....The RN said that we'll be sore on Friday night and for a couple of days... but it should be feeling less sore as the week wears on ... if not call them ...

She gave us all kinds of info to take home ... from what to do "if" this or that happens.. phone # that we need call ... were we can get wigs ....even an org. here in Nashville that will deliver one meal a day for free... as long as you are in treatment and live in our county ..
The American Cancer Society will give you one free wig and one free head covering ...
She gave us a whole list of wig shops that gives discounts to BC pt....

I'm really glad I went today... still not looking forward to this.. but I don't want to die either... got too much living to do...

Thanks for letting me ramble ... .
Hugs from TN
Denise

Anonymous

Thank you Hap...
I believe so .. I think the day of ... I know that I'm getting a lot of things besides the chemo drugs and H and P ... lots to take in..
Oh don't you worry this week I'm eating whatever the hell I want.. because after Thursday its a different world I will be living in for the next year
I don't want to do this .. its scares me so I'm starting to have a lot of anxiety .. what most scares me is the allergic reaction .. I just know they are going to give it to me and I'm going to die... I can do the hair lost.. I can do the diarrhea... even the low white blood count ( that's 2nd on my scares the shit out me list ) ....
Its like we are stuck... either we take these meds.. or we will die.. period... no choice .. no going to plan B or C or D in life... time is up !
I know I have a choice... but either way I'm pretty well screwed... death on Friday or death in a year or so from the cancer ...
I freaking hate this cancer... HATE IT ...

Hugs from TN.
Denise

toughcookie_21

I've been in a holding pattern since getting my genetic testing back last week and finding out that I'm carrying the BRCA2 gene mutation. I was originally going to have a lumpectomy on June 20, but now I'm gong to have a bilateral mastectomy (BMX?) with some sort of reconstruction. I assume chemo will come soon after. I'm meeting with the plastic surgeon on Wednesday and I really just want to get this over with at this point. Has anyone on here had the BMx and then chemo/herceptin AND radiation? They're telling me I'll still need radiation.

HapB-I'm sorry to hear you're having so much pain with the port. I think I'll ask if my port can be put in when I'm in surgery for the mastectomy. I bruise very badly.

I asked about the ice caps and ice for hands and toes and they said "it doesn't work"

Anonymous

I don't think I have a choice.. I'm Stage 2a right now.. it could be upped .. won't really know until the surgery ... My tumor is 1.7 cm with one lymph node involved for sure.. confirmed by MRI and mammo .. Triple positive..... yeah .. cancer has taken the choice away from me..
I promised my husband and kids I would try and fight it... but I'm so scared...
I don't think there was a person in that class except the RN's that wasn't afraid ... all of us teared up at one point or another during the class..
If I make it out alive and kicking I'm going to be one tough ass broad lol
Hugs from TN
Denise

Anonymous

Oh.. I forgot

At the end of the chemo round they're putting on the disposable Neunesta (sp?) unit to up my white blood count...
It will go off I think she said in 24 hours,maybe 36 ..can't really remember ...it will automatically injected me .. when its done I can take it off and throw it away... then I will get a new one each round of chemo.. so I don't have to come back in and get the injection...
I'm to take Claritian the day before.. the day of and I think for the next 2 or 3 days after the Neunesta unit goes off...it will help with the bone pain...
My white blood count will be at its lowest for 7 to 10 days after the chemo... then I should start to feel like myself again...
And then we start it all over... weeeeeeee !

Anonymous

See ..right there... Toughcookie's MD say it didn't work... my RN and MD says it does.. I wish the medical world get their shit together ...
I'm doing it... between the RN and the other ladies here on these boards who have done it and said it works for them.. that's good enough for me.. lol

Hugs from TN.
Denise

toughcookie_21

Despite the fact they're saying it doesn't work, I am absolutely going to bring my own ice for my hands and toes and to chew on if they're not going to supply it. I have not given up on ice caps yet eithe

Anonymous

Thanks Hap... right back at cha ..

they told us the reason why it works is because the cold makes the blood vessels clamp down... so the chemo can't get up into the fingers and toes..
The RN stated that they have ice and surgical gloves to wear ... here but we would have to bring our own "baggies" or containers to set our hands and feet in .... or we could by the special socks and gloves... but she said most women will bring baggies and ace bandages ... put one bag of ice on the bottom of their foot, then one on the top....and then wrap the ace bandage to hold it on... same way with the fingers...
For some on these boards .. have put on gloves .. stuck their hands and feet in ice ....
It has to be changed out every so often .... so you would need to have someone there to help.....

Here's link to the study and info and to a blogger who actually did it.. I think Denise is on Breastcancer.org ...

http://www.oncnursingnews.com/web-exclusives/froze...


https://denise4health.wordpress.com/2013/04/18/icing-hands-and-feet-during-paclitaxel-taxol-and-docetaxel-taxotere/


Hugs from TN
Denise

kae_md99

i did ice my toes and fingers and sucked on ice during chemo and honestly my neuropathy is very minimal if at all. nails are intact,just turned whitish with a couple of nails whitish gray. i got a bucket , one for my hand and one for my feet. filled it up with ice from the infusion center and wore gloves and socks on my feet and covered with plastic bag , so socks won't get wet.( the kind they use for fish in the store) and submerged them in the bucket. when i could not handle the cold anymore, i give them a rest then put them back in...didnt do cold caps.too much work.

twiggyOR

DeniseT, Please know that the anxiety you are feeling regarding your first chemo is normal. I think it would be abnormal if you weren't afraid. The nurses will be keeping an eye on you and you should have an emergency call button if needed. I never witnessed any emergencies and I was in a large infusion center. Once you get past the first treatment this anxiety wil lessen but it still all sucks. It's a long road with many appointments but, like you said, you don't have a better option at this point. It helped me to mark of days on the calendar so I could see I was moving toward milestones (1/3rd done with chemo, 1/2 done,etc).

I also got the Neulasta on-body injector. It's a little uncomfortable but way better than going back for the shot. I found I preferred it on the back of my arm rather than on my abdomen. Mine went off 27 hours after they set it and it took 45 minutes to do it's thing.

Good luck with your first chemo.

lilianandrich

Hi, we're new to the forum. I'm posting for my wife as she is still working on her English.

What kinds of diets did/are use during chemo and or radiation? Did anyone try ketogenic (or high fat low carb) diets at all? How did you feel?

We are meeting with our oncologist today to determine chemo treatment options. Neither Kaiser nor Georgetown University hospital oncologists have indicated any nutritional stance, other than "probably not good to take any vitamins during chemo" and "many patients lose their appetite".

We found this article which seems promising for diet based treatments alongside chemo:

(they don't allow link posting here, but just do a google search of "ketogenic diets as an adjuvant cancer therapy")

Thoughts? Experiences? Thanks so much in advance for sharing.

ElaineTherese

liliandrich,

It might be wise to avoid planning for any particular diet during chemo. Chemo can alter your wife's digestive system and taste buds (though that might be mitigated by sucking on ice chips during chemo). She could get mouth sores, heart burn, diarrhea, nausea, constipation, etc.. She should eat what she can tolerate, and that might not fit any particular diet. I ate what I could eat, especially during the Taxol portion of my chemo. Even so, I lost 10 pounds during chemo.

The most important thing to do during chemo is to hydrate, hydrate, hydrate. Fluids, fluids, fluids. I quickly got tired of drinking water and switched to light lemonade and light fruit punch. I also consumed lots of bland soups like chicken noodle.

During radiation, it's a different story. Radiation should not have much of an impact on your wife's toleration of different foods. At that point, I just tried to eat nutritious foods -- fruits, vegetables, etc..

Best wishes!

Oh, and they do allow for link posting here.

Soxfan75

toughcookie_21 - My BMX was on 02/07/17 and that has been followed by 6 rounds of TCHP every 3 weeks. I will continue with the Herceptin and possibly the Perjeta (with insurance approval) for a year. Once I'm done with my 6 rounds, I'll have 6 weeks of radiation. Don't let them tell you that cold caps don't work. They absolutely do!!! I've finished my 4th round of TCHP and I've only lost 10-15% of my hair. I can barely tell that I've lost any and my friends can't tell at all. If you're willing to put the effort in, it's really worth it. I also use bags of frozen peas to ice my fingers and toes during Taxotere, and other than a little whitening of the toenails, it's been a success. Frozen peas are much less messy btw. When are you scheduled for your BMX?

shelabela

I am done with Chemo!!!!!! Had my last dose on Monday! I now have a 5 week rest then I have a bi-lateral mastectomy. I am so glad to be done putting chemicals in my body. I did 12 Taxol, then 4 DD AC treatments spaced 2 weeks apart. What a relief to be done!

I now move over to the Surgery boards and read up on what is coming at me! For those that have surgery already here, How did it go an what should I expect. I do believe I will have TE put in as I will have to have rads. Don't be shy give it to me straight. LOL

Thanks

Hope everyone is having a great day!

ElaineTherese

Special K will undoubtedly be along soon..... From my (more limited) understanding, doctors universally recommend Herceptin for those whose cancer tests positive for an overexpression of the protein, HER2. Furthermore, in the United States, the national guidelines recommend Perjeta for early stage breast cancer for neoadjuvant (before chemo) treatment if the breast cancer patient's tumor is 2 centimeters or larger.

That means that American insurance companies are most likely to pay for Perjeta if your doctor follows the guidelines and the patient does chemo before surgery and has a relatively large tumor. However, oncologists may be able to convince insurance companies to pay for Perjeta after surgery, so some women have accessed Perjeta even if their doctors haven't followed the national guidelines.

In Canada, however, access is more limited to Perjeta for early stage breast cancer patients. Also, some patients -- like Special K -- were diagnosed before the national guidelines recommended Perjeta (it's a relatively new drug). So, some HER2+ women have only been treated with Herceptin even if they might have qualified for Perjeta under the current American guidelines.

ElaineTherese

Yes, HapB. You are early stage. I was Stage IIIA, and still considered early stage (though I was also considered to be "locally advanced" -- talk about mixed messages!) I assume you're not scheduled to get Perjeta because your tumor was less than 2 cm. I haven't heard many women complaining about Medicare myself, so you may be in good hands.

Anonymous

Hap,
I'm getting both..... I'm getting 4 meds in all 6 rounds... Taxorera, Carbonate , Herceptin and Perjeta .... then surgery , maybe radiation.. and then finish out the year with just the Herpceptin and Perjeta .. then 10 years on the anti estrogen pill

Hugs from TN
Denise

Anonymous

Yeah!! Congrats!!!
Hugs from TN
Denise

kae_md99

congrats shelabela! done with TCHP myself and gearing up for BMX with TE's..my surgery will be july 14