TRIPLE POSITIVE GROUP

morrigan,

Cold capping was the worst bit of my treatment. I hated it. However, I barely lost any hair and family members were not even aware I was doing chemo!

I only washed hair once every 10 days! Oh my... that was vile. I also used very mild shampoos on my hair. But I still used hair dryer and straighteners. My hair seemed to go very dry on chemo so I also used a Swarzkopf hair treatment. You can get them on amazon and leave in hair for few mins.

I thought cold capping was soooo worth it!

I hope your hair is doing well and staying where it should.

You’re right that it does stop falling out eventually. After my first chemo I had one shedding. Sort of tumbleweed if hair. I sat and cried and then no more came out after that. So I was pretty happy with that!

Doll

Hi guys,

So we got a call today from oncologist to say my mum has to go in next week for and ultrasound to check her heart is up to chemo.

She has had a Muga scab which was good but mum has mild arterial stenosis.

It was suggested that that might mean no herceptin. But I’m not sure if that means no chemo or perjeta too?

Then as if not bad enough we’re told that mum might just be given some hormonal tablets and sent home into Covid is fine with. I am shocked to hear that this is the state the NHS is in.

Am I being ridiculous?

I have stated clearly that if no chemo then we expect at the very least an operation!

Oncologist called back ten mins later with an appoint for today to get the u/s done.

She is well aware I’m not happy.

Am I right to be so angry???

I have GERD and the chemo made it unbearable. I was put on a protonix med and then went back and reviewed my GERD diet restrictions. I had not had a lot of problems with acid reflux before due to meds and had let things back in my diet. During chemo, milk shakes and coke floats tasted so good. They were one of the biggest offenders of acid reflux. The milk and cream are big no no's. Once I cut those out, I had a lot less acid reflux. Frozen yogurt did not hurt me. I was also drinking cran-grape juice - it was one of the few liquids that I could tolerate as far as taste. Again, it was causing the acid reflux. Water is hard on people with GERD - needless to say, dehydration was a real problem for me.

Aquaphor was a wonderful - I still use it. I had skin toxicity on Taxol and used it everyday, several times on my skin. I used on my nose, also. I still use it today.

morrigan - are you getting steroids before/during/after your infusion? The Decadron will cause the face to flush in some, it definitely did for me. I have had several steroid treatments, not connected to breast cancer treatment directly, and have gotten the sunburned face look for a few days every time. I did have an allergic skin response to infusions beginning at the half way point. It is hard to be sure what is causing the problem, but I will say that it lessened once the chemo portion was finished, so I am inclined to think it was Taxotere. I had a photosensitive rash on my forearms and hands, and I had body-wide swelling, both of which subsided.

I had GERD long before I was diagnosed with breast cancer, severe enough that I had surgery for it in 1995. I had a Nissen procedure where a portion of my stomach was pulled up from behind and a new gastro-esophageal junction was made from it. Chemo affects everything with a fast cell turnover - hair, nails, skin, and that includes the entire digestive tract since it is covered with a mucosal layer. I recommend watching acidic foods like tomato based sauces, citrus, caffeine, mint, chocolate, alcohol, spices, and fat. Fatty foods tend to slow down the processing of food by the stomach and thus increase the production of acid - or at least prolong it, which can cause problems. I found that cooling fruits and BRAT diet were good for me, but if you are experiencing problems definitely ask your oncologist for some advice with OTC meds like Pepcid, or prescription strength meds if that doesn't cut it. I had Benadryl,Pepcid, Tylenol, and Aloxi as chemo premeds every time, along with steorids. I was able to discontinue those when I moved to Herceptin only, so hopefully once chemo is done you will see those heartburn type symptoms lessen or go away.

dolly - it may be worth a cardiology consult to see if your mom can be put on some cardio protective meds that will allow her to receive chemo/Herceptin. I would suggest discussing avoidance of Adriamycin, and maybe sticking to a taxane based regimen as that seems to be gentler on the heart, and the lowering ejection fraction from Herceptin is not permanent for most. If she can be carefully monitored during treatment, it may be a worthwhile trade-off, but all should be carefully considered. Agree that if systemic treatment needs to be postponed then going ahead with surgery see4ms logical - here is the US that seems to be what some are doing. Cancer surgery has not been deemed elective so far.

morrigan - I got random rashes several times during TCHP. I got the splotchy hands a couple times and rashes on my stomach a couple times. I was getting all the drugs during chemo (benedryl, steroids with my infusion, steroids to take at home, etc) but still got the rashes.

I guess the rash is just a normal side effect. I can live with it, other than the hands it doesn't really bother me.

I swear that list they go through before Chemo doesn't cover half of the side effects.

Ah well, I'm almost done, just have to keep reminding myself of that. 😃

Thanks for the feedback!

Morgan and Hapa....I laughed out loud at your posts...yes to all the weird side effects! And our minds are so full of information, it’s not like we would probably remember anyway! But I love these forums because it helps e immensely to know I am not alone! Eri

Dolly - I tried to go back in your posts without much success so ignore me if I missed something. Certainly cancer in the age of Covid-19 is a challenge. I think the moderators have a link/note specifically for the newly diagnosed. Herceptin, which is the gold standard in the states for HER2 positive, can cause heart problems. I got an echo every 3 months the year I did it. With your Mom's heart complications, I can understand the mixed messages you feel you are getting. It's sort of "what to do first" and whether the cancer or the heart condition needs to be addressed in what order, particularly when hospitals are juggling patient care. (That sentence is jumbled so I hope it makes sense). I know of no magic answer. You are clearly a caring and concerned daughter and she is lucky to have your attention to these complicated issues. Stay close and we will support as much as we can.

Taco,

Thank you so much for that lovely message. I’m glad to be on here to learn from you all and to feel so very supported.

The good news today is that i have spoken again with the oncologist and my mum will be getting an appt arranged for surgery next week. I had written to numbers of people yesterday and made a proper nuisance of myself!

My mum is much happier knowing that she’s going to be operated on.

Hapa - I love that phrase "a thousand little indignities." Describes this exactly! Hope you are doing well!

Vicky, Special K, and Tres, so happy to see theses posts about ovaries, etc. I’m bleeding heavily since Friday so I’m concerned. OB scheduled for May 15. Haven’t bled for 3 years. Crossing my fingers it slows down.

Vijaya, I had tumor markers CA15 and CA29 in the 50s, and considered low. I was told they were not usually taken and were done on accident because with TPBC, for some reason they don't tell much and if something was wrong they would be in the hundreds or thousands. I went on to have all the scans and everything came back clear. Hang in there!

going to add another question to the list. My MO never mentions tumor markers or kidney function when checking my blood.

thanks a lot Kim

Tumor markers are done by oncologists based on philosophy. They are not recommended for early stagers in the ASCO and NCCN guidelines, but my MO does them for his patients. I had markers in the normal range, for a cancer patient, at diagnosis and shortly thereafter, but mine rose during chemo, and were double the high end of the range by the time I was done. Inflammation can skew these tests and I had a lot as a result of chemo - rashes, swelling, etc. It took about 60-90 days, but the marker (CA27/29) did return to the range. This is one of the reasons some docs don't use them, and they are not a universally reliable indicator - even in some with mets.

morrigan - as kimmh says above, if you are having a CBC and CMP done, your kidney function shows on that CMP as noted above, and also the eGFR result on the CMP (Complete Metabolic Panel), which is tied to kidney function. You should be having both of these tests done during chemo because they are the only way your MO will know how your kidneys and liver are doing - which are the two avenues for elimination of the drugs. The liver results they usually track are AST and ALT. It is common for all of these to be somewhat off during chemo, then return to normal results range as you get further out from treatment.

vijiya - what type of scans are you having?