TRIPLE POSITIVE GROUP
Comments
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kim - it is normal for Taxol to skew your liver function numbers - your MO is doing due diligence. Avoid anything that taxes your liver any further and hopefully your labs will normalize by the next test.
hap - did you look at the link I posted? It talks about the data the FDA used for approval. The reason people have differing side effects on any of the anti-hormonals is not because the active ingredient is fundamentally different between generics - it is because the fillers and additives are different with each manufacturer. That is why many of us recommend trying different manufacturers to find the one that causes you the least issues - the active ingredient is still the same.
This is from Mylan's site - the Ogivri manufacturer:
"FDA approval was based on robust data from structural and functional characterization using multiple orthogonal techniques, nonclinical studies and pharmacokinetic evaluation in healthy subjects and patients and a safety, efficacy and immunogenicity study in relevant patient populations, which compared Ogivri to Herceptin. The data demonstrated that Ogivri is highly similar to Herceptin and no clinically meaningful differences exist between the biosimilar product and Herceptin in terms of safety, purity and potency. The FDA's decision follows the unanimous vote by the FDA Oncologic Drugs Advisory Committee (ODAC) in July 2017 recommending approval of Mylan's biosimilar to Herceptin."
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Thanks Hap and Special. I did not know that about Taxol. No Hap, I take no meds, just vitamins and normal supplements like b, d, calcium, magnesium, biotin. Been taking them for a while. B6 is new, but that helps, not hurts the liver. Besides cancer, I am pretty darned healthy...
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Thanks Hap, I am not taking anything until I get my blood work done Tuesday. I just had no idea Taxol could be the cause. I feel better already. However, in my searching and reading, I found way too many node negative, her2pos, who had mets....scary stuff
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KimCee, I was told to stop all the supplements at once when diagnosed, had a handful pills every day and was absolutely sure they were helping me to stay healthy
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KimCee - Don't worry too much about the AST and ALT levels for now. I can tell you that my levels were up and down throughout my 12 weeks of Taxol. My MO monitored it closely. I believe there was one time that they gave me a lesser dose of Taxol because of it. I think it was at the 9th week. My levels were never consistently high so it didn't cause him any concern.
Since that time, I've noticed that acetaminophen affects my liver enzymes. I did switch to Advil for pain relief when I was having lower back issues. That seemed to help.
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My enzymes spiked as well. I stopped taking a cholesterol medicine (that I had just started) and stopped taking Tylenol. They were also giving me Tylenol as part of my chemo infusions and they stopped that. I also started drinking a lot of water with lemon. My enzymes finally came down. I haven’t used Tylenol since. I also think it is a potential side effect of one of the chemo drugs. My doctor mentioned that ifthey didn’t come down that they could reduce one of the chemo treatments but they didn’t have to
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Danna and Posey, I'm way behind on reading posts but I wanted to pop in to say you both look fabulous! You were both brave to buzz it off during chemo. I was too scared to buzz it until it was ridiculously alien-looking and I regret not doing it sooner. It really does change your look, but I think k your shorter hair (or wig) brings out your features better!
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Wellshoot - I started drinking more water too. I always add lemon if it's available. Glad you mentioned that. Staying hydrated during chemo is very important. It flushes everything out.
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Thank you!!! TampaBay, Cherry, and Wellshoot
Tampa...I meant to answer a previous question you had but forgot. I get my Herceptin every three weeks. It is just triple the weekly dose. My chemo nurse said they sometimes do that in my case, work full time, this way my body is used to that dose when Taxol is done. Sorta kinda makes sense, then again, not really. End result, we get the full amount anyway.
So, being a nurse and not practicing what I preach...I don't hydrate well at all. Coffee and coffee. But I have been trying and it has been lemon water. I do get Tylenol before treatment, why I don't know. But I did have a headache in the middle of the night before labs were drawn and I took two extra strength Tylenol. Hoping numbers are down Tuesday. But...you have all made me feel better.
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KimCee - Thanks for the explanation on the Herceptin dosage. I remember reading that the dosage may be different a while ago, but I didn't have an actual confirmation of that until now. Now, I feel much better!
I drink a lot of coffee too. I get terrible headaches if I skip my morning cup.
Yes, definitely drink lots of water. I was never a big water drinker until the diagnosis. In the beginning, I had to use Mio drops to flavor the water. Now, I drink it plain, or with lemon. It helps to put lots of ice in it too.
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Tampa...Water is so boring to me. I have been filling my Yeti with tons of ice, water, and lemon. Keep it nearby and sip it. I probably get two down per day, better than I have ever done. I do eat lots of grapes and other fluid fruits, so I am trying. I love carbonated water, seltzer, but have been told to limit that due to osteoporosis, thanks to zero estrogen! My other vise is the worst...Diet Coke...and yes, I know better 😉
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Hi all, this is my 6th day on EC, of 21, the second day of my wbc shots that are equal to US Neulasta, called Nivestim here. I was expecting bone pain, like growing pain, but instead my entire body is sore, like I overworked every muscle kn my body. It started yesterday around my neck, then around my chest, got really bad at night, I took both ibuprofen and paracetamol. My hands snd feet do not hurt that much, and if I do not move I am for the most time fine laying in bed but even a tip of my nose hurts if I touch it. The clinic says that it must be the wbc shots and I had to take the painkillers, they will draw new blood work on Wednesday. Anyone who went through similar experience
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I know Hap, I am staying away. I do not have one of those bottles but have been looking to get one. I do a smoothie most mornings, banana, blueberry, strawberry, with coconut or almond milk. That is a good amount of fluid too. I feel great, oncologist was so pleased that I have zero side effects except for man sized hunger and being bald. So thrilled to hear you are beginning to feel better.
Cherry, yes, it is probably the shots. I had pain for a day when I had them 18 years ago. Hurt to even take a shower. Towards the final treatment, oncologist stopped the shots because they were increasing counts too much. Back then it was 10 neupogen shots, once a day for 10 days. What a nuisance. Hope you feel better soon.
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Kim cee, I have pre-existing liver issues which they don't have a cause for , except Gilbert's which only effects the bilirubin. Pre chemo I went organic, cut processed food, reduced fat and sugar intake, no alcohol. I hadn't asked oncologist what my liver enzymes were in the first test she did ( too much other stuff to focus on ) but when I later sawmy numbers 2 of the enzymes were back to normal levels, had been up for a few years. So my mini liver detox had worked quite well for me. Maybe try it. Also canned food from overseas can have lots of chemicals in them. Unfortunately my levels were in the high 200's after 1st dose along with Iv antibiotics. So 2nd dose adriamycin was reduced a little. I'll find out Wednesday if they've come down enough for full dose cycle 3. Good luck with your test.
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Hi Ladies,
I hope you're all doing well.
KimCee, I'm sorry about your feelings around your liver. I personally just went through a situation re: my liver and got a clear scan on it. I'm so thankful you have some knowledgeable people here to turn to on that score. It truly sucks to be so scared about things. I have another thing absolutely freaking me out.
WhyWhy, I totally get your feelings. They are so normal, and yet since you are one person all on your own, it can feel very isolating. After all, it's totally new and we have to ultimately face it all on our own. But then, there are others like us and that is why this groups is so special. I hope you find as much support, information and comfort as I have here.
So, on the topic of freaking out, I am going through something else now. I noticed a week ago or so that I have a little pain or ache at the top of my thoracic spine when I bend my head right back or forward. I sometimes feel a little ache when I'm just sitting there too. I started feeling very anxious about it, so I called in and spoke to a nurse. She told my oncologist and they are going to order up a bone scan. Apparently, in my last bone scan - which was July, 2016 - they saw what they called 'likely degenerative changes'...some slight uptake. I know that these were not noted on my two bone scans in 2016. So of course I am freaking out. I called back in and spoke to a very good nurse there. She said she's not concerned at all. I have a friend who recurred in the summer with mets to her cervical spine. She had had a bone scan (I think it was a bone scan) back in January that said the same - likely degenerative changes. And then months later, she had significant pain in her neck. They finally gave in to do another scan for her and found the mets. So I told the nurse I'm freaking out about that (because of my friend's experience) and she said that I should not compare, etc, and so forth. She was being very supportive and straight forward, so I have no complaints with her. But I'm so scared. What are the odds of me developing degenerative changes in the 8 months since I'd had the previous scan?? Does that actually happen and create some discomfort?? Doesn't it just seem too coincidental that I develop degenerative changes after I'm done my main treatments (chemo, surgery, radiation)? I was still on Herceptin at the time of that scan (almost at the end, though). After my Zometa infusion this week, I felt the pain was worse in that area for the day after, which then freaked me out more, as I know Zometa can intensify pain in damaged spots for a brief period. My nurse said that this would happen with any area of weakness in the body possibly.
Another fact that sends me off is the fact that apparently, degenerative 'wear and tear' doesn't typically happen in the thoracic spine. For me, it's at the very top, just under the cervical spine.
I have read so much about it being tough to tease out malignancy versus degenerative stuff in a bone scan (well, I haven't read a ton, but I saw a few sources). Does anyone hear have any experience that would suggest otherwise? They didn't make any scary note on the report and said 'no evidence of metastatic disease'. But at this point, I'm starting to feel it's inevitable.
The other thing is that three weeks ago, I started getting chills. Mostly in the morning and at night, but then all the time. I still have them. I've talked to both my GP and my nurse about this, and nobody sees any link between my chills and cancer (unless it were a fever). But now I'm really questioning that, wondering if my body is starting to react to the foreign thing going on in my body?
Sorry to go on - I'm having a terrible time with this and have no clue when they'll get me in for a bone scan - I'm sure within two weeks, but I don't know when.
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posey girl, I hope they get you in for a bone scan quickly, the waiting is horrible. It must be hard to stay positive after your friends experience.
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PoseyGirl, please do not panic, a lot of things can happen in thorasic spine, spondylos for example and it can be painful, age specific detenerative activity is common there. I know how awful and agonizing the waiting can be, I hope they will order it as soon as possible. It is a good sign the doctors are not concerned. Hang in there,Cherry
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Posey, I have no answers for you but can relate to how you are feeling. The waiting is the worst, I hope they get you in soon. During my first rodeo with BC, I remember strange pains that lasted a while and had me crazy with concern. It was definitely related to tamoxifen, and went away after I switched to femara. It could most definitely be cells regenerating after the poison our body has had to deal with. Hang in there, sending you a hug.
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hi ladies, thanks for being there...
I'm on an AI, Hap...Letrazole. I think I started that in May. In July I had this bone scan which showed the degenerative change comment (which was not shared with me and which did not appear in November 2016). Chemo was done end of November 2016.
Cherry, thanks for your thoughts...I became even more upset when I saw that the Thoracic spine is apparently NOT a common spot for degeneration.
I am basically starting to curl into a ball here. And why chills for three weeks???
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Sorry playing catch up....whywhy, sorry you have to join us but this is a great place for info, support and inspiration. Ask lots of questions and seek a second opinion if needed to gain complete confidence in your treatment plan. I'm 15 months from diagnosis and getting used to my new normal. You will get there too.
Posey, I understand the fear as every new symptom can be cause for anxiety. I have had tailbone pain for 9 months now. Had an MRI and they didn't find a cause, assumption is the pain is due to AI. My body aches all the time and I try to keep moving which seems to help. I hope you can get a bone scan soon, the waiting for an answer is the hardest. Sending hugs and prayers you find a solution soon.
KimCee, sorry to hear your liver enzymes are high. Mine were high a few times, once after surgery, other times probably due to a supplement or Tylenol. I never got a clear answer on this symptom either. I drink warm lemon water and a detox tea every day and lots of water. My MO said flushing the liver out is so important to get all the drugs out our system and build up the immune system. Praying your blood work is much better next week. Hang in there
Hapb, so glad to hear you're feeling better these days.
Moody, congrats on getting the TEs out and implants in! It really sucks your surgeon was so late, how inconsiderate. Waiting is so stressful. I'm grateful my PS is always on time or early. I hope the scalp itching is gone and your recovery from surgery is going well
I had my 3 month check up Wednesday; mammogram on right was clear, blood work good. I was a nervous wreck earlier this week, couldn't shut off thoughts of recurrence. I had my revision surgery Thursday and port removed. I have 5 wounds to heal but thankfully no drains. I am happy my reconstruction project is done and I can move forward.
Wishing all of you a pain free, calm and peaceful weekend!
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Posey, have you had your thyroid checked lately? Hypothyroidism can mess up your body temperature, which might account for the chills
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Posey, most of us have been there, freaking out about a pain we have that lingers. We research and then our fears grow and we think about it more than ever, I hate that BC has done this to us. The only offering that I can give is to get busy with your mind so that you don't have time to think about it. Not so easy I know. Believe me. I pray a lot and keep my mind busy as I can.
Thinking of you, Melanie
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Deni1661, quite a few milestones in a short period of time. Good news and I hope you recover quickly from stage 2. Congratulations!
Cherry-sw, taking Claritin a day or two before neulasta is supposed to minimize the side effects. I read this in my chemo group thread. Hope you feel better soon.
Poseygirl, I hope you have your test soon and everything is ok. My fight song during chemo was "pixie dust and unicorns" and it worked. So, I'm sharing both with you and sending lots of positive thoughts along with them. Hang in there. Please keep us posted
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Deni, My itching has subsided, thank goodness! I am a bit sore from the surgery but, I am sure in a few days I will feel good again. I was beginning to feel normal again and now I am limited until I heal up. Grateful for my taste buds being back to normal and some of my strength returning.
Ladies if we could just go back pre cancer. If they would/could have told us we were at risk or something, I would have removed them in a skinny minute. Just thinking....just saying. Shouldn't all women be tested early in life to see if we have 'the' gene, it would have to be cheaper to remove them than to pay for the treatments or even worse for women to die from this. Just thinking.
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PoseyGirl, but it is according to my PT, spondylos can be painful she said to me and it is common to have muscle knots there, nervous breakdowns can cause that thorasic spine locks. I am doing daily exercises to unlock it, PT once a week, I did both X-ray in August, and bone scan two weeks ago, in both cases the report came back telling that there some worn parts on the bones which is common for our age they said, and then I have this spondylos too. Do no work yourself up, my heart was breaking when I red your post, I know exactly how it feels, let us wait until the scan and the results. I am holding my thumbs. Hugs,Cherry
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deni1661, great news that you are done, you must feel such a relief, it is a big milestone
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Thank you all for suggestions, got up in the morning, still sore everywhere, it is time for the next shot. I went to my local care provider for the first one and the elderly nurse, this kind that likes to tell people what to do, showed me how. I believe I annoyed her, she said these shots were easy to do, but I said how would I know? She said that diabetics are doing them and I said that I was not one, she then asked whether I red the instruction and I looked away and shrugged my shoulders. Just thought that for a shot worth over 120 Euro of taxpayers money they could at least show me how to do it. I mean she did it and I still did it wrong yesterday, the needle did not pull in when I pulled it off, hope it will work out today.
KimCee, the liver enzymes can be very volatile, something I learnt when our eldest girl was trying different meds for her acne, she did not get to try one at all at first because her values were up, and she was like maybe 17 at a time. The doctor said that sometimes as much as some fat food can cause the values to go up. In a month they tried again and everything was fine.
moody, the majority of women who have bc genes do not get bc according to my clinic, there is a higher risk but it does not mean they will develop it Cherry
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For people getting Pertuzumab, how long typically will it be? From the guideline Vicky posted and my MO, it stops when chemo stops. I ready somewhere in a medical paper that it should be a year. Anyone getting it for a year? Thanks!
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posey - I had degenerative disk issues at L4/5 nine years prior to diagnosis. Enough to cause significant back pain, particularly when sitting. Due to sudden onset hip pain in late 2014 I had bi-lateral hip and lumbar MRI, and a DEXA. My oncologist favors MRI when looking for bone mets, and the DEXA was done to check for avascular necrosis due to Prolia. DEXA was fine, the MRI did not reveal bone mets, but did show increased degeneration in both the lumbar spine at L3 and the thoracic spine, as well as bone spurs in the thoracic. The hip pain was being caused by an injury that I did not realize I had - we had moved DD to a third floor apartment and while I was careful to carry light things due to lymphedema, I made a LOT of trips up and down the stairs. I had a seizing pain down the front of my thigh and stopped for the day, the pain went away completely a few minutes later, but a week later the hip pain started. The MRI showed multiple stress tears in the gluteus medius - the muscle that goes across the hip, as well as trochanteric bursitis and fluid in the hip joint. Intensive PT for the better part of a year resolved this totally, but I had pain for most of that time. I don't know if you can opt for a different type of imaging - either MRI or a PET, bone scans are notorious for showing everything, but problematic in delineating what those things are.
cherry - start taking Claritin (regular, not Claritin with decongestant) or generic loratadine 10mg and see if that helps with your pain. Loratadine, while an allergy antihistamine, is thought to relieve the edema that build up in the bone marrow while it is generating new white blood cells. People have found that combining loratadine and Aleve (naproxen sodium), which is a longer acting NSAID, to help with pain from the blood cell boosting injections.
whywhy - Perjeta for 6 cycles is standard for early stagers, generally those receiving it for a longer period are node positive or have some other additional risk factor, and I have not seen many who have continued for the full year. As with any of these decisions you have to weigh risk versus reward, so your oncologist should explain what is best for your individual situation as none of these treatments are without potential for collateral damage.
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Thank you SpecialK, I only saw one sort of Claritin at the pharmacy, the one you use when you are allergic, I will talk to my clinic tomorrow, otherwise it got a bit better compared to this morning Cherry
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