TRIPLE POSITIVE GROUP
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Dragonfly--seems unbelievable, sorry to hear. Got my period like clockwork last week. Damn. I'm on Day 12 of first TCH infusion and feel tired, wiped out, and slow. My allergic reaction (itchy rash on hands) to Tamoxifen has calmed down on steroids, which made me feel good, but now my blood counts are very low. I got a shot of Neupogen yesterday and am taking Alleve and Claritin, per advice. My knees, head and legs ache a little. But what's really getting me is the wiped out feeling, fatigue, fuzzy head, chemo brain, I'm not sure what to call it. I can't do much but nap or sit. This is worse than Day 3!
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NancyJill: Treatment #1 was the worst for me. I had Neulasta after my WBCs dumped after #1 too and then each treatment after and that kept it normal for me. What a godsend Neulasta is and I was one of the fortunate ones who had no side effects from Neulasta. My reaction to Chemo #1 was horrible pain in every joint in my body incuding teeth, bones in toes...you name it. You'll feel better in a few days!
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NancyJill - Are you taking Tamoxifen and chemo at the same time?
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NancyJill, I think you mean taxol or taxotere rather than tamoxifin?
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I'm thinking taxotere too and not tamoxfin. So easy to get all these drugs confused.
Hi SpecialK: Starting to cool off a bit here in Florida! How are you doing?
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Dragonfly, there are some posters somewhere on this site with significant shoulder pain related to shoulder. Something about frozen shoulder...you might search around for it. Once lady went through tons of testing before they decided it.
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Thanks fluffqueen01, I had an MRI today and I'm waiting on the results to figure out what's really going on. The anti-inflammatories are definitely helping but there is still pain and stiffness. I can't believe I'm having a problem like this at 42 and I find it more than a coincidence that it comes after so much treatment for BC...
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Oh, I hope you feel better soon dragonfly1!
I am 48 and feel like I"m walking like a 90 y.o. My knees and toes and finger are all so stiff. At times, it is almost impossible to walk up steps. I'd be blaming this on tamoxifin, but I haven't started yet. Finished chemo almost 12 weeks ago and was not experiencing this during chemo. I think it must be Herceptin, but I've been on that for over 20 weeks, why is it just starting? Hope it gets better soon.
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kay1963 - I really had no stiffness, bone pain, achiness on TCH (muscle pain toward the end) but since Herceptin alone (now with Femara) I have a lot more. The first H alone I had so much hip and leg pain I couldn't sleep. The onc nurses didn't think it was Herceptin, they thought leftover SE from chemo - I don't think so - I think it is the H.
dragonfly - hi triplet! Sorry about the shoulder deal - is this on your rads side? Sorry, you may have answered that some posts back. How long do you have to wait for the MRI report?
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SpeciaK Hi Triplet! Yes, the shoulder pain is on the Rads side-no coincidence in my opinion-seems that the area might be weakened. They say my doctor should receive the MRI report in a few days. I also have had increased joint achiness with the Herceptin alone. My hips ache so badly that they wake me up most mornings. I'm guessing it's the H as the only other thing I'm on now is Tamoxifen and I've only been taking Tami for about 6 weeks.0
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Ladies, you are so right, I meant Taxotere, not Tamoxifen!! Thanks for keeping me straight. I don't know what my MO will choose next week instead for me to try! Since my Neupogen shot on Friday kicked in on Sunday I feel much better! Much!
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dragonfly - I am so sorry about your shoulder - you should be in the getting back to feeling good stage right now! Not fair! How fast are you getting your H? I had them slow mine down to 90 minutes (per omaz - thanks!!!!) and I have less pain. I have mixed emotions about the end of H - it is a security blanket of sorts but I think it is also causing the aches. Femara seems to be adding to the mix but not that much. It will be interesting to sort it all out when we stop the H only tx. How are your hands doing? Better I hope!
NancyJill - Glad you are feeling better!
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SpeciaK Yes, I get the H over 90 minutes as well but still have the aching joints-it will definitely be interesting to compare how we feel after we finish H in Feb and you are on the Femara only and I'm on the Tamox only-less variables to control for:) My hands are the same (but not any worse). They really only bother me at night which is when they tend to go completely numb and it sometimes radiates up as far as my shoulder. I still sleep on my side which isn't helping but I can't seem to avoid it...On a very positive note, I just had another MUGA scan and it had not dropped. My baseline MUGA was 73, three month MUGA was 68 and this one was 73 again-what a relief!!!0
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I have the joint pain also now that I do only herceptin and tamoxifen. Based on recommendations from here, i had my onc slow it to 90 minutes. Last time was the first. It helped a fair amount. My onc also said I could go back to weekly if I wanted, which I really dont. He thinks it is definately the herceptin and that I am not his first patient to tell him that.
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Wow fluff,
If I ever get back on Herceptin I think I'll ask to slow down my infusion. My joints are killing me. I was getting it in 28 minutes flat.
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tonlee - geez, you are a speed demon! The first time I received it quickly and had awful aching, then slowed it down and it helped tremendously.
dragonfly - I just had an echo last week and it was seeming that my EF had come down more than the difference between 1st and 2nd echo. Then it turns out that while I am on the table the supervisor looks back at my last one and says the guy measured wrong (this was the poor freaked out young troop at the base hospital who was doing the echo on the side that had the TE removed) and gave me too high of an EF so it didn't really come down by that much. Now I am wondering if my first one was accurate because it would show a drop but still be in the safe range.
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Omaz - Thank you so much, it worked. Sorry for the delayed response. Good news, I had AC chemo and so far it has gone better than the TCH. Thank goodness.
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SpecialK: Reference the MUGAs/Echos....my cardiologist told me that if these tests aren't read by a cardiologist, you might not get an accurate reading. My MUGAs in Vegas at the Cancer Center, to my knowledge, were not read by a cardiologist so I'll make sure the next one is.
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MRI results of my shoulder came back today and the diagnosis is frozen shoulder. Next stop, Orthopedic doctor for a possible cortisone shot so that I can tolerate physical therapy. When I googled frozen shoulder I noticed that a lot of the results show it is often associated with breast cancer surgery. I suspected that it was more than a coincidence and had to be related in some way...
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My sister was just diagnosed with a triple positive tumor, and one positive knode 2 weeks ago. She is undergoing a double masectomy in 1 week. Keep the postings coming ladies, I read a lot but do not post. I am so glad to here from all of you. You are all in my prayers...
PS . I HATE CANCER
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Jenniferky: Good luck to your sister. Dragonfly: so sorry, but lad you have a definitive answer finally. Getting my head shaved in two days--hair coming out. Feeling good with 5 days left before 2nd treatment (TCH).
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ArleneA - My echos are done by a tech and then forwarded to a cardiologist. The cardiologist is a non-military doc here in Tampa and when the base cardiopulmonary office gets a half dozen or so on disk they send them to him and he reads them. The supervisor was faulting the previous tech's measurement technique because he was looking for a reason for the drop in number. I don't know if the cardiologist will notice this - not sure if he has access to the historical or not.
dragonfly - glad you got the MRI results and that it is a mechanical problem that can be addressed. Hopefully the cortisone shot will give you some pain relief too.
Jenniferky - sorry about your sister, we hate cancer too!
NancyJill - keep hanging in!
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SpecialK: You get Echos versus MUGAs. I had one Echo but when the palps started, they wanted me to have the MUGAs because they say they are more accurate...who really knows. I much prefer the Echos because no crap going into my system. My Echos were done by a cardiologist.
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weird, i was told echos were more accurate because they computed the ef ratio themselves vs. a muga which can be interpreted differently depending on who reads it. a cardiologist always reads and writes a report on my echo.
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That is weird Kay. I had an ER cardiologist and mine tell me the MUGAS were the gold standard for EF, so who really knows. For the most part, I just do what they tell me is best. So far, things are settling for me but still have 10 Herceptin TXs to go.
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Onc told me that they do ECHOs as long as everything stays ok but if there is a problem they do a MUGA.
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Must depend on the Onc (and maybe insurance) as well because mine has been doing MUGAs since the beginning (3 so far) and I've had no problems. My Onc also did a PET scan early on while others won't do it unless there are symptoms, etc. There seems to be such variance...
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dragonfly - There does seem to be a lot of variability. That's one thing that really stands out about our treatment. How is your shoulder?0
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My shoulder still hurts-worst at night but better during the day with the anti-inflammatories. Why does everything seem to get worse at night and disrupt our sleep? It's not funny but I do laugh at how ridiculous this is becoming-neuropathy in my hands, hot flashes at 4 am and now a frozen shoulder-major sleep deprivation. I was given the prescription yesterday for PT so I'll schedule that ASAP and hope it starts giving me some relief. Thanks for asking:)
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Me too dragonfly...only MUGAs except for when the palps were so bad and I went to the ER (twice) and they did Echos. Again who really knows.
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