Chemo group starting December 2014
Comments
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Hi SpecialK - Yes, I agree with you about the hgb...I had suggested this to the FB group of gals, and one replied that her values were normal, yet she was still struggling with pain/fatigue. My hgb has been in the 9-10 region, and at 7,500 feet above sea level - that is quite the toll on me. However, these past two days have been extraordinarily difficult and I still wonder if there is not another physiological process happening - on top of the hgb issues. What do you think?
r.
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akita - I would imagine the altitude is not your friend right now! I think because chemo has an effect on all soft tissue there is impact on muscles, and that is compounded by the lower Hgb, causing rapid muscle fatigue and shortness of breath. The cumulative nature of side effects becomes more noticeable the deeper into treatment you go - and this is pretty consistent among patients, but it is interesting to me that almost universally among the folks I have communicated with on this board - the 6 week point PFC (post final chemo) is the turnaround point for both of those SE. If the drug is causing a rapid loss of lactic acid it would seem to me that the recovery from that would be shorter than that six week period, and would have happened on earlier tx. This seems to be a SE that becomes worse, or is noticed later in the process of treatment. It is possible that there is a cumulative effect even if it is from a loss of lactic acid, but I don't know enough about the specifics to hazard a guess. You might query your MO on stopping at four treatments - or doing a dose reduction if they insist on six. Most of the people I have seen here do four or six, but the six tx is based on the number used in trial, which is a limited number of patients. Real world MO experience would seem to be more applicable, so I will be curious as to what your MO recommends. I feel like that one positive node, and opting out of rads, will cause your MO to press for all six tx.
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My oncologist said that he did not feel that I needed the six TC's when I asked him for it. I thought since I opted to do TC vs ACT that maybe the six would kind of make up for it. He said that there is no benefit for 6 and also that there actually could be long term side effects from six. This time around with the TC I had alot of aches and pains all over my body. Not sure if it was combined chemo and shot or what, but it caused me to me on the couch for 3 days. I am much more tired this time and its taking alot longer to feel normal, my taste is way off so that I cannot even drink where it feels as though it quenches my thirst. I worry I am not getting enough liquids. I also have some sores on the inside of my mouth and tongue, not too bad, but they are there. I also have pain in my fingers and my toe nails hurt.
I called the radiation oncologist to go over with her again, the GRAY AREA I am in. One node positive, she said she is not recommending that I HAVE to have radiation, its up to me, I can have it if I want. That will make the tissue expander / implant process a nightmare so I hear. They will only radiate the clavical not where they took out all the lymph nodes, as RO said I had a small cancer and a very good surgery so there would be no need to do that area...1 positive and 16 negative. She said that it really doesn't increase the risk of lymphedema by much, maybe 2%. They also will not radiate the inner chest nodes I guess...not sure why not?? But these will be questions that I need to ask. My main concern is what is the percentage that it adds... My oncologist was okay with it if I decided to not do the radiation. I go back to him in three weeks for blood work, then Fermera if I choose not to do radiation. Has anyone been told anything different? If anyone has any info to share that can help me I would appreciate it.
Anyone who did not have any scans before chemo...at what point do they do scans??? What is the whole process after this. I am scared and not having very much support from anyone at home...makes it so difficult.
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akitagirl
I feel the same way after #4, its been the worst.. still have to make that decision about radiation. I read the same article that you did and thought the same thing...maybe not. But I have a meeting with RO to discuss questions and I guess I will make decision based on percentage that it may add benefit. Wonder is anyone is told what percentage benefit it adds??
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SpecialK - Very good analysis! :-) You should join me in the pharmaceutical R&D world, I think you would really love it and be an excellent project manager. Let me know if you are ever interested...
Thinkingpositive - I am sorry to hear this #4 has been the worst for you. I have to say that #3 was my worst one. It's crazy how everyone is so different. When you discuss percentages with the RO, make sure you are asking about "absolute percentages" and how is he/she coming up with that. Is it based on one study of 500 subjects, or is it a meta-analysis review of several studies with thousands of subjects? Also, remember that once you use your radiation option, it is no longer available to you for future use. Hopefully that would never end up being an issue, but something to consider.
As far as 4 vs 6 - I did some lit review today and really have not found any studies showing a difference on disease-free survival between the two. In fact, I couldn't find any studies directly comparing these two options. This leads me to think that perhaps it is the "more is better" philosophy that we tend to have in medical care. Therefore, I am going to make an appointment to discuss this with my MO and try to better understand why they are choosing 6 rounds for me. I admit that I didn't question it in the beginning, as I thought she was following the NCCN guidelines. However, I reviewed those today and do not see a recommendation for 6 cycles. Perhaps she derived it from the AdjuvantOnline...not sure. At any rate, I am leaning towards requesting we be finished with this 4th round.
R.
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Akita
If you find out any info please send it my way!! I am sure when I go back in two weeks to meet with him if I have any info to fight getting 6 vs 4 maybe he would reconsider doing the 6. He felt comfortable with the 4 since he says its the standard with TC. The only ones that get 6 are maybe more advanced breast cancer? Not sure.
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akita - I am sure I would love to do the kind of work you do, but I am pretty sure I don't have the academic background to qualify. PM me your thoughts on that, I would be curious.
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Special K and Akita..... I have to hit the "like button" on Akita's thoughts about your (Special K's) natural strengths in this arena! There is a great deal of information passed here. Special, you seem to pull it all together and spit it back out for the rest of us... "pearls of wisdom"... and I thank you very much for that!! Maggie
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Maggie - what a nice thing to say! I try to post with an eye toward imparting information, while keeping in mind that those reading are at differing points in the breast cancer info gathering, decision making, and treatment processes. Positive feedback about what I say does influence me to stay and keep doing what I have been - if it is helpful to those reading it is beneficial to me too. A personal silver lining, if you will.
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Maggie, you beat me to the punch!
Special K, you do have an amazing talent for digesting complicated information and putting it into language that makes sense. I am always glad to see your posts and especially so as I was initially sorting out my treatment plan. Seemed every time I got confused (one time in particular I remember, you explained the her2 estrogen receptor interaction issue so clearly), you would say something that helped me get it. As a physician that kind of "translating" is a huge part of what I do, so I know it is truly a skill you have well honed! I and I know the rest of us are very grateful that you continue to read and post here so frequently!
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I agree wholeheartedly! Special K is an angel!! Your support and mentoring during this absolutely terrifying journey has made a difference to me!! I have gathered much information through current and past discussions!! Thank you!
Patty
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You guys are making me blush! Truthfully, as I said above, it is gratifying to me to be helpful. The surreal place we find ourselves right after diagnosis, and early in treatment, is an awful place to be and if I am helpful in any way - as ladies were for me - it is the "pay it forward" for me. It is the same reason I chose to participate in a Her2+ vaccine trial - I felt the need to help advance the science that may prevent recurrence in Her2+ patients, and move the immunotherapy treatment concept into the discussion for all breast cancer patients.
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SpecialK - I may have asked this before and if I did please forgive me, but did you have radiation? Any info you can give me I would greatly appreicate. I am meeting again with the RO to ask questions, since I am in that gray zone and they are not saying that I have to have it. Are there questions that I should be asking? Thanks for the help.
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Does anyone know what to use for a very dry itchy scalp? I had my last TC Feb 5th and am hoping it will start to grow back soon. I have been wearing hats (sometimes two at a time when it is very cold) and I think this may have contributed to the dryness. I have very dry sensitive skin anyway but this itchy head is making me crazy. I already us a 2 in 1 head and shoulders and baby shampoo alternating every other day. I was using olive oil but am afraid it may clog the pours and prevent my hair from growing back. My mother bought me some baby oil but I am afraid it will do the same thing. Does anyone have any ideas?
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Oops that should have been pores.
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Interesting about the 4 vs 6 cycles. Of course, with my SEs, I really wish I could skip the last two cycles... BUT... I'm already doing reduced taxotere (not that it reduced the SEs at all!!! I figure I might as well be getting the whole dosage considering that I probably wouldn't be that much worse off). I wonder how the reduced Taxotere equates with the 4 cycles only?
And I agree with you all that SpecialK is just an invaluable resource in all these discussions! So much knowledge... and it really does help so much. This crazy world of bc would be so much worse without her input! --- Thank you so much for sticking around to help all the floundering newbies, like me, SpecialK!
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My scalp... actually all my skin, has been dryer than usual these days. I've just been using a lot of lotion on it... Not sure what I'd start using on my head if I was trying to get my hair to grow back, since I'm still losing it and won't be growing any back for months, probably... *sigh*
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Thanks again everyone! So happy to help!
Wheely - Maybe try Argan oil for the itchy scalp. Moroccan oil is also in hair products so that might work too.
Thinking positive - I did not have rads for two reasons - excellent margins due to mastectomy and complete axillary clearance surgery. I was treated in the time period when a positive SNB meant rads for some and ALND for others, there was a trend forming at that time to change to rads and do less ALND. Due to being Her2+ my BS and MO both insisted on removing the levels 1&2 nodes - a separate surgery after BMX, my SNB was initially clear in the OR, positive in the lab later - good thing as there was a much larger positive node hiding there. Did not appear enlarged on palpation, never showed on imaging. I would ask about whole vs partial breast, axilla added since you had a positive node, regular course vs Canadian protocol (same grays but shorter duration), and prone position to minimize heart exposure since this is left side. Ask about skin care. I can provide a skin regimen used by another member that I have shared - all who have used it have done very well with it. Also ask about percentages of benefit provided - radiation, like all treatment, includes risk - so you need to know by how much it improves your situation.
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Two cents on Rads and Her2+... then a question
Rads -----> Really wish older posts of mine were easier to find on this site.... I posted a more lengthy paragraph on this in December 2014... In essence the Head of RO at UNC-CH spent a great deal of time discussing partial vs whole breast rads approaches after lumpectomy with me and my better half. Boiled down, he isn't convinced as of 12/14, equivalency for lump/whole breast rads = mastectomy = lump/partial breast rads.... He spoke to margins and the fact that lumpectomies during the time frame of many clinical trials used as the basis for lump/whole breast = mastectomy, removed significantly more tissue than is current practice. He is waiting for new findings with much smaller margins before adopting partial breast rads (unless there are secondary health issues in the person under consideration). I am in good health, with Her2+ (3+)... he insisted on full breast rads for a four week cycle. The cycle length was based on my size (120 lbs, 5'3"). For once I am happy to be short!
Question for Special and Others... Ferritin blood serum levels... Have you had it measured? I was slightly anemic last summer and had a ferritin level of 68 microgm/dL. My nutritionist repeated the test last week and it is now 450 (1.5 times normal upper limit). Ferritin doesn't appear to be monitored during chemo (as best I can tell). So I am asking if anyone has experience with this....
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TTfan......I'm anxious to hear the results of your tests too. I had to stop Hercepton 3 months ago to see if my heart readings would go back to normal. I had my echo last week and got my results yesterday.............my readings are back to normal but he is discontinuing the Hercepton. He is now sending me to a cardiologist because my heart murmur has gotten worse since this mess started. He isnt sure why, but needless to say.......I'm terrified. I wasnt this upset when I got my cancer diagnosis . I feel like this nightmare is never going to end
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Maggie - sorry - I did not see your question regarding the ferritin. I am thinking of a couple of possibilities, could be from inflammation caused by chemo. Or, could be from irritation to your liver - chemo drugs are generally filtered through the liver or kidneys, which is one reason function is monitored with a CMP regularly. Do you have a recent ALT number? It would show your liver status. If the liver is irritated it may release its stores of ferritin into the blood which will reflect an increase in serum ferritin level. Are you supplementing with anything that could raise your ferritin level? What does your MO say about the increase?
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Thanks Special... Had labs prior to infusion at UNC yesterday. Added ferritin (had not been tested there) and results were 71, in my "normal" range. So not sure if the early Feb test by Solstas Labs was an outlier, but real, or an artifact. Have requested we do one more repeat in three weeks. Inflammation due to chemo has been the general thought as an explanation of the higher levels. My view of ferritin is that a "true" level of 450 taken 2/4/15 and run by a certified lab should not be 71 on 2/17/15 and run by a different, but certified lab. I have not considered liver "shedding", but have to do mental calisthenics, of some sort, to create a pathway out of the blood for that much load in a short 13 days!!!! ( ALT did drop... 56 (1/27/15) back to 32 (2/27/15), was 30 (1/6/15).... making the liver irritation concept something to ponder some more! Maggie
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So Special... think I have answered my question....
Elevated ferritin levels can either mean excessive iron in the blood or an acute inflammatory reaction.......
So after reading 5 or 6 abstracts and several full reports, the fact that serum ferritin level increased while available iron remained stable, is suggestive of the acute inflammatory response and not an iron load. C Reactive protein also measured higher at upper end of normal (2.9 mg/L 2/4/15 vs 0.8 mg/L 2/20/14), which was also statistically correlated with serum ferritin increase as an acute agent.
Thus I come to the conclusion... if NOT an iron function, then no need to find a mechanism to adsorb iron or secrete iron... and the serum ferritin measurements could make sense.
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The elevated CRP would be a good indicator of inflammation, so that could be it. I would keep monitoring the ALT/AST just to be judicious.
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Hi ladies,
Just finished my 4th and last treatment of Cytoxan and Taxotere.I wanted to take a moment to thank you all for the good advice, suggestions and hopeful words. I don't post much, but follow all the posts. One episode of this journey is over, next is radiation.looking forward to hair growth now.
Good luck to all of you and we will win this fight.
Thanks.
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Congrats blueflowers on finishing. I too finished two weeks ago. This was the toughest for me, I am still not feeling great. How about you?
Good luck to you !
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ThinkingPos… - My last treatment packed the most punch, I was so tired right after coming back from chemo. Still taking things slowly and hoping to get better in a couple of days. Just glad to be done !!
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Congrats on getting through the chemo, both of you! I hope you have very quick recoveries!
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Hello Everyone!
Round 4 and final round of chemo is finished - I am on day 16 and feeling not to shabby. My toes hurt...as do my finger nails. With my third round I ended up in hospital for 5 days with a fever of 38.9 and a mystery infection. Still don't know what happened.
I had a CT scan last Tuesday to get all set up for radiation...three little tattoos and waaaaLA! Now just waiting for the schedule.
I hope everyone here is doing good...it's been pretty quite...I hope it means we are all busy with our lives again!
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cjfishergal - Congratulations on finishing chemo! I know it is such a relief to be done with that phase of treatment, sorry you had some bad side effects but you are done with it! I started rads last Thursday so far so good. No tattoos for me, they just redo the markings each day. I am 2 down 28 to go.
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Wow, no tattoos? That sounds very civilized!
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