Anyone starting chemotherapy in July?
Comments
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I didn't think my 3rd AC was terrible. I had no nausea at all.I took a few nausea tablets anyway but didn't need to. I also started taking heartburn medication this round and also had no heartburn at all. I did seem to take longer than normal to feel more like normal but I was also taking antibiotics for an infection that my body was probably trying to fight.
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Hello ladies
Well I also found my 3rd AC tx to be very hard, it hit me like a rock. I got a bad side effect from the Neulasta Shot, where the pain was unbelievable and it felt like someone had punched me many times that rupture my lung. (I had the episode Sunday and Monday), I went to see the nurse practitioner on Monday afternoon and she did confirm it was bc of the shot, I told her I'm not having that shot again and to figure out something else to give me. At least she did agreed with me. The fatigue has hit me hard too. And now I'm having pain again on my surgery site ( where they had to removed the tissue expander due to infection)
And I have one more of the AC tx to go. I just hope the weekly txs are easier.
Hope everyone is feeling good and able to handle all of the side effects that come with getting better.
Hugs
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Boricua: so sorry you have so many really tough side effects from the AC. I hope they can give you an alternative to Neulasta if need be to raise your white count. I'm optimistic that you'll find the weekly Taxol easier to deal with. Sending you healing thoughts across the Internet for you to feel better and for good luck with your final AC. (( ❤ ))
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Roofcat59, Thank you!! Hope you are doing good, and all the ladies in this group.
I'm so glad I'm able to come here and vent!!
Hugs
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xxyzed I hope your 4th and last AC goes well, or has gone we ll, it seemed like you really took it in stride. I'm sorry that you've been feeling some depression. I can imagine after all the loss you've experented your own cancer can be extra traumatizing for you. Sending you hugs and marveling at your strength and courage.
Boricua I honestly don't know how you do it. You have such stamina! I was working maybe two to three days a week and staying put at my desk a whole lot on AC. I'm sorry you felt so bad with your third AC and the shots hurt you so much, did you take Claritin daily? I think that truly prevented me from having anything but minor pain from my shots, it seems of have worked for so many people.
Roofcat59 that picture you posted about a circle of women brought tears to my eyes. It's so powerful that we can come hear and be that circle for each other. I honestly don't know where I'd be without this forum.
C Whitney what a huge pain about your period. I thought it was more normal to not have any period, I haven't for two months. I hope this doesn't continude to be a problem for you, and congratulations on the halfway mark.
Scared67 my 4th AC was the worst, it really built up over time. Sorry you had such a bad time, I hope it's gotten better and this means your done right?! Congratulations!
Natalie I'm sorry it was similar for you on your 3rd. That's where it started to get bad for me too. I'm glad you took some time off for yourself and your body. You're almost there!
Well, today I had my first taxol. Had a blood draw and check up first but now only have to do that every three weeks. The onco said I would have no nausea (which I completely took with a grain of salt). I was right to because I did have a bit of queaziness and took both a Zofran and comprazine as soon as I got home. I passed the allergic reaction test, you are supposed to take a zyrtec beforehand, and they gave me another antihistamine pill and the steroids to prevent nausea but this time it was to prevent allergies, and watched me for ten minutes to make sure I didn't have a reaction, which I didnt, so taxol is a go and I got my full infusion. I can't believe the difference. I am certainly not turning cartwheels but I would come home from AC just feeling heavy with poison and nausea throughout my whole boday and it lasted for days. Today my whole body doesn't feel nearly as affected. I am tired,with some slight nausea that the drugs knocked out, just a little achiness, and the onco said in 3 days I might have more body aches. It's so much better than the AC that today I am happy and relieved and puttering around---unthinkable with AC. I took today off and will take tomorrow off too because I can and I deserve the rest but if I had to I could probably work tomorrow, with AC I was missing 5 or 6 days of work from feeling so terrible. I don't want to get too excited since I know of know the affects are cumulative but today this feels really manageable. I am so happy I'm done with that blasted AC!
I got L Glutamine, vitamin B6 and B12 and lipoid acid for neuropathy prevention. I got biotin to help keep nails healthy and tea tree oil to prevent any infection in my nail beds should they get loose. I'm going to stick with dark nail polish. I've asked a few different nurses about icing for taxol for neuropathy and the concensus at my infusion center is it doesn't seem to really help for taxol but they support me if I want to try it. I think I'm going to see how it goes without, I've heard lots of people say it helped but I've also heard lots of people say they were fine without it. Almost nobody in my local support group iced and seemed ok. Also for some reason I get a hospital bed for taxol, so comfy and with heated blankets, I suppose that would help with the icing but it was also so warm and cozy! I'll keep you all posted on side effects and if what I'm doing is working to precent some of them.
Sending healing thoughts and hugs to all of you.
Lindsay
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Lindsay - so glad to hear you are done once and for all with the "red devil" and had a pretty decent experience with your first taxol infusion. I am not icing at all since it is not commonly done around here and so far have had only mild neuropathy. I've just started to notice a little discoloration in the nail beds of both of my big toes, so I'm betting if I lose nails it will be from there, but I really hope not! I had my 5th infusion this past Wednesday. I am glad you liked the picture of the circle of women - when my friend sent it to me my eyes also stung with tears. I am also so happy we have this virtual circle of women supporting each other on the discussion forums.
Sending everyone wishes for a good week. ((❤))
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I had my 4th and final AC treatment yesterday. The infusion went fine. Now to see what side effects kick in. Normally it's a lot of back pressure from the neulasta and a lot of lazing around for a few days. I also had some neuropathy start in my feet last treatment which my MO said isn't possible on the AC chemo so I am somewhat nervous for what the dose dense taxol will bring me in terms of neuropathy then
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I am just about half way through my six cycles of chemo. I am receiving TCHP every 3 weeks and Taxol every week. I had my third TCHP this past Friday and am feeling pretty worn out. I have a hard time eating anything for almost a week after receiving all four drugs. My tumor showed as 2.1cm on the MRI so they put me in Stage 2 and did chemo first. I will get a break when I am done then surgery. I cannot wait for the chemo to end! I am using cold caps and still have my hair though it needs to be colored! The caps seem worth it to save my privacy but they are a real pain and need to be worn for four hours following the taxol infusions and i just want to lie down and sleep. I am taking lomotil for diarrhea which is helpful but i generally have food aversions not really nausea so nothing really helps. Ugh! All things considered I appear to be handling it well and my tumors have disappeared so at least I know its working!!
has anyone started the Herceptin only? i am wondering what the side effects are like if any.
Dx 6/22/201 IDC, Left 1.7cm. ER+, PR+ Her2+
Surgery - mastectomy left side not scheduled yet.
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Hi gang,
My third round of FEC threw me for a loop. The first week, I awoke each morning and counted the minutes until 9 p.m. when I could take a sleeping pill and knock myself out again. On day 8, I started to feel much better.
xxyzed: I, too, am so sorry for what your family has been through. It is too much for anyone to bear, especially young children. I send you and your kids my best wishes and much strength! We have the same type of tumour: er/pr negative and her2 positive. As I understand it, this type is extremely responsive to Herceptin. When I feel worried, I google "Dennis Slamon" and read all the accolades he has received due to the development of this wonder drug. Doing so helps to allay my fears. Are you receiving Perjeta? Has your M. O. recommended icing your hands and feet during the taxol treatments to reduce the likelihood of neuropathy? I love the photo you posted of your beach, but this Canadian girl wonders if the season can rightly be called Winter when flowers are still in bloom.
HelenNWZ: We are on the same protocol, but in reverse order. I see that you suffered from heartburn while on Docetaxel. That was by far my worst symptom while on FEC. You may want to ask your M.O. for a medication that reduces the amount of acid your stomach produces so that you can take it should you begin to experience acid reflux while on FEC. I put bricks under the feet of my bed so that my head was elevated (I read online that there must be 8 inches of elevation for this to be effective). I also stopped eating at 7 p.m. each night. The pain was quite excruciating, but it got better after about 10 days.
To those who are working throughout treatment (Natalie68, Boricua), my hat is off to you! You are such troopers!
dccdancer: I have read that it is rare for people to experience side effects from Herceptin. However, there are some who do, and it seems to be joint pain.
I am now halfway done chemo!! The light is at the end of the tunnel now.
Best wishes to all,
Stephanie
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Thanks Stephanie and others for your well wishes. I agree that my family has had more than enough bad luck over the last few years. I had to laugh at the flowers in winter comment. We are coming up to spring so all the wild flowers are starting to sprout making for some gorgeous photos.
We don't get government funded Perjeta in Austral until the cancer has metasticised. My first taxol treatment doing dose dense goes over many hours so it wouldn't be practical to ice for so I haven't bothered asking if it's allowed. Depending on reactions if my subsequent treatments will be shorter duration I'll look into it then.
Given how low I had been feeling I was pleasantly surprised that all my blood counts at yesterday's appointment before chemo were good. The only blip was low blood pressure when I'm normally a 120/80 girl but not a big enough blip to cause concern for anyone.
I hope everyone is making it through the long trudge and is doing as well as possible with where they are in their treatment cycle
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Stephanie, congrats on being halfway down. I am too and can't wait to ring that bell! I will still have a year of herceptin but from what I hear, the side effects are small. I am dealing with post mastectomy pain in my armpit that is really annoying. It's a burning feeling that only ice or heat will help. My oncologist is not worried so I am trying not too. They did take out 16 nodes which I still don't understand since I was node negative. My breast surgeon went nuclear when she found a few stray cancer cells in one. Anyhow, I have a feeling I will be dealing with this for a long time. Prayers to all!
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hi ladies, I had some excellent news yesterday. I had an ultrasound. After the 3 rounds of AC the smaller 15mm tumour has gone! The bigger one that was estimated to be 23mm is now estimated to be 11mm - so half the size. And the malignant node is now 'looking' normal. The AC is working which is such a relief. I talked to the onc about how yuck the side affects were and he has reduced the last dose and added in steroids for longer. I'm still feeling pretty seedy after two weeks. I feel somewhat better about the 4th dose next week now, I was so worried.
I'm glad I haven't had to have the 'n' shots, they sound pretty awful. My bloods so far have done well coming back up but then I've been in the 3 weekly not the dose dense.
He chatted to me about a trial that's taking place for a new drug called palbociclib They are running a trial for people who have had inoperable tumours and have had chemo pre surgery as apparently their is a higher risk of the cancer returning. 😖 I guess IIIc is pretty darn close to iv given it was so locally advanced. I also assume we won't actually ever know how many nodes were actually affected either. I'm guessing they take them all (?). Nothing like keeping you grounded. It's taken at the same time as the estrogen suppressing drug. I've been reading it up and apart from the fact the that there is the trial group and the placebo group 😐 I have nothing to lose taking it as it sounds like it's already used in stage iv and is clearing tumours. It seems to close down another channel the cancers use to metastasise. Sounds promising and he said it was an impressive drug. I'm rather scared about the future so I fully expect to jump in and hope to get the drug.
Reading thru some of the taxol posts on other threads I see that some peoples hair starts growing back! That sounds exciting!
As always, thank you for all the well wishes and my thoughts are with each of you as we keep soldering on.
Natalie
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Natalie, thats great news! So happy to hear the chemo is working!!!!
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Natalie, that is great news!!! Woo hoo!!
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Tomorrow is TAC #3 for me. Halfway! While I'm not looking forward to it, I'm excited to be halfway done with this part of the process. My port still feels a little tender, but hopefully will make the whole process easier. My vein from #2 was in the back of my hand and it's still swollen, purple, and achy. Hoping to up my water intake even more since it made a huge difference for me last time and then to keep up the fluids (for me that means coconut water) since I have to work (I teach childbirth education classes) on Sunday. Must feel good enough to talk for six hours straight by then.
Fun fact: Anything I shaved, like my legs, hasn't grown back.
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I know it's not a milestone you ever wanted to pursue, nye1980, but congratulations and good luck tomorrow.
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Natalie68 - such good news about the success of the AC chemo in shrinking your tumors & that your blood cell counts have been staying up there! Hope you get into the actual drug arm of the clinical trial. Best of luck to you as you "keep up the good fight".
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Hi All,
Congrats, Natalie68 on tumour shrinkage. It is so encouraging to heat that your chemo is working so well.
Nye1980, my veins are also sore (particularly the one in my inner arm, at my elbow. Who knew that a vein could ache on its own, unprovoked!) I took tylenol gel caps and that helped.
I go for chemo tomorrow (my first docetaxel) and forgot to take my steroids this morning as prescribed. BIG OOPS. I had to take one 4 mg dose at 5 p.m., and took the second dose at midnight. Needless to say, it is going to be a long, sleepless night! Xxyzed, I am going to have to set medication alarms on my phone, as you had described in an earlier post. I can't trust my brain any longer. Yesterday, my neighbour asked me how many treatments I had left, and I said "three" but held up four fingers. I really hope that my chemo brain isn't permanent!
HelenWNZ: regarding my earlier post about acid reflux, I was just told that it is the steroid that causes this condition, not the chemo. So, perhaps you won't experience this while on FEC, because the steroid dose is half of that used while on Docetaxel, as I recall.
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Wishing you all the best for your chemo tomorrow Stephincanada. You'll have to let us know how you go. My next one is a new chemo combination as well Taxol and Herceptin and I'm already panicking about allergic reactions and high steroid doses and expected sleeplessness. I don't think you're the first person to forget one of your pre-chemo steroids. In fact I know a good friend who did exactly the same.
I managed to have heartburn with my AC chemo and that was a very small steroid dose so I don't know if there's any real rhyme or reason to any of this.
I hope everyone is doing well. I have bounced back surprisingly well from AC cycle 4 and am back to pre-chemo and surgery levels. Fingers crossed it stays this way and the next regime treats me kindly.
Fantastic news natalie68. Good to see the chemo has done what it was supposed to
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Xxyzed: I had a much easier time with the steroid this round. Someone told me to eat a lot before you take dexamethasone, and that oatmeal is especially good at "coating" the stomach. I ate a big bowl of the stuff before each dose, and didn't have any trouble. I took half an immovane sleeping pill (zopiclone) last night and slept about 6 hours. I also am not feeling any acid reflux yet.
Cwhithey: your posts some time ago about exercise really motivated me. I bought a fit bit and have been walking regularly. Today I found out that the epirubicin chemo (which is known to have a cardiotoxic effect) did not damage my heart at all. My heart pumping scores are the same as they were before I started chemo. I am chalking it up to the regular walks, so thanks for the inspiration! As for the removal of your 16 nodes, the silver lining is that you will always know you did everything you could to prevent the cancer from ever coming back. I hope you can find some comfort in this, even though I know that the node removal may cause you hardship in the future. I am sorry about that, but wish you a long and healthy life.
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Stephincanada, you made my day today! I am so happy that exercising is helping you. And to hear that your heart is strong and healthy made me smile. Keep it up! All the research I read says how beneficial it is to all of us physically and mentally as survivors.
I hope everyone else is hanging in there. Praying for you all!
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We seem to be pretty quiet in this July chemo group lately. I had my first Taxol and Herceptin last week. I was told by my oncologist that the AC was the hard one and the Taxol/Herceptin about half as hard then the Herceptin alone would be easy. This was not true. I got knocked for a six with extreme bone pain from my hips to my knees and the tops of my feet and aching leg muscles. I could barely hobble from bed to the toilet and could not get it to a comfortable level with normal pain meds, heat packs, baths and showers. This went on from days 3 to 6 with 4 and 5 being the worst. Fortunately it passed and I am only needing pain medication to sleep at night now. I also got a rash across my face the day after the chemo which was quite sore around my eye area but has now mostly cleared.
I also had my first Herceptin only on Friday. So far I am fine but the pain didn't start until the Sunday with the combined treatment so too early to tell just yet.
I also got my heart scan results back and am pleased to find out the AC didn't upset my heart with irreversible damage and the LVEF number is only 1 down from where it started. I was wrapped.
I'd love to hear how everyone else is doing. Stephincanada were you able to get access to Perjeta
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xxyzd, I was thinking the same thing about us all being quiet. I am sorry you are having a hard time with the Taxol and Herceptin. I too have bone and muscle pain after my infusion but it goes away after a few days. What helps me is to continue walking even when I feel like sh*t. Maybe that would help. Taxotere (what I'm on) seems to make me feel worse with each infusion. I will have my 5th out of 6 treatments next week and I am counting the days. I am sending prayers that you will get through this. I got my genetic testing back this week and I have the brca2 gene. I guess that explains why I have BC when no one else in my entire family does. My mom died at 49 from lung cancer so she was never tested. I was extremely depressed about it, the fact that I have been high risk and never knew it, but now I see it as an opportunity to remove my ovaries to avoid ovarian cancer. I had a scan done on Friday and get results on Mon. I already had the double mastectomy. So much to process and wishing genetic testing would be offered to anyone without the huge cost when there is no family history!
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Hello ladies
I'm sorry for those of you that are having a hard time with the treatments.
A lot happened since my last post. I finished my AC treatment about a month ago, and that one really hit me like a rock. I spent that whole weekend sleeping and when I went to the oncologist for blood work, my white cell were extremely low. That same morning I had an echo to make sure I was fit to start Taxol, well that didn't turn out too good, they found two blood clots in my heart. So I was sent to the hospital for a more in depth test, and yes, it was confirmed. I was admitted to the hospital and put on blood thinners. Next day, I had a CT scan and they found a small blood clot in my long, all of that is due to the medi port, and because I have a blood clot in the medi port, it can not be removed. So now, I have to be on blood thinners for the rest of my treatments.
Last Friday, I went to my onco app, and the first taxol treatment due to have white blood cells too low. Yesterday, I went again to my weekly appointment and the Taxol treatment was cancel again due to an infection on the mastectomy side. So now I'm on antibiotics for seven days.
This has been a roller coaster for me. My onco took me out of work until I finis treatments. This is getting very frustrating for me, since this is not what I had plan. My plan was to get on with the treatments,work during treatments and finish and then put this behind me.
And because they can't access the medi port, they have to use my arm, and that doesn't bother me but it seems that they can't find a good vein and when they do find one is on a spot where it hurts.
Sorry for venting and thank you for listening.
Hugs to all and hope everyone manage those nasty side effects.
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Hi All....I agree this our group has been quite for awhile..
Boricua63 - I'm so sorry for what you've been going through - it sounds like you are in good hands as they are being very throrough... We *will* get through this hell. And, it is hell. (((((HUGS)))))))......
As for me - I too have been experiencing pain (very sore upper leg and butt muscles and sore lower back) with the Taxol and food having zero taste. And, extreme tiredness. It's usually the WORST Day 2 evening thru Day 4. Then after day 7 - I feel pretty much like myself. But, wake up in the night and can't go back to sleep - I think I am still trying to deal with the fact - that I have BC.
I had a repeat CT scan (on Wed) to look at a lung nodule (that was there last time - on the first CT - 3 months ago) that they felt was just an "incidentaloma" which means it's probably something left over from a previous lung infection (I had a lung infection a few years ago) or just there for no reason. Anyway....they said the CT results were good and the nodule is stable and still the same. BUT, I have to have another CT in 3 months - just to make sure it stays stable. Ugh.
I don't think I will ever adjust to this or feel emotionally comfortable - again. I'm a huge grouch most of the time and my 9 yr DD pointed out the other day that I "don't laugh anymore". It's been hard to laugh or enjoy anything. I miss my hair and the way my body used to be - healthy and nice looking. Now I can't stand seeing my upper body in the mirror. I hate my portal and the ugly replacement expanders. Sorry for my vent. I have to go to my DD's friend's bday parties right now. And, am not looking forward to all the stupid small talk with people whose lives are much better than mine. Sorry I am feeling sobitter right now.......
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Hi Cwhitney - I did find the pain better managed when I was moving and distracted. I think that's why it is so much worse at night when you are lying still. I am not happy to hear you say it got worse with each infusion. I also have neuropathy on the very tip of my fingertips from the 1st treatment so I am very concerned how that is going to progress. Mine is dose dense not weekly so only 4 cycles in total. 3 more to go.
Boricua63 - my husband had every bad side effect possible with his chemo. Even ones his haematologists said were possible but they had never seen. It has meant that I don't have long term plans for my treatment. I take each step of each day as it comes. I know that chemo day means a lot of things going right for chemo to even happen. My bloods need to be good, my side effects need to be within certain parameters, my port needs to be working properly, I need to not have any reactions, I may or may not finish on time to get the kids from school and I may unexpectedly spend the night in hospital. It helps me to think this way and avoid the roller coaster. I am so glad the echo found the clots and they are being treated. Can you get a pic line temporarily to assist with the vein problem? If anything hurts use painkillers. Whatever it takes to get through one moment at a time.
Scared67 - I'm sorry but glad that you are having similar problems to me. Knowing I am not the only one gives me some comfort. I have to laugh at "the stupid small talk with people whose lives are so much better than mine" comment. I know the feeling well but I don't think their lives are better. I think they may very well be walking around with cancer and just don't know it yet. Not bitter and I am happy enough with my chest. My Lymphedema annoys me and I hate having to cover my head to be socially acceptable. I don't look real good right now and I don't really care. Scanxiety really sux. It's just one of those things we need to do
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Well, it sounds like we are pretty miserable. I keep telling myself I'll get through this but there are days that I want to give up. I still can't believe it's only been four months since I was diagnosed. It feels like an eternity. I HATE not having hair and when I see pictures of my once long blond hair I cry. I know how you feel when you have to small talk with "normal" people...it drives me nuts. Especially when they complain about meaningless stuff. No one has a clue, other than other survivors. Thank god for support groups! I belong to one for women under 50 and I'm always leaning on them.
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Hi gang,
I can add to our group's misery. I started to experience massive menstrual bleeding and had to go to emergency where I got a transfusion of two units of blood and I stayed in hospital for twodays. My hemoglobin dropped from 145 (before chemo) to 72. It was a pretty scary experience. They gave me an injection of a drug called Lupron which will shut down my ovaries and put me into menopause to stop the bleeding. Cancer is a gift that just keeps on giving!
XXYZED: Yes, I am taking Perjeta. My insurance company approved it for adjuvant use! My doctor was shocked when he heard it was approved. AND, the insurer will pay 100% of the cost of the drug under the "catastrophic illness" clause, instead of the usual 80%. I am going to be taking 4 doses of Perjeta, and this means that I will have 4 taxotere chemo treatments instead of 3. Each will be 75% of the regular dose, which made my first taxotere more tolerable. I might ask my doctor to increase me to six doses of Perjeta, because that seems to be what the American patients get when it is used neoadjuvantly. So sorry to hear that you have had such terrible pain! I hope that they gave you good pain killers!
Boriuca63: I am so relieved that they caught your blood clot. One of my oldest friends suffered a massive stroke at the age of 40 and has not recovered the power of speech. Re: your low white blood cell count--are you on Neulasta or Neupogen? I get a shot of Neulasta after each chemo to keep my white blood cell count up.
CWhitney: Sorry to hear about your BRCA2 diagnosis! You mention that your mom was not tested, but it is possible to inherit the gene from your father. I have a distant male cousin who had the gene and had breast cancer. Your dad can get tested for it using www.23andme.ca. I think that the test costs about $150 USD. It is actually a really cool service. Having 23andme test your genome gives you medical information and genealogical information. I bought it for my dad for his birthday last year and we discovered that he has two second cousins that he didn't know about previously.
Scared67: I hear what you are saying about feeling uncomfortable in your own skin. After losing my hair, it took me a while to be able to look at myself in the mirror (and I haven't even had my mastectomy yet--that comes in December). I am bracing myself to cope with that big physical change.
For what it is worth, my friend's doctor told her that everyone seems to have at least one complication/set back during chemo. It sounds like our group had them all at the same time!
Let's keep in touch. Strength to all.
Stephanie
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stepincanada, I am so sorry that you ended up in the hospital. As you know, I had the same experience but it sounds like your doctor was more concerned. Thank god! I don't get any periods now. As for the brca2, I am down about it. But at least I know where this all comes from and I can do something preventative with my ovaries. My cousin and a few ladies in my support group all have it and have been supportive. I am still waiting back on my ovary scan and my nerves are a wreck. I guess this is my new reality of cancer scans. I feel like I am too young for all of this at 42. I went to a Look Good, Feel Better makeup session for cancer patients yesterday and it brought my mood up. They give you a bag of over $400 of makeup and you have a makeover with other ladies with cancer. It was uplifting. I recommend it to you all. You just have to sign up online through the American Cancer Society. Anyhow, I'm glad we are all blogging again even though we are in the throes of it.
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I went to look good feel better here in New Zealand and it was a lovely afternoon. The photo I use is the result - shame it's the best close up face I've had in years lol. The quality of the products was awesome. I will be practising the eyebrow technique at the weekend as looking in the mirror this morning have noticed my poor eyebrows have nearly gone.
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