Starting Chemo June 2019
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Hi all you brave, lovely ladies!
I go for my second FEC treatment tomorrow. The last three weeks have been such a rollercoaster mentally although physically I'm holding up remarkable well. No nausea, no bone pain, no bowel problems, no funny taste issues, no mouth sores and actually, very little fatigue. Of course, I've jinxed it now! Hair is starting to shed and I'm not entirely sure that the cold capping worked but I'll keep on going because you never know! I did pinch a nerve in my back last week because I sat curled up on the sofa for too long one day (I might have been on the PS4 - don't judge me!) and of course I instantly decided that there was something wrong with my liver. But instead of phoning the chemo nurses (again) and being sent down to A&E (again) I took some paracetamol and put hot and cold compresses on it and it sorted it out overnight! PICC line no longer hurts - I worked out that the 3 days of steroids post infusion probably masked the inflamation that was caused when it was put in. I have developed a stye from a dormant chalazion I've had for a year or so but the GP wasn't concerned as it wasn't a raging one and has just given me antibiotic drops. It's going down slowly...
I had a meeting with my oncologist today and realised that he's a pompous twonk. I mentioned that it was a shame I had to be sent to A&E for minor things when I'd much rather go to the Cancer Centre and be referred on if necessary (they're in the same building) and was abruptly told that on a publicly funded health system that's the best that can be offered. When I tried to explain how frightening A&E is for someone who a) suffers from anxiety and b) has never be unwell enough to go to hospital he interupted with 'people die on chemotherapy'. Nice. I lost my rag and said 'do you realise that's possible the worst thing you could say to someone like me?' To which he responded 'you need to understand the facts'. I was too angry to say anything else at this point.
He then asks me if I have felt any difference in the lump. I remind him that the lump isn't palpable. Did he even read my notes before coming in? He then wants to examine me. I say 'ok but I don't know what you're going to find' to which he answers 'it's to make sure it's not it's not getting any worse'. What? Worse? It can get worse? Honestly, he has no idea how to talk to patients. Exam didn't find anything. Obviously.
I decide to try and ask him some questions such as what does the PR receptor on the tumour do and is there any kind of treatment that can used in conjunction with the oestrogen blocker? I know there's been some research into using bioidentical progesterone because there's evidence it acts like a brake on the oestrogen. He just comes back with 'we don't know what it does. We just focus on the oestrogen.' Okaaaaaaaaaaaaaaaay............
Can I ask a question of you US ladies? Do you get given your Oncotype score as a matter of course or do you have to request it? In the UK, I don't think it's done on node positive tumours like mine. In fact I don't think they do it at all.
Do you all not take the WBC boosting stuff? Over here we're given 7 days worth of injections as a matter of course because, and I quote, 'because we can'. There are some good things about the NHS!
DogMomRunner - what was your WBC before you started treatment? 900 is ridiculous! You must have felt awful and how frightening for you. And for you too LoveMy4Kids. My WBC before I started treatment was 9,600 which is pretty good I think given that range for adults is between 5,000 and 10,000. But after taking the booster it went up to 23,000! I think we should all be taking it! It would have dropped back again after I stopped injecting but that's a hell of a way to fall!
Oh and another question.......do you all have ports or PICC lines? Or do they find a vein every time?
Sending you all big squishy hugs..............and a nice biscuit to go with that cup of tea!
xx
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summersday - first, I think "pompous twonk" is a most excellent phrase. I may have to start working it into conversations. 😃
I don't know what my WBC was when I first started but I do know that I run somewhat neutropenic normally. My MO apparently will use a WB booster if it falls below 1000. But he did not immediately put me on the booster when my WBC dropped to 900. He held the Taxol and hoped that it would come back up. When it didn't then I got the booster. He may be quicker to use it it happens again.
Getting an oncotype requires (per my BS) either my insurance paying for it (no) or me paying for it. However, I do not really have a history of BC in my family, just one aunt on my dad's side.
And I have a port. My BS had to almost put it in my armpit because I think I have a narrow chest. My old bras were 32 C.
Sorry about your Doc. Over here most of the think they are God so they definitely have enormous egos. I really hope you didn't jinx yourself with the SE. Being a bit superstitious, I would knock a couple of times on something wooden.
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DogMomRunner - thanks for your response. I was just curious to know the differences between the US and the UK. The chemo nurses today had ever heard of the Neulasta patch and thought it was quite amazing that patients didn't have to inject themselves. Everyoneon FEC-T is given filgrastim whether we actually need it or not. Thank goodness I say! I had my second treatment today and noticed that my WBC had come back up to 8.83 (was 9.06 before first treatment), my platelet count had doubled and my neutrophil count was higher than it was before! I told one of the nurses about my meeting with my oncologist and she knew exactly who I was talking about. She reassured me that sepsis is quite rare and will only really happens to patients who are on long term chemo regimes and who have other things wrong with them. I certainly won't get complacent with the temperature taking but knowing it's unlikely makes me feel much better.
The cold cap was really awful this time. She fitted it so tightly, trying to chew up my lunch was near impossible thatnks to the chinstrap digging into my jaw. And I am shedding a lot of hair now so I have my doubts as to whether it's going to work. I'll see what my head is like the week before the next cycle. It adds so much time to the treatment too. Arrived at 10am. Had to wait until 10.30am for my first sickness tablet which takes an hour to work so no chemo until 11.30am. At 11am the cap goes on. 11:30am treatment starts and is finished by 12:45pm. Then I have to sit and wait with the cap still on until 2:45pm. Sooooo boring. The lady next to me was going to be there all day. Her chemo bags lasted 3 hours each! I can't imagine that.
Well I fell pretty much the same as last time - tired with a mild headache. I'm on the strongest anti-sickness medication they're allowed to give anyone and it's fantastic. I ate a huge dinner followed by a few squares of dark chocolate and now I think I might have a little nap.
Hope you're all doing ok.....
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Summersday, I'm from Canada so we have a health care system similar to the NHS. I was told they would only send my tumour for Oncotype testing if I were node-negative.
I don't have a port or PICC line. My oncologist said they wouldn't bother for 8 rounds. Unfortunately I have very small veins so it's a bit of a production each time.
The saga of the hair continues. It's mostly gone now. But what's left is still coming out everywhere — little stubble bits. So I've taken to wearing a cap all the time, only to minimize the mess. Can't wait until it's all gone and I can walk around bald!
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Hi ladies, checking in briefly once again.
Round 3 has come and gone, one more to go. I think I was better prepared this time which allowed for less stress and more "hermit time" where I just curled up in bed and slept most of the week. So mentally, I did better. Physically was a bit different. This time I got the "flu-like" feeling of sore and achy muscles. Everything hurt, even my neck muscles from holding my head up. I'm still feeling sore and pretty easily fatigued. I've also started getting a little off and on numbness & tingling in my fingers, but I'm holding out hope it's from all the stiffness and whatnot of my neck and shoulder muscles.
Briefly skimming over a few other posts...
My oncologist orders Oncotype testing on all tumors that fit the criteria. I did not get an actual printout of the report, she just gave me the number score and her personal recommendations based on my case. I've thought about asking for the report, just to have it. I probably should... haha
My WBC is tested on the day of my treatments. It's been within whatever range it's supposed to be in order to proceed. I have no idea how low it gets or anything between rounds. They didn't put me on Neulasta or anything like that, I was told it wouldn't be necessary unless my numbers didn't recover between treatments.
I also do not have a port. Since I'm only having 4 rounds, they didn't feel it was necessary to go through the trouble of having one put in for such a short time. So I've been having an IV placed each time. Unfortunately I now have some lovely scarring from round 2, and currently have a rash from round 3 that I'm hoping won't also leave a scar but I won't know until the redness fades.
And lastly, hair. I still have lots of stubble. I've got patches of complete baldness and patches where hair is still actively growing. I actually had to re-buzz it last week just to even everything out. All the prickles are annoying for sure. I also have lots of bumps and itchy spots where I think the hair tries to grow back between rounds. I'll probably buzz it one more time in a couple weeks and hope that after my last round everything grows back evenly. Is anyone planning to use any special products to help with hair growth after treatment? I'm tempted to use Nioxin, but I've also had recommendations for a few other things to help too. Probably should try to remember to take biotin too... I think more than anything, I'm just hoping it comes back a little healthier than it was before I started chemo. Just give me a little thickness, that's all. lol
I hope you all continue to do well, stay strong, and take care of yourselves. Thinking of you all lots and lots. xoxo
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SIMSAgreen - I think that Claritin can help the flu like symptoms. I used it during my Neupogen shots and it helped for the most part. I think I would have gone port-less if I wasn't facing a full year of the Herceptin. Although the first 12 combo treatments might have collapsed my veins. I'm not sure what I'll do after the Taxol ends and I have a chance of the hair coming back. I'm so afraid that my hair is going to come back even curlier than before
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I hope the ladies of June are doing well.
I've got 5-6 more Taxol treatments to go. Feeling very tired.
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I'm very tired today too. Just had my third AC this morning. I'm keeping my fingers crossed that side effects will be manageable this time around.
I am also done with cleaning up hair. I still have weird patches hanging on. I would prefer it all gone so I can just walk around bald. Right now I have to wear a hat all the time because otherwise I shed everywhere!
Hope everyone else is having an okay week
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Hey Mumoftwo- I am still shedding just a bit mostly at night. Still wearing the night cap. I hope your SE are minimal this time. Being tired is well tiresome to say the least.
My WBC was back to 900. I have to get 5 neupogen shots starting tomorrow. I really bummed about this because the last (3rd) shit really caused severe bone pain. Blah. Why can't my body make white cells!!
And my MO won't commit one way or the other about the missed taxol. So I may be getting 5 more instead of the 4. yippee.
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DogMomRunner, have you tried Claritin? I’ve been taking the Neupogen shots and had crazy bone pain initially. The last two rounds I’ve been taking Claritin and have had no bone pain
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Mumoftwo- I did take Claritin the last time with neupogen and I was ok the first 2 shots. The 3rd shot was rough. I had severe bone pain all day and night, had to take ibuprofen. I figured the effects are cumulative and worried about having 5 shots this time. I did get some CBD oil so that may help.
Sorry you’re in the low WBC boat too.
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Hi everyone!
I'm now 10 days out from my second cycle and it's been the same in some ways and different in others. For a start I had the most awful heart palpatations on my first evening after that massive meal that I ate! My heart felt like it was going to beat out of my chest! No chest pains or shortage of breath but it took hours to calm down. They came and went (for much shorter durations) over the next couple of days so I phoned the chemo nurses (should have their number on speed dial) and explained everythinng to them. They reminded me that the FEC drugs can alter the way my heart works and asked if I had any chest pain etc. I said no but that my heart rate is definitely higher than I used to be..............I think. I have no idea what my resting heart rate was before! Well to my surprise, the nurses didn't send me to A&E for a ECG, they just said to go to my GP and get my heart checked out with her. As I was seeing to District Nurse to get my PICC line cleaned and flushed the next day, I asked if she could do it. They said she could.
So I ask the nurse to check my blood pressure the next day which turns out to be completely normal (110/68) and my heart rate which she says is a little fast but still within the normal range (83). I am reassured for a while and then start to worry that my oncologist might not be happy that I didn't get an ECG and that he might delay my treatment if he thinks that I need one - I see him 2 days before each cycle. I don't know about you ladies but it's near impossible to actually speak to your oncologist here in the UK. You either have to speak to the Chemo Nurses or what they call the Clinical Nurse Specialist Team so I decide to phone the latter thinking they might have direct contact with my oncologist. Again, they seem unconcerned. They tell me that if my heart has checked out normal, it's probably nothing to worry about and if the palpatations happen again I can just 'pop down' to A&E for an ECG.
Fingers crossed my heart can take more chemo! I'm only 41 with a perfectly healthy heart to start with so here's hoping..............................
And I have now joined the ranks of the bald and beautiful! The cold cap clearly didn't work as clumps of hair started coming out about a week ago. I hated not being able to wash it every day and having it fall out was so distressing. So I got my hairdresser to take it down as low as she could. Unfortunately, I had to go to the salon as she wasn't able to come to me but I went late when she was just finishing up with some training so there weren't many clients about. To my surprise, my children wanted to come with me. I have a daughter who is 8 and a son who is 11. They both said I was being brave for shaving my head so they wanted to be brave and support me. I was a bit unsure but I let them come. I kept a smile on my face as my hair fell all around me and when I looked over at my kids they were just standing there holding hands. Bless them, they didn't shed a tear. I got a lump in my throat thinking that this a moment that they will remember for the rest of their lives.
Annoyingly, there's still some subborn hair left. I'm hoping that the next cycle will finish it off completely as, for some strange reason, being completely bald seems more doable than have a patchy head. Now I wear these fabulous 1950's style turbans and pair them with big hooped earrings and large Audrey Hepburn style glasses when I leave the house - if I'm going to do it, I might as well do it with Hollywood glamour!
Oh and after I was so smug about not getting any bone pain, I have now sheepishly realised what the 'pinched' nerve in my back was last cycle because it happened again this cycle. How could I have hurt my back in the second week of the cycle again? That's such a coincidence.................oh wait. It's the bloody filgrastim, isn't it? It was such a specific pain that I had never experienced before, pulsating in my lower back so intense it almost made me feel sick. Within two days, it had gone. The first time around I just thought that my ice/heat packs had done the job and had congratulated myself on being such a good nurse. What a wally.
I have an ultrasound scan this Friday to see if the chemo is actually doing anything. My oncologist said that it's unlikely that we'll see any change but that it's good to check anyway. That's the problem with low grade tumours - chemo isn't always that effective.
I hope you ladies are doing ok. Sending positive vibes your way.......................
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Hi summersday! Good to hear from you. I've been worried about the June ladies and hoping that SE and other chemo effects weren't too bad. I'm glad that your heart checked out ok but wow that's scary. As if you don't have enough to worry about.
For me, I usually talk to the nurses first, then the nurse practitioner and then the oncologist. I see the oncologist about every 2-3 weeks. Since I am weekly treatment it's pretty much the MO or NP every other week.
I'm sorry that the cold cap didn't work. That's one reason I decided not to try it. It not working and spending all that money (here not many insurance companies cover it). But welcome to the bald and beautiful club! My hair is not really falling out but certainly not growing. It's about an inch long.
I also have the bone pain. My 5th neupogen shot will be this morning. I really hope the WBC comes up and stays up. Do you have the filgrastim every time
Good luck with the US on Friday. Again, good to see you here. I hope it goes a bit more smoothly.
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Hi DogMomRunner! I get given 7 pre-filled needles to inject myself with 3 days after each infusion. The pain seems to kick in after the 6th injection. It's managable with paracetamol so I'm not worried. At least I know what it is now!
It's the summer holidays at the moment and trying to keep my two kids entertained is proving to be pretty hard. I'm trying to arrange for them to visit friends at least a couple of times a week but loads of people are on holiday now. My mother in law is coming over from New Zealand stay with us for 3 months in August and I'm so excited to see her! Not only is she an 18 year BC survivor but she's such a positive and active person - I could really use that kind of energy around me at the moment! My father in law died from bowel cancer a couple of years ago (he was unfortunately diagnosed at stage IV from the beginning) so I'm hoping that all my treatments won't bring back too many bad memories.
I'll keep everything crossed for your WBC!
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Good morning everyone,
Just checking in while I have the chance. We've been busy here, trying to make the most of the better days, so I haven't had the chance to stop by and post in this thread. That and, quite honestly, I've just been finding it much harder to talk about things without becoming a blubbering mess. I want to be here and be supportive, just as much as I appreciate receiving support from everyone, but I have reached a mental breaking point where I just need to take a break from it all. I'm usually a strong person; I'm the one everyone turns to in times of crises to keep things steady and calm. However lately, I've turned more into a hermit - a bit of self preservation, I think. And with that comes a heaping of guilt at not being the person I usually am, the person I enjoyed being, the person I want to continue to be. The struggle is temporary I know, but it's still a struggle. And everything makes me cry now. It's like permanent PMS, and it sucks.
I do think about you all a lot, and I'm sorry I haven't been around here as much as I want to be. We're all in this together, and I do try not to take that for granted. I had a woman stop me in the grocery store a couple weeks ago, she was also wearing a head covering. We chatted about our diagnoses and treatments, hers sadly has not gone well for her and she faces a much longer journey than myself. But we hugged and cried and offered comfort in that brief moment. And I've thought about her every day since, just as I think about you all.
Thankfully, my final round of TC is this Friday. I'm not looking forward to the days following, but I am doing my best to remind myself that it's the last one and I'll (hopefully) never have to do this again. I'm still dealing with nonstop hot flashes, and still get a little tingly feeling off and on in my fingertips - though sometimes I wonder if it's just in my head since it's only barely noticeable. The patches of hair I still have left are growing just a teeny bit, enough to give me that annoying tingly feeling I had before it started falling out, so I'm likely going to buzz it one more time before Friday. Hopefully that will be the last time too. I haven't had to shave my armpits or legs since June, so that's been nice at least... LOL
From there it's on to Tamoxifen, with the looming option/decision of having my ovaries removed (though I think I'm leaning towards full hysterectomy if that's a viable option) and switching to an AI medication (Arimidex? Aromasin? Can't remember...). I've read about a lot of adverse side effects of Tamoxifen including joint pain, which worries me about getting back into running, and a risk of uterine cancer, which also worries me as I have strong family history of various reproductive system cancers (even though I tested neg for all genetic markers). I really hope that the chat with my Onco after my next treatment will help sort out the pros and cons of everything, so I can make a solid decision soon. Sometime after that, I'll also need to make plans to have my tissue expander swapped out for a permanent implant and have the other side lifted to even things out. And in between all that, I'll be working on losing the massive amount of weight I've gained through my comfort food couch potato hermit months and get back into my old routine of running and yoga. There's a 5k in November I've run for 2 years now, I'm hoping I can get back into good enough shape to go for #3 - worst case I can run-walk it, but the goal really is just to be there.
Dogmom - Good to see you here and posting lots, even with all you're going through. I've heard about the Claritin for bone pain from the Neulasta, but not for easing chemo side effects. I'm not on Neulasta, so I hadn't thought of taking it. I will look into it, maybe it will help for this next round. I hope the neupogen shots are working for you and helping keep your WBC high enough to finish your treatment schedule.
summersday - I get the feeling of heart palpitations after treatment too. For me, I think it's just a side effect of the chemo and steroids. I can be sitting on the couch doing nothing and my whole body can feel my pulse and it feels like my heart's gonna beat out of my chest. However I wear an activity tracker/watch that has a heart rate monitor, so when I get that feeling of palpitations I can check my heart rate and every time it's been completely normal. I think the steroids just heightens my senses of everything, even sounds and things touching my skin drive me crazy, and I'm guessing it includes my heart beat too. I wouldn't worry too terribly much about it, especially since you've had it checked out and everything seemed fine. I think as long as your medical team keeps an eye on it, you will be A-OK.
I'm sorry the cold caps didn't work for you, but glad to see you're making the most of it by dressing it up Hollywood style! Keeping you in my thoughts and hoping for positive US results!I think that's about it for now. I need to go wake my daughter up so we can get moving on our day. It's the last day this week that we have no appointments or other plans scheduled so I want to get out of the house and do something fun while we can.
You're all awesome and amazing and will get through this! xoxo
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SimsAgreen, sorry you’re having such a tough time. I think how you’re feeling is totally understandable. Try not to beat yourself up.
Summersday, I’m also struggling with keeping the kidlets occupied during the holidays. I feel so guilty that I can’t do more with them.
DogMomRunner, I’m sorry you also have to deal with the bone pain. Speaking of which, it’s time for my daily shot! I keep reminding myself that the Neupogen is keeping my treatments on track, but this last round has been awful.
These last few days I’ve been thinking that I just want to stop. I’ve been throwing up at least once a day and I’m down to eating almost nothing. I’m trying to focus on not getting dehydrated, but absolutely everything is gross
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hi all. Boy the bone pain really hit yesterday. Especially around the pelvic area. I swear I was walking around work like one of our residents (skilled nursing facility).
summersday - I wish I could give myself the shots. At least then I wouldn't have to drive to get the shots on the weekend. I'm sorry about your father in law but it's wonderful that you get to visit with your mother in law. I lost my MIL this summer to lung cancer.
SIMSAgreen -it's good to see you. Yay to the final TC round! I'm sorry that you have to make a decision about the surgery. And facing more surgery with the expander. Even though I am scared of still having breast tissue and recurrence, I am only going through the aftermath of a lumpectomy. I get what you mean about trying to get back in shape. My husband and I were talking about starting back running in about 4 weeks after I finish the Taxol. Maybe a turkey trot in November! Good luck to you and don't worry about being a bit blubbery, I think we're all in the boat.
Mumoftwo- I've had the nausea but no vomiting. I really hope that that calms down. When I first started, I had to switch to Gatorade to keep hydrated and not lose too many electrolytes. Can your MO prescribe anything to help? I'm sorry that I can't offer anything brilliant or helpful, but I hope that you feel better soon.
You ladies continue to inspire me.
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Hi ladies!
I just wanted to share my good news: I had my ultrasound today and it showed that not only had the chemo shrunk the tumour from 19mm to 14mm but that the 4 'suspicious nodes' they found on the original scan were now only 2. I am absolutely over the moon! My oncologist had told me to not expect much change after only 2 cycles because the tumour is only a grade 1 but this to me is a lot of change! It's knocked the tumour down by a quarter! The knowledge that this bloody awful systematic poisoning is working gives me the strength to carry on.
SIMSAgreen: I'm so sorry to hear that you're in such a difficult place right now. I'm sure that we all have our dark days, I know I do. Like you said, this is temporary. And although you don't feel it, you are the strongest you have ever been at this moment and the end is in sight. You are fighting with every cell in your body and you are winning. You are allowed take yourself away from people and reserve your mental strength. You are still you - you are just having to redirect the strength and energy you usually reserve for other people towards yourself. I understand why you would feel guilty about this but try not to be too hard on yourself. Right now, you are the most important and I'm sure that all your family and friends know this. Sending huge hugs your way.................
DogMomRunnner: what a pain to have to drive to get injected at the weekend! Do you have to drive far? We've got quite a warped sense of distance here in the UK. My parents live several counties away in Dorset and I think it's a long way to go a visit them. It's a 2 1/2 hour drive. I wonder why they don't allow you to do it yourself? It would make your life sooooooo much easier!
Mumoftwo: my two are practically climbing the walls! My husband took the day off yesterday and we went to play some mini golf. My daughter then moaned that she wanted pizza for lunch so we found a fantastic little pizza place nearby (where apparently all the celebs hang out!) and I braved a meal out. The owner was so lovely and once I'd told her that I was on chemo, she made sure all the glasses and cutlery were steamed clean for me! I had a lovely time - it almost felt normal. I'm so sorry to hear that the nausea has hit you so hard. Have you heard of Emend? It's the drug I'm given at the start of my cycle and it's amazing. I'm high risk for sickness so I get given three types of anti-emetic: Emend, Ondansetron and other one that I don't actually need to take! I have not been nauseated once. Perhaps your MO can get it for you?
I hope you all are doing ok and that your SEs are bareable........
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Yay summersday! That's great news about the nodes and the tumor shrinking. Woo hoo!
My drive to get the neupogen shots over the weekend is only 30 minutes but the traffic can be a bit unpredictable. I wish I could do it myself but I guess the US medical system is a bit (a lot) different
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So I just spent four days in the hospital. I got a fever, went to emergency, I was dangerously neutropenic. Just got out yesterday.
I was scheduled for my fourth AC round tomorrow, but I cancelled. I just can’t face it.
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Oh my goodness Mumoftwo, how did that happen? I thought the filgrasim is supposed to keep us safe! That must have been such a shock for you. I'm so sorry that you had to postpone your next round but you definitely made the right call. Give yourself some time to recover some more and come back fighting! Have you ever tried making bone broth? It's supposed to have great immune boosting properties and is nice to drink when you're feeling a bit bleh. I like to make chicken bone broth from left over roast chicken carcuses or sometimes I buy cheap chicken wings (sometimes with some feet!) and roast those up before taking off all the meat and slinging them into a pot.
Of course you could be vegetarian or vegan in which case I may have just offended you.......................apologies if I have!
I truly hope you feel better soon - sending healing hugs...........................
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Wow Mumoftwo! Mine has been low but not that low. Your MO should canceled for you at that point. I hope you feel better soon. Unfortunately not much besides the filgrastim/neupogen injections that can pop it back up.
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summersday, that’s what I thought about the injections, but I will be taking more precautions from now on! I am actually vegetarian, but I am completely not offended. I do sometimes eat meat while travelling and I ate meat during my two pregnancies! A friend of mine actually offered me some homemade chicken broth. Maybe I’ll take her up on it. Whatever it takes to get through this.
Thanks DogMomRunner. I really hope taking this week off of chemo helps me feel human.
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Hi lovely ladies!
Well what a difference a day makes. Just had my 3rd cycle of FEC and I feel AWFUL. I feel like I've been run over by something very heavy. Soooooo tired. I cried when the chemo nurse handed me back my book with my blood work numbers in it. Before, my numbers jumped back up to nearly where they were before but this time, they were so low. The chemo nurse said she wasn't at all bothered and they were well above where they needed to be to let me continue with the chemo but I am so scared. If I can fall from a neutrophil count of 6000 to 2000 where is there left to go? Why didn't my counts bounce up again? The nurse said they would continue with the chemo even if they were lower because they know what they're doing! And if they were concerned they'd give me an extra week to let them recover more.
I really wasn't concerned about infections last cycle but at some point I must have been neutropenic and not known! Probably at the same time I had my pizza meal out! I am really frightened now. Let's hope the filgrastim does a better job this time.......
Mumoftwo I'm so pleased you weren't offended. I'm going to try the chicken broth this time round. I didn't bother with the second cycle because I felt ok. And I'm going to have more juices. My husband makes me one with celery, carrot, apple and ginger which is lovely. I feel I need to do everything I can do for my immune system. Even though I can't technically 'boost' it with food, I can support it with vitamins, minerals and protein. RBC was actually in the anemic range (aaaaaargh!) but chemo nurse shrugged if off and said that as I wasn't symptomatic it was ok. My last two periods have appeared like clockwork and have been as heavy as ever. Sigh. That would account for the drop in RBC then. Platelet count was good. Useful if I cut myself, I guess. Nurse said that the blood cancer department next door would laugh at my concern at my platelet count. It was 303, still higher than when I started. The blood cancer department are dealing with platelet counts of 5. Hmmmm. Kinda puts things into perspective.
DogMomRunner - what is a turkey trot? I'm guessing it has something to do with Thanksgiving?
SIMSAgreen - if you're looking at my post, I want to tell you that I'm feeling the same way you described earlier. I cried so much today, my eyes were so puffy I couldn't barely see out of them. I hate that I seem to be some kind of mood thermostat in the house so that when I'm miserable, tired or irritable, my children act in the same way. Tonight my son has been acting up big time. My sister took them to the movies today and then made them some lunch. He hasn't stopped complaining about how boring it was. Him and my husband got into a shouting match which ended up with name calling and door slamming. I know he's worried about me and I think sometimes it comes out as anger. I wish I could be stronger for him.....
I hope you're all ok - I think I'm probably feeling like most of you now and I wish I could hug you all. I've never met anyone with breast cancer believe it or not. Everyone I know seems to know someone though. It's a strange type of sisterhood that no-one wants to join. But knowing that I'm part of it makes me feel less alone and less fearful. I am so thankful for being able to to share my experiences with you wonderful ladies - you give me such strength.
xx
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Good afternoon, friends. It seems like a number of us are trudging at this point. It’s hard to stay strong.
Summersday-it seems like the chemo effects are just going to go on and on but people tell me things do get better. I also worry about my blood work but they keep giving me the chemo.
Mumoftwo-people seem put a lot of stock (no pun intended) in these broths soup has been helpful to me. If you can stomach it. How do you keep your protein up?
Dogmomrunner - sorry you have to make that drive. I hope it will be worth it.
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hi all you BC warriors!
I hope Mumoftwo that you are feeling better!
Summersday - a turkey trot is usually a 5k run early on Thanksgiving Day so you can then eat whatever you want. I hope you are also feeling better today. I think a WBC can drop to 1500 and you can still be considered safe for chemotherapy. Mine has dropped to 900 and I have still gotten that day's treatment but then had to go for the neupogen shots.
And I feel the same way about this sisterhood of ours. I'm sorry that you have to be here but so thankful you are.
Yes! AlexandraS. Trudging along,
I also wanted to say that I have been getting some good results with a combination of CBD oil and melatonin to combat the steroids at night. The past two Thursdays (treatment day) I have used the oil and melatonin and it really helps me sleep a bit better.
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Hi ladies of June! I hope that you are all doh g well.
I posted an update on the weekly Taxol thread but wanted to post here also.
I got my last (11th) Taxol! My NP said that the Herceptin will start next week and then every 3 weeks. I will be scheduling a consult with the radiation oncologist in the next 2 weeks to figure out my rad schedule.
And I rang the bell. I didn't necessarily want to do it, thinking I might jinx myself and thinking of all of those who have higher stages and may never get to ring it. But my husband told me something last week that I didn't know about. My mother in law who was diagnosed with advanced lung cancer late in 2018 went through dose dense chemo. Her tumor was inoperable both due to size and location. She completed her 1st of chemo and then went onto radiation treatment. The tumor never shrunk that much and it was expected that she would go through another set of of chemo. During the rad treatments they found that she had mets to her brain and she went on hospice. My husband and his family said that she really wanted to ring after what she went through. She passed away in May.
So today, I rang it for her. My husband didn't know I was going to do it. We both cried. But for once my cancer did something good.
I hope all of you continuing on with chemo have minimal SE and that the light at the end of the tunnel is growing brighter. Love to all of you
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That is beautiful DogMomRunner. Thank you for posting. So happy that you are done your Taxol.
I just had my last AC this past Tuesday, after a two week delay due to very low neutrophil counts. I feel awful, but at the same time I’m relieved that I’m done with AC. I start on dose dense Taxol in just under two weeks. I’m not doing it weekly. Not sure why. In any case, I’m hoping Taxol will be a bit more tolerable.
Hope everyone else is feeling better than I am
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What a lovely tribute DogMomRunner. And yes, I agree that some good things can come out of this horrible diagnosis......
Congratulations on completing your Taxol course! I have 3 more treatments and I move on to Docetaxel next Friday which is part of the taxane family I believe. I'm 2 weeks out of my third treatment and feeling really good. I'm not sure why. The first week out was quite challenging as my head felt kind of fuzzy and thick for a whole 7 days. It didn't hurt enough to take pain killers it just made me miserable. The following week was completely different! Aside from the throbbing lower back pain from the filgrastim for a couple of days I've felt pretty close to normal. I savour each of these days because I know that things could change very quickly. I've upped my protein intake susbstantially and I wonder if this is making a difference. Who knows?
Mumoftwo, I'm sorry to hear that the AC hit you so hard but really pleased for you that it's over. From what I understand people tend to tolerate one better than the other so it might be that you sail through the Taxol! I'll keep everything crossed for you.....
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Mumoftwo- congratulations on finishing the AC! I echo what summersday said about Taxol being a bit less horrible than some of the others especially AC. I'm on the weekly Taxol thread and you are welcome to come over there (if you haven't already) whether you are weekly or not. A lot of the ladies there have been through more extension treatments and may have some good tips for you. I hope you are feeling betterment soon.
Summersday - yay on only 3 more to go with this part of your treatments! Docetaxol is taxotere here in the US. And it is a bit stronger (from what I've read) than the Taxol. If my tumor had been a bit bigger I would have had to go on it. I'm not sure if they have a specific taxotere forum here but I know that a lot of the HER-2 positive folks have been on it. I'm glad you are feeling good though no matter how long it lasts. Wednesday night I had a sore throats and thought for certain I had something (cold, upper respiratory something) and we had a pho dish that night for dinner. My sore throat went away and my WBC was good on Thursday which was a surprise. I think sometimes we don't give food enough credit for helping our bodies heal.
But good luck ladies with what comes next. I will be checking in on this thread to see how everyone is doing.
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