Starting chemo February 2018
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jo - How is your CBC? Mine has been stupidly low for months now & I've had several smears done in between normal CBCs
I believe it's to check how your bone marrow is doing/recovering. The blood smear means that a pathologist looks at the actual cells under a microscope and examines them carefully for signs of pathology.
You know that teeny tiny risk of leukemia or lymphoma from some of our cancer treatments?Some of the signs of that & other diseases can be seen on a smear. The count is just one aspect, but if they examine what the cells actually look like, it tells them more info. Here's a nice article (with pictures of what they see on the slide!) https://www.nejm.org/doi/full/10.1056/NEJMra043442
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Moth-Thanks. WBC and RBC remain low but has gradually improved. WBC has always been between 3 abd 4, except for the one time it went to 1.3 When that happened I had to take antibiotics for 10 days. RBC has stayed between 9.3 to 9.8. I will ask my oncologist on Friday for breakdown of the blood smear test. Radiation is going well. The radiation team is fantastic.. My thoughts are with you today. Hoping you get very good results today when you speak to your doctor. It's almost time for radiation treatment 3. There's always the same group of six waiting for a radiation treatments. I enjoy conversing with them. We are all so different yet we all share the same damn disease. It is a very positive group.
I'm 5 weeks post chemo. My energy level has almost doubled . Even with chemo I was able to work and exercise but there were days I I really had to push myself to get moving. I'm starting to feel the way I did prior to my cancer diagnosis . Food is slowly starting to taste good again . My close vision has minimally improved. My side effects didn't occur overnight and it'll take some time for them to leave my body.
Ruth continue to have fun working on your house. Be careful on the ladder.
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I just got really bad news, there was still cancer in my lymph nodes and my breast tissue so the Chemo didn't work, I am devistated
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big hugs, Deb. It's can still be ok. Are they scheduling you for surgery now?
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My scan on my right (supposed to be healthy) breast today still led to a lot of "Hmmmmm, I don't know" from the radiologist. There's a region of calcification & they want to rule out DCIS so they booked me for a mammogram guided biopsy. Because I've been so neutropenic & still have 2 weeks of chemo left, we scheduled it a week pfc. I don't want to get an infection on top of everything else.
Scan stress is real, I've discovered. I came home with a headache & a stomach ache & just an all over ache & even shed a few tears in the car parking lot. I'm SO tired of all this. Suddenly a bilat mx is sounding really good if I can avoid all this - esp if it repeats over & over again.0 -
Deb,
Hugs, hugs, hugs. Don't lose hope. Surgery and radiation is there to get the cancer out of your breast and lymph nodes. I'm not sure that chemo alone always kills all of the cancer cells. What test did they use to determine that the cancer remained? Did they feel that the chemo was totally ineffective or just didn't get all of it? It's a combo of chemo, surgery , radiation and targeted treatment for your cure. You've already done the hardest part. Hopefully you have your surgery scheduled. I know it's been a rough ride for you so far. Hang in there and keep going. Sending warm thoughts from Michigan
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Moth,
Yuck! It seems just cruel to have to worry about your healthy breast status while dealing with chemo for you other one. How much do we have to endure with this! I hope you get that biopsy soon, it's benign and you can get a much deserved break! I also had a lumpectomy and and are thinking that repeated scans and mammograms and going to be extremely stressful times. I’m a worrier by nature and tend to second guess things. I liked the quick recovery from the lumpectomy and that I still have my breasts but they will probably always make me nervous
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debs,
Dont lose hope dear ..hopefully they will schedule your surgery and come up with a better plan . Hugs
Moth,
Fingerscrossed ..I hope the biopsy states its just a benign..
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deb-WOW! You went through so much with chemo? Did the chemo shrink the tumor at all? How did the doctor determine the cancer was still present in the breast tissue and lymph node? Hugs to you. Now it will be surgery and radiation? You've already gone through he toughest part.
Moth- it must be very frustrating for you not to have a definitive answer regarding your Healthy breast. Hopefully it will be benign.
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Debs, please don't be discouraged too much by the results of the chemo. It seems it has worked partially. Remember that most people get first surgery and chemo treats only rebellious cell in all the body. I send you a warm virtual hug.
Moth, what a bummer! Like Debs, difficulties and set backs seem to pile up for you! Hope the biopsy will be nothing.
Laurie i read about your loss of memory! It must have been scary! I am wondering if we will always think cancer when our body behaves out of normalcy.
Good luck to everyone with the next step in the treatment.
Today is the soccer game France vs Belgium. I am not a big fan of soccer but Belgium is in semi final and I feel i ought to watch the game. Maybe we will be in the world cup final...
Cheers!
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Hi Deb,
I know how disappointed you must be. I had a partial response to chemo. Although the doctor never expected the chemo to give me a complete response, I secretly hoped I would be one of the few to see their tumor shrink to nothing. However my doctor explained that the chemo still did its job.
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How are all my February chemo girls I'm hoping and suspecting were all done with chemo by now let's hope so so my current status is had my double mastectomy had tissue expanders placed and they are killing me I'm about ready to beg the doctor to take them out they just don't seem placed right and now that I have to have radiation who even knows if they'll be able to do the implant exchange after radiation started an AI today and am having bone scan and abdominal scans the 25th to see if there's any tumors anywhere else in my body if not we have plan B laid out which is continue with herceptin try projeta again and take the AI and possibly go in and take out more lymph nodes if the cancer has spread and I have tumors elsewhere we have to regroup and think it over again
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Hi Deb,
Yuck! The fun never stops! I'm glad you got your surgery. Hopefully the expanders will become less uncomfortable soon. Did you get any body scans prior to or during chemo or are these your first ones? Hopefully they will be fine and give you some peace of mind. Why do they want to remove more lymph nodes? I thought radiation does the job unless there are many nodes involved. I know that you stopped Perjeta due to the big D. I actually started Perjeta on my 4th cycle of chemo and had some diarrhea although not what you experienced. Now that I'm done with chemo and just on HP, NO diarrhea. I saw on the Perjeta website, that the incidence and severity of diarrhea goes way down when used without chemo. It might b worth trying again.
Hope things look up for u soon. Hugs
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Deb- hopefully your scans will come out okay. Sorry you're having a tough time with your reconstruction. Habg in there. You have been through so much. Things have to start getting better for you soon
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Hello All,
Deb- I am in a similar boat to you but am ER/PR +/her2 -
I had a bilateral mastectomy with direct to implant with SNB on 6/21 after neoadjuvent chemo. I had a complete pathological response at the primary tumor site in the left breast but the SNB showed 2/3 nodes still had evidence of cancer with extranodal extension (had prior to tx). US prior to surgery showed no imflammed nodes so they felt SNB was what I needed
Trying to figure out the next step. They presented my case to the tumor board to see what everyone recommended. Looks like it will be either 1) axillary dissection and radiation just radiation. The general consensus was that I see the RO but didn't think ALND was necessary and increased my risk of LE.
I saw my RO Friday and still do not know what to do. Standard of care in ALND + rads but there is a trial that I can be a part of which puts me into either ALND/rads or just rad. If I do ALND, then the axilla nodes do not get radiated.
I am only 37 so I want to be as aggressive as I can to beat this. My MO also is extremely positive and said that radiation and my hormone therapy is what will ultimately take care of my cancer (started AI saturday) but I am just concerned about leaving nodes and area with extranodal extension in that could still have cancer. Not really sure the benefit of surgery other than removing everything that could be cancerous and I really do not want to go in for another surgery. I am so torn.
Anyone with similar issue?
What did your Dr's MO, SO, RO recommend?
What did you decide?
How are you doing now?
Thanks,
Laura
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Laura- I had a similar dilemma about whether or not to do an ALND. I had surgery and SNB before chemo. I had 2/3 nodes positive with one extranodal extension. My surgeon said the standard of care was to do a ALND but new studies showed that radiation alone could be fine in my case. She recommended that I spoke to the RO and MO to help decide. RO recommended surgery because I'm young, MO recommended against surgery because I am young. Go figure. Lymphedema risk definitely goes way up with surgery. I am 52 ( not nearly as young as you), and that could be a lot of years dealing with Lymphedema.I eventually got a second opinion from another MO who said just radiation, no surgery. Neither MO felt that the extranodal extension was a factor and the nodes would be sufficiently treated with radiation.
I am currently halfway through my radiation. Because of my decision to keep my nodes I guess I will never truly know if I am stage 2 or stage 3. That said, the treatments I am doing ( surgery, chemo, radiation targeted and AI) would be the same regardless.
Good luck with your decision. Be confident that whatever you decide will be a great tool in ridding yourself of this nasty disease. Hugs
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Hi all,
I’m thinking of those of you who are having challenges especially Deb, Moth, Laurie, and Laura, and hope that this new week brings about positive answers and healing as we all work towards our cure.
I’m similar to Deb and a few of our other Feb ladies, in that I did not receive a complete response to chemo/immunotherapy (TCHP) in either the tumor or in the one cancerous lymph node. I was VERY disappointed hearing this news, and more than a little scared for my future. But I have faith that, as Rockcity said, it’s a combination of all the treatments that will beat this cancer back.
I only had a partial response probably due to the fact that my tumor was made up of DCIS and IDC (my onc confirmed that DCIS does not respond very well to chemo), and the HER2 positive is heterogenous according to the original biopsy: only 30% of the tumor was HER2 positive, the rest was er+, pr-, and HER2 negative. We are thinking that the immunotherapy and chemo attacked the smaller HER2+ portion of the tumor, but probably didn’t do much for the HER2- portion. I had a lumpectomy and axillary dissection last Wednesday and they are sending the tumor to be retested for HER2+ status to make sure it was obliterated by the therapies. This made me feel better, but also complicates things so I can barely wrap my head around it.
Laura you are facing having a choice about going in for more surgery, and I think you should go with what you feel in your gut is the right treatment plan and then don’t second guess yourself. It seems like with so much of this there is no right answer, and we can research on our own until we drive ourselves crazy with the what-ifs. I just had a lumpectomy last Wednesday, and all the scans I’ve had (Mammo, ultrasound, MRI x 2, PET, and CT) have only shown one node consistently looked suspicious. The placement of my tumor was high in the axilla, with the affected node deeper in, so surgeon had to clear the whole area to get to it. 10 nodes were removed, with only one cancerous. I am on the opposite side of you- with no choice in what the surgeon had to do, and it turns out that it was overkill. I have conflicted feelings about this as I don’t want problems with lymphedema, but honestly it’s a relief to have this proof that nothing else was going on in that whole area. The affected node showed a small focus with no extracapsular extension, and the surgeon felt that the cancer was contained. But 9 unaffected nodes are now gone. Damn.
How are the ladies on rads doing? Jo, I know you said you were tolerating it pretty well, and I’m glad for you! I’m still less than a week out from lumpectomy, but healing well- physically at least, but I’m HATING the drain and that is making recovery hard!!! Meanwhile I’m getting myself mentally ready for the next step- rads sometime in August.
Have a great week, lovely ladies. Hugs to all.
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Hi Ladies,
It doesn’t look like I had a complete response either. My tumor was initially measured at 1.4cm and the MRI right before surgery showed it to be 1.1cm. Very disappointed it didn’t get any smaller. However I did have a small “satellite nodule” coming off the tumor that was almost a cm and it looks to have completely resolved.
I have an appointment Thursday with the surgeon and we’ll go over the pathology report. I’m sooo nervous. It showed in my lymph nodes and she took them all...I had a biopsy of only one and I’m praying praying that it’s the only one involved. My pre-surgery MRI report said nothing about my nodes either way which I thought was weird.
Anyone else having emotional issues? I’ve heard we can get PTSD dealing with all this and it surely doesn’t surprise me. Today I’ve just convinced myself that it’s going to be bad news and I’m never going to win this fight. I know it’s stupid but I get it in my head and nothing seems to work to get it out. I’ll fixate on little bits of googled info and drive myself nuts. Today I literally could not get out of bed until 4pm. Thankfully my kids are old enough to survive but I felt sooo guilty I just couldn’t make myself get up and do anything for them. Then I get so sad thinking I may not be here to watch them finish growing up.
Thinking of all you ladies as you deal with this hateful awful thing as well.
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22fightor- I've had no issues with radiation. My biggest issue with radiation is having to wake up at 6 a.m. every morning. Friday I have my second infusion of herceptin and perjeta. without chemo. I haven't had any issues with h&p so far. I never realized how tired I was from chemo until I stop receiving chemo. Each day I feel stronger. I walked 2 miles yesterday evening with my two broken toes. It was painful the last half mile. Obviously I overdid it but I desperately wanted some exercise outside the house.
All of you having to make such tough decisions regarding your treatment are in my thoughts. The most difficult part must be when you have different opinions amongst your Physicians. I agree with the above post in situations such as this you need to do your research and trust your gut. Be careful and try not to over research. That's one of my weaknesses so I try to stay away from Doctor Google. Best of luck.
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Hi ladies. It's been a while since I've been in here. I'm so sorry that some of you didn't have complete response to chemo. Surgery and rads will get what remains. For all of us.
I was supposed to get my port out yesterday but due to a scheduling FUBAR at the surgeon's office I still have the little sucker. They couldn't find any record of me even having an appointment at all and then they told me since they just moved offices that they won't have facilities to even do that until October! I've been having some really bad luck with scheduling across the board this whole time. Yesterday was the last straw and I wound up yelling at them and crying in the waiting room full of people. No shame because my spirit was completely broke at that point. I felt like I was crazy. So much so that I decided to search through my phone records to see if I could find where they called me. And I did, because there were two calls I had to make to other doctors to get it approved and it's all there on my phone bill. I'm waiting for that phone call today to refer me elsewhere. I find it very hard to deal with this kind of thing because I don't want to unleash my wrath on the wrong person but I feel like I do want someone's head on a stick. I just want them to admit I'm not crazy and that they made a mistake.
For those that have completed taxol, are you having bone and muscle pain in your arms/legs? I never did during treatment but now I do and it's not fun. I got some CBD oil but it doesn't seem to be helping any yet.
I'll start rads in a week or so. I've done the setup, just waiting for them to develop their plan.
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LHebs - If you're 37 aren't you pre-menopausal? I thought Arimidex was for post menopausal? I'm concerned about tamoxifen so my doc gave the option of removing ovaries and doing an AI but I haven't decided yet.
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Laura - tough decisions. It's hard when even the experts say there's just not enough evidence to make a recommendation one way or the other.
22 fightfor - glad you're recovering physically from your lumpectomy. That's unusual to have a drain post lumpectomy, isn't it? But it's a good idea if it keeps a seroma from forming.
Colleen - sorry you're having a hard time emotionally. I am too but I'm in the super raging phase. Everything and everyone is pissing me off. I have an open tab for a counsellor in my browser right now. I guess I should call and make an appointment. I've been to counselling before & I know how much it can help but it's the actual deciding to go that's hard sometimes. Can you find a counsellor to speak with? This stuff is mentally exhausting and those of us with close family & children are, I suspect, spending a lot of time with our 'game face' on and that sucks even more energy out of us. I hope you're having a better day today. Waiting for Thurs is hard though...we're all here with you, waiting to hear your results. Fingers crossed.jo - so glad to hear you're finding radiation so tolerable & you're regaining your energy! That is encouraging.
I have taxol 12 this Thursday & my biopsy the following Thurs (26th). Today I have a 6 month follow up with my BS. I think it's a waste of time honestly - he'll just look at my lumpectomy & slnb scars and say lovely, that's healing nicely and I'll have driven 30 min one way to see him for 3 but it is what it is. I feel like I can't even celebrate or be happy about the end of chemo being in sight because the stupid biopsy is still hanging over my head. Also, I'm so tired that I've needed a nap every day so far since the last chemo - and not even a short nap; I just sleep until I wake up naturally and it ends up being between 1.5 and 2.5 hours every day. I'm getting nothing done when I'm awake either because I'm just so tired and limp.
I finally dug out the Wunderbrow and have been trying to draw on brows. OMG, total disaster so far. I look like I took a brown sharpie and drew lines on my forehead. I keep watching youtube tutorials (there are a couple specifically for chemo or alopecia people because it's different when you have no brows at all versus having some hair there for the product to stick to) but I'm not sure I'm getting any better at it. I'm considering going to a salon or brow bar and having a pro draw them on and then maybe I could just maintain it. The ones I did yesterday lasted through a nap, my evening washing up and they're still here this morning; they still look ridiculous....0 -
moth-thanks so much. I do think I’ll inquire about a counselor at my next apt. It’s just getting too hard to handle and you’re right, having to pretend I’m fine all the time in front of my kids makes it much harder! I’m having a disaster of a time with brows as well...try to draw them on and they look ridiculous.
Cbok-so sorry you’ve had a hard time with appointments. I’ve dealt with that as well. Had an appointment canceled bc my MO was out of town and just looked back and realized I’m not supposed to see her at this week’s HP infusion either. That makes 8 weeks! I told scheduling and they set me up with the NP and said they were sorry it had been so long since I’d seen someone. Why am I the one having to stay on top of this, isn’t cancer enough to deal with? Can’t people just do their jobs?? Argh
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Cbok- you handled the port removal screwup well. I would have been arrested for assault! Hopefully they will make it right for you. I too have joint/ muscle and bone pain. It started about 10 days ago. No problem with it during chemo but here it suddenly is. It hurts enough to mess with my day. I'm 3 weeks into radiation and spoke to the RO about it. All he said was it's not the radiation, use ibuprofen and maybe we should get a bone scan. WHAT! I flipped out at the insinuation, told him I had a scan in Feb. and he backed off the idea. It's not just one area that hurts. It's my whole body. After doing some digging, it seems like delayed body pain after chemo is not uncommon. My MO never mentioned that and I don't see her again until late August. So the question is how long does this chemo SE stick around ( if that is what it actually is) and what to do about it to keep on functioning. It sucks. A few weeks after chemo finished, I got my energy back, felt really good and was getting more positive about this whole year. If you get a more definitive diagnosis, please let me know.
Reading these recent posts, it sounds like our group definitely has some emotional healing to do as well as physical. We will get through this. Get the support you need and know our awesome February group can relate and is here ready to listen. We’ve got each other’s back!
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CBOK--I was on zoladex for ovarian supression and fertility preservation while on chemo and now on lupron. I have been considered menopausal since my last period was in Jan and the meds I am on. That is what I was told.
Thanks for all the support. I am going to go ahead with the ALND and hope for no LE. No one could give me a great answer but my amazing nurse navigator explained that radiation is not best for gross disease and since I had 2/3 positive nodes along with extranodal extension, that is more than just trace disease. That was enough to help me make my decision so I go back in for surgery 7/23, unless anyone can give me good evidence that I don't need it.
Good luck to everyone and stay strong!!
Laura
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Moth, rockcity, deb, cbok, laura, 22fightor, lhebs and colleen- I can appreciate your raging mood and meltdowns. Prior to my being diagnosed with cancer my medical facility lost all of my records for almost 6 weeks. I kept hand-delivering them and they continued to misplace them . I wasn't overly concerned because all tests and scans indicated I didn't have cancer. I persisted anyway just in case. The only time it was straighten out is when I went completely ballistic.. After I went ballistic it took them approximately two hours to find all my misplaced records. Then I was scheduled for a biopsy ASAP. Lo and behold I was diagnosed with cancer OMG. If I hadn't persisted, 8 months later I probably still would have been undiagnosed. There were numerous times I was going to drop the whole issue and wait for my next mammogram / ultrasound due in July of 2019. Persistence does pay off. For all of us, it is very frustrating to deal with lost records, miscommunications,waiting for results and waiting to schedule scans and biopsies, insurance, appointments that get lost unexpectedly, and all kinds of other crap. We have to deal with surgeries, radiations and chemos and then decide the best course of treatment. And for some of us it isn't a clear-cut decision. So many things to deal with yet we're supposed to be strong, patient and just figure it out. Sometimes it just flat out sucks. There isn't anything wrong with counseling . It's good to have an objective ear and not having to worry about putting on a face for the family, friends and co-workers. I also know each and every day we have to be advocates for ourselves and each other. When I read the posts tonight I felt your frustrations, anger, anxieties and fears. Been there and we'll probably go back there. It is easy to understand meltdowns in doctors offices. Soon all this craziness will pass and things will straighten out. Once you decide on a course of action, things do become less stressful. I'm going to my floor now and do some meditation. Sending virtual hugs and best wishes to all of you. PS- sorry for the ranting but when I hear these stories my heart feels for you. We are all human and it's okay to feel anger and frustration. I need my meditation time
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hi I’m thinking of you all trying to make tough decisions about treatment. I’ve been faced with two “choices” at every step of the treatment. it seems because of my age (44) I’m usually in a grey area between an aggressive treatment option, and a less aggressive option which would be standard of care for someone over 50. Now I have another tough choice between tamoxifen, and ovarian suppression with AI. MyMO feels AI is slightly better although not always as easily tolerated. Any other premenopausal ladies here given this choice?
I haven’t had any blood test since my last chemo, but noticed many of you have. I thought it was just the Canadian system, but I see some other Canadians are doing more blood tests beyond chemo. What am I missing? Which doctor is following up with these tests? MO? RO? GP?
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Walden,
I haven’t met with my MO since finishing chemo but I’m wondering what type of drug I’ll be offered as well, being as I’m only 38. I haven’t had any blood tests since finishing chemo either, but I do go for an infusion tomorrow (Herceptin/Perjeta) so I’m wondering if they’ll take some then.
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colleen- I receive herceptin and perjeta every 3 weeks. My MO old me the standard is labs prior to herceptin & perjeta and then if everything is fine he orders the infusions. This could be the protocol at this particular Cancer Center. I had labs done for my first infusion and have labs ordered for Friday morning prior to the second infusion.
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Allegedly I'm scheduled to have the port out on Aug 8 now. When I called the surgeon's office back I told reception, "Hi, I'm Crystal. I'm the one that had a fit in the lobby yesterday. Can I please talk to Stacy?" I didn't have to wait long this time. I'm sure I'm flagged as combative in their files now. lol Squeaky wheel and whatnot.
Walden- I have read that ovary suppression/removal plus an AI has a slightly better overall survival than just tamoxifen. They both have similarly crappy side effects. Originally my MO told me that I wouldn't want to have them removed because it would affect my sex life. I told her so would being dead! And I brought up that tamoxifen can cause bone loss. She said no it won't, but after looking into it farther I learned yes it does in pre-menopausal women. It's actually used to help with bone loss in post-menopausal. I plan on bringing that to her attention next visit. But suppression/AI does it too so I don't see an advantage with either on that point. As for hot flashes - I'm in chemopause still so I'm already having that anyway.
Do those of you with ER+ and HER2+ take perjeta/herceptin and tamoxifen/AI? I'm HER2 neg so I'm just curious.
My MO has me doing blood tests before each visit even though I'm done with chemo. In my case I think it's just routine and they're just making sure I'm healing. Not really sure though. Could just be a cash grab. I've already paid in my out of pocket $12,000 for the year so they can charge insurance for whatever they want until Dec 31 as far as I'm concerned. ha ha
I've been considering seeking out a therapist. Everyone around me is tired of hearing me complain. They don't really get it anyway.
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