Starting Chemo in November 2017
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Nonahope - Thanks for the concern, but I had asked my OM a question with that very concern (could this be bone cancer), in regards to my back pain after my first treatment. She said that bone cancer travels through the lymph nodes, not bloodstream. Since I had no lymph node invasion, she ruled that out. The weird thing with this back pain is that it goes away, but returns 5-6 days after chemo. I know it's the chemo drugs causing it. By next week, I should be ok again, but this isn't the reason I'm considering skipping my last treatment. Although it's been hard to find topics on what happens if you short the total treatments, I did find I'm not alone. Many have done this with doctors permission. Mostly doctors have okayed it for gray area Oncotype patients. I know if my cancer had invaded through lymph nodes I would carry on. Don't get me wrong, I'm still considering it, but as I said before, I'm not worried about a 2% increase in recurrence. At least I got through the most important ones. I'm still waiting on my last two questions from my my OM about the actual recurrence. I have two weeks to make up my mind - I didn't think I would get this sick on my 3rd treatment. I truly believe my body is getting harmed by more than just fatigue and back pain. No telling what it's doing to my heart
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Blair did you have a bone scan prior to starting chemo? As a baseline I had to have a bone scan and an abdominal sonogram before I started. I hope you get some answers for the pain. It sounds so difficult.
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Blair are you taking any steroids? My onc believes the steroids keeps the bone pain from Taxotere away. I had really bad lower back and upper leg pain after the first treatment, and they extended my steroid pills a couple of days.I think you speculated that they weren’t giving you steroids because of your heart issues? They jacked me up on steroids via IV and 3 days after treatment with pills twice a day. The IV is Decadron. The pills are Dexamethasone.
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Kivans - no bone scan, which I thought there would be a concern after my first treatment. My OM is well aware of the pain I had. Now I don't know what to think. I took ibuprofen yesterday and today, and I'm barely getting up or down. It hurts to walk. After my second treatment the ibuprofen seemed to help. As I posted last week, that I thought my back pain was going away for good. Now here I am stiff as a board again.
Orangedaisy - no steroids were ever given to me. I don't think they effect the heart if you're only given it one time. My OM only said in her reply note (actually the note her nurse sent back), that she (OM), could give me steroids, but she didn't say whether or how it would help my back. Assuming now she might think my spine is in pain and not my muscles. It could be my spine is getting irritated by chemo drugs and my muscles are inflamed trying to protect the spine. I guess since I didn't hear back today, now comes the long weekend. It's pretty bad we sometimes have to be our own doctors. I think I'll try Tylenol in the morning and just hope this wears away. It's making me mad I should suffer like this. It feels like someone is crushing my spine down with weights when the pain is at it's worse state or as I stand upright. I tried stretching, making one leg go back behind me, but sitting reclined is my only relief. I'm going to have to sleep reclining on pillows again tonight
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Blair, I wish I could send you my left over steroids. It seems so strange we are on the same chemo drugs, yet the drugs our doctors use manage to.manage the SEs are so different.
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hi ladies
you're welcome! pet photos i've seen on this thread are lovely too thank you for sharing them lizabeth, tina, meowmmy, orangedaisy! i swear most days furry friends help me get through it! congratulations to those who've finished rads and chemo! celebratory hugs are in order and yes, ring those bells loud!
Blair, i have had lower back pain and i am not sure if it's also because of taxol. it might be because since i don't have an infusion this week, the back pain has subsided significantly. i hope yours is because of taxol.
my neuropathy took and extra day or two to resolve this week. i don't know what to expect on my last 2 infusions. hopefully i finish all 12 doses.
i felt wobbly on my feet from last monday until wednesday. that one was new to me. but i forced myself to walk 10 minutes a day veeeeery slowly. and i stay in the yard an extra 10 minutes for fresh air. i am in the suburbs/province this week so fresh air has been a welcome respite from city smog.
my dry cough has subsided but not completely gone despite 2 antibiotics. sunday i go back to the city and prep for tuesday's dose 11 infusion.
I hope your weekend is going well ladies! enjoy!
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Blair...You never had scans prior to starting chemo? That really surprises me. I had to have a total body scan, CT from head to toe, bone scan, a dexa scan and some kind of heart scan before my onco would begin chemo. I hope your pain is from the chemo and it ends quickly should you decide to not have the last infusion. But, if it doesn't ease up at that time, insist on further work-up. I was on pain pills and anti-inflammatories for over a month as mine was thought to be muscular....well, it wasn't. Until I had a CT with contrast, my bone mets did not show up. I sure hope you get relief soon...I know how miserable you are. Like Orangedaisy, they put Decadron in my IV pre-meds. But, I don't take oral steroids.
Kat...hope you feel 100% better soon!!
Day 2 since Taxol...feeling fine. I'm off in a bit to work at my granddaughters dance studio for a couple of hours. My "achiness" will probably hit tomorrow and Monday.
Have a good weekend!
Hope
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nonahope. according to doctors, I should not worry about that. so I will accept any little bleeding, it's not to much as usual due to chemo . I'm outside USA, my husband work in middle east and I got my treatment here.
blair. why the doctor allow you to started chemo without ct and bone scan? if you did that, you will ignore met's fear in your bone . if you haven't node involved, it's not guarantee you are clear.sorry to say that but you should care before any decision. and I think it's SEs of chemo because this back pain gone after chemo.
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Blair when I had my scan it showed arthritis in my lower back. I'm glad I had the scan as it can act as a baseline for future changes. I also was prescribed steroids but haven't needed to take very many of them. Perhaps your heart issues have affected how your side effects are being managed. Like Orangedaisy mentioned the steroids are effective for bone and muscle pain. I wish they were an option for you.
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Gosh - has everybody here had bone scans prior to treatment? It was never even brought up, and as far as it being related to heart disease, I have no clue. Why would they check your bones prior to a breast cancer situation before treatments?
If steroids help with muscle pain, that would definitely help the back pain I suppose, but I'm more worried of my sickness. I literally could not tolerate drink or food for three days. (Other than sipping nasty tasting water to get my pills down). I was so groggy, weak, just slept and kept telling myself this was ruining my body (or maybe my body was telling me!). I think I'd have to be hospitalized for 4th treatment.
I ran out of ibuprofen, so took another Aleve and it seems to be helping me move better this morning. I'm sure this will go away by next week, but I now see a pattern of it occurring 5-6 days after treatment. I'm not scared of it having anything to do with bone cancer, because I don't have metastatic BC. Unless, by coincidence, got it out of the blue, but doesn't explain occurrence pattern after treatment. I do have arthritis mostly in knees, ankles and fingers. I also have mild osteoporosis typical to my age. (From older bone scans, but haven’t had a full body scan ever).My doctors are more zeroed on my heart (except my bs, whom I had quite a time telling her I was more concerned with it than saving my breasts)
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I did not have a bone scan prior to surgery. If the tumor is < 2cm and no nodes show hot on the MRI or mammogram, it's probable stage 1, so I suspect insurance wouldn't pay for a bone scan. If during surgery they find a larger tumor or involved nodes, they start looking further. My MRI showed an internal mammary lymph node under my breast bone on the high side of normal size. My original breast surgeon made it sound scary, but she made everything sound scary. I wound up changing surgeons before surgery. My onc said only 25% of breast fluid drains that direction and she didn't think we needed anymore scans given no other node involvement.
Blair I think the steroids help with both muscle pain and bone pain. What anti nausea meds are they giving you? The steroids plus a/n meds might help your appetite. I was infused with Emend that covered it 3 - 5 days, and injected with Sustol which covered it 5 - 7 days. I only took 1 of the pill form a/n meds and slept for 8 hours, but the meds they give me during treatment didn't make me sleepy like the pills. I worry that your doc is not doing everything possible to manage your SEs, and that makes you want to skip the last treatment.
I see your oncotype score was intermediate risk, so I know it is hard doing preventative chemo. My Prosigna score was on the low end of high risk, and I considered refusing the chemo. In the end I decided if the cancer came back in 5 or 10 years, I would be older and likely less healthy, so it would be harder to deal with. If I could prevent it, I needed to.
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i have had back pain in the past, done tons of pt . Recently canceled a pt appt and that triggered my mo to order a new scan of my back. Currently waiting on results
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Blair, Orangedaisy is correct, steroids attack inflammation in our joints, bones and soft tissues. In my case they also give me tons of energy. They also are used to treat lack of appetite. I don't know if your heart issues prevent you from taking them. I hope you can make it through your last treatment. The most effective number of treatments and dosage is set from extensive research. You are so close to finishing. It's a very personal decision though. You have had a very rough time of it.
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Thank you girls in explaining things. I think you're right about the reaction of my OM team. I have time to think on this, and I do want to finish. I'm going to demand the steroids then, since she did suggest it (rather late I think). I'll ask about heart effects from it. One time shouldn't hurt. I also think because of my age, that my body is not recooperating as fast as it should, and may need more time inbetween treatments. Not sure if that is plausible. I was still exhausted prior to treatment 3. My lab results have been good, so I think they think my body is just ready to go. As soon as my back feels better, I've got to take walks. The weather should warm up here soon. I'll get this figured out and try to strengthen myself as well as psych myself to this last treatment. I'll start Monday by calling this time, but I always end up talking through team nurses.
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Yes, and one other thought. It's not the end of the world to seek emergency care for dehydration and nausea. I believe Meow did that. I remember her posting a picture of herself in the hospital. I think another poster did something similar as well due to nausea and not being able to eat. I say hallelujah to whatever gets you through this.
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i ended up in the er recently, i woke up feeling very lightheaded, called my mo, and she told me to go to the er, they pumped me full of fluids but found nothing wrong so i blame dehydration
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Iris, so sorry you were in ER, take it easy and praying you will feel better soon.
Blair, I didn’t have bone scan but I have PET scan. I will have bone density scan before AI.
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nonahope, thank you! i hope so too! infusion coming up on tuesday!
blair i hope things work out and your back pain resolves. if extending period of recovery between chemo also works then ask for a day or two from your oncologist. I had a CT scan and a bone scan during staging/before treatment started but probably because my tumor was discovered at 5cm and also biopsy confirmed triple negative
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paulette, i am so very aware of how much liquid i am drinking, i keep a count. The med i am on, i was told it was very dehydrating so i keep drinking up my teas and such!
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Thanks again for your input girls. I’m trying to tell myself - you have got to get through this, but my other voice says - no it’s killing me. This is awful. BTW I wasn’t nauseated, but yes, absolutely no appetite. I wasn’t afraid to eat, but couldn’t because of loss of taste and flu weakness. It was hard to cook anything or want to, but I skipped eating. I was sipping water to get pills down, made a breakfast smoothie one day, but a meal was like 5 tricuits with cheese. Not good. I never had a flu feel this bad, and it felt like an eternity to get any relief physically or mentally. I was dreaming weirdly,hoped the time would go by, but it didn’t. Now my back is still acting up. This is Day 9 after treatment. All I can do is sit still most of the time. Now I’m taking Aleve and Tylenol which isn’t much help. Tomorrow I have got to get some answers from OM.
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oh - I forgot. I had 3 different types of anti nausea pills, but was taking Zofran, because it supposedly doesn’t cause grogginess as much as compazine and lorazepam. Lorazepam was what caused me to collapse and bust my lip. So haven’t touched it since. They all kept me from being nauseated, but I didn’t need more grogginess to my already very tired body.
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My 3rd infusion will be tomorrow. today I checked my WBC which is around 2.5 and neutrophils was 1.1 (range starting from 2 ) . she said it's ok to do chemo tomorrow. I want to share my fear with you please. many times I asked nurse if there is chances to spread the cancer with chemo. she told me it's not happened and in the same time nothing impossible! this type of answers make me nervous. all the answers of doctors and nurse should contain maybe or not sure words! I search many times in this board about cases that faced my fears, I mean the spread or metastasized, nurses said the chemo should kill cancer cell or at least stop it's growing! theoretically it's true, what about practices? it will be match with theory or not? I immediately return back to the statistics to reduced my stress and remember the chances of treatment is more than 90% with stage 2, and survival rate is more than 92% with no recurrence for 5 years. but who will guarantee you will stay in stage 2 at the end of your tratment journey?! only believes and hope. that's what I think. sorry.. ooh yeah! if any shrinking happened in your tumour, is that good sign? who had multiple tumour?
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Blair - compazine made me groggy, too. And none of the oral meds were taing care of the nausea. I spent two days in the hospital last round to get the nausea under control. This time, my docs added emend to my pre-chemo meds (IV), and marinol (synthetic marijuana pills) for at home. I now have a standing appointment on Mondays for IV fluids and anti-emetics. I am very hopeful that this will work. Today is day 3 after chemo 3 - the day the nausea tends to hit me hard. Crossing my fingers and trying to stay hydrated!
I did not have bone scans, as there was no lymph node involvement, and my tumor was caught small and early. I know the docs have extensive guidelines to review concerning what tests, meds, and protocols are called for depending upon the individual patient's variables. It is always good to ask why they make the choices that they do, and to push for answers.
Don't underestimate the damage that fall could have done to your back. Chemo interferes with healing. Had you fallen and hurt yourself under normal circumstances, your back would probably be fine by now. But chemo complicates everything, and stops our normal body processes. Remember, those drugs attack all the fast growing cells - which includes healing mechanisms. Having said that, I would want some sort of MRI or other imaging to see exactly what is going on in there. There is a good chance it is just damaged from the fall. And that would give you a little peace of mind. Totally worth it.
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Blair2 - I am on the August chemo thread, but read through many. I just wanted to let you know that Taxol gave me really bad muscle pain, starting around ribs but then changed to mid to upper back. It was actually at its worse for two weeks after I finished chemo. Still achy but going away. I also fell , landing on my elbow. Didn’t think much of it, but I really think it made it worse.
I only got a bone scan because of a suspicious MRI - no other scans. Stage 1 usually doesn’t get scans.
Good luck to you
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Blair, empty stomach will make you nausea. Get some protein drink and crackers. I ate peanut butter sandwich during taxol and AC. I know how you feel of lost of appetite. Make yourself eat, you need protein and food to be strong. Will send you prayers.
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Blair...I agree with eating to prevent the nausea. Six little meals/snacks a day will really make a difference.
Hope
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Yes our bodies need protein to repair themselves and some carbs for energy.
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Hi Girls, Sorry I haven’t replied. I have been reading everyone’s posts. I’m still waiting for my OM to give me more information. Monday’s are so busy, and I want answers from the doctor, and not a nurse. I’ll report her reply later. Should hear soon.
I did eat mandarins during my super sick days. Just one a day. Also some crackers and cheese. By day 3 managed a high protein breakfast drink, but barely got it down. Nausea wasn’t my problem, I just couldn’t eat, and what little I could force down tasted horrible. I was so weak, just couldn’t eat anything. The mandarins were the most tolerable, but I wasn’t eating enough. I felt that all was in my stomach were pills. Water tasted like bad well water with rust in it. Can’t describe it. By last Thursday, I was eating normally again. It hasn’t made me feel much better, but it is what it is. My nose still bleeds and runs. My eyes feel irritated too.
My back got real stiff and stabbing last night. So still bugging me. Ended up sleeping partly reclined. I’m still wiped out energy wise, have not gone anywhere. However this morning I took Tylenol, and no stabbing going on, but sore. This is doing the exact same thing that it did after the other treatments (5-6 days After treatment, acts up), then fades away until I get zapped with chemo again. I am exhausted and look horrible.
We haven’t heard from Rljes in a while. I hope she is ok as well as anyone else going through their hard days.
I hope the steroid suggestionwill give me more energy to eat if I go through this hell one more time. Maybe that’s what I need, but was told by OM last week that my flu like sickness was not treatable. I was surprised she didn’t say a thing about what skipping a treatment would do to my recurrence rate. I should find out today.
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Avalon - Hi everyone - I've had Shingles 3 times in my life - so when I started chemo, they upped my daily dose of Valacyclovir 1 Gram to try to prevent shingles from reoccurring. So far so good. If I even think I'm breaking out - (My Shingles went from back bone around to center chest left side) I double my dosage of Valacyclovir and give myself a dos pack of Steroids I have on hand.
I Know all the tell-tale signs: 1. You feel like someone hit you with a baseball bat in your should blade area 2. Then All over flu like feeling 3. Tiny red dots/Itching.
I'm so sorry you have shingles. Its so very painful. (Ice packs help) and soaking in the bathtub.
The major reason I had a Dbl Mastectomy and choose to go Flat is because of the neuropathy pain from the shingles and was difficult to wear a bra.Chemo #3/ Day 15
I have such bone pain in left hip, radiating down to my foot - its so bad my leg shakes and its difficult to walk. Have a chiro appointment on Monday that offers treatments for chemo patients. Chemo #4 (of 6) on following day - Tuesday. Extreme Fatigue. Tingling and numbness fingertips.CONGRATUALTIONS Lizabeth! Great pictures! Your cold capping makes you look like a speed skater !
Love all the photo's, put a smile on my face.
take care, rj0 -
Rljes, pray that your Shingles won’t come and will not come again period. I haven’t seen you for long time, I worried about you. With this cold weather and chemo I’m not surprised that you have bone pain. Take good care of yourself please.
Blair, I know how you feel about appetite, it happened to me when I was doing AC, truly my stomach was hungry but one bit then I didn’t want to eat anymore. Try to find something you might want to eat. Steroid will help your appetite, it did to me. Pray for your appetite and bone pains.
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