Anyone starting chemo August 2016?
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You ladies are a few months ahead of me, I did CT from Nov-Jan and I am doing my last week of rads next week. My question is--did any of you lose your taste and if so, how long until it returned? I'm 9.5 weeks PFC and can only distinguish between sweet/salty/spicy but no actual flavors yet. Starting to get concerned!
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Cali- I love, ❤️ your hair!!!
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Cali your hair looks awesome! I'm ready to dye mine....
Hi Pamela!! I didn't do rads, do you think you lost taste during rads or still lingering from chemo? My taste buds were horrible during chemo. Someone said things tasted like dirt and that's all I could use to describe it. My taste buds seem to be ok now- I do feel like I need to salt stuff more still, and I still have an off and on again cut on my tongue which makes things burn, but that might just be me.
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Definitely the chemo--specifically Taxotere. I lost it the day after Thanksgiving and by the time I was scheduled for another chemo, I would get the same sense I get now, just knowing if it's sweet or salty but no flavors except cinnamon.
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Pamela- I think it's worth asking your MO about it, I'm sure everyone is different. I was actually surprised mine came back quickly. I think one of the few things that tasted good was cinnamon lol. I remember thinking Pizza sounds good, I can taste it, smell it, and then when I took a bite - bleh! I never had the metal issue, but tried drinking something out of a metal container and it tasted gross just last week. Hang in there, it's so frustrating to not be able to eat and enjoy!! Also see if the rads have anything to do with it???
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ajbclan--I feel like she always says "everyone's different". She did say the drug stays in your system 2-3 months so maybe I just see what happens in the next 3 weeks.
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That's a l-o-n-g day, Kelly! Too bad it wasn't more successful in terms of wins, but good exercise and team building. :-) I'm ready for giant steps, but baby steps it is. Mumble, grumble!
Looking good, Caligirl!
Lyn
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Thanks y'all ...I still startle myself when I look in the mirror 😱
Pamela....my taster was off for a long time from the chemo. It didn't get any worse during rads tho. I enjoyed only something spicy like salsa with chips.
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Had my grandson Camden come up for a sleepover this past weekend. It was a reward for a great report at school. Those of you who've been around probably remember how hard the beginning of Kindergarten was this year, with the school telling my daughter they thought he was unteachable. She just had a huge team meeting at his new school and was amazed with their report. The head teacher reported that they all believe that Camden is extremely smart, since January he has learned all the letters of the alphabet, learned their sounds in a week and a half, and has completely mastered all the sight words his classmates learned since September. They feel that in many ways he is more advanced than even regular grade level kids, needs to be in a transitional autistic 1st grade class next year. (My DD thought he would need to repeat K to try to catch up.) I've been learning sign language and he signs fluently and was so cute teaching me some words I didn't know!
So I'm exhausted, slept 12 hours last night, and am still in my pajamas this morning! But I thought you'd like to see him again. We had gone to the park for him to ride his scooter and he got really hot (hence no shirt!) He's not smiling as he just looked up and I snapped the pic! Just love his eyes! He is my oh so special love!
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Dara- how I wish you could send off that school report to the old teacher! I'm so glad things have turned around, he's adorable!!!
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And Cali, what a great pic, and your hair is so much longer on top than mine! I love your color and cut. I guess I should break down and go get a trim, my back is especially long and shaggy.
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love your new do Cali!!! Super cute!!
Dara, your grandson looks so sweet! So glad that his new situation is so much better!!
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Dara...shows you how some educators are in the wrong job...so happy for Camden!
Thank you Dara & Kechla
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Go, Camden, go!!!! I am so happy he is doing well. And what a cutie!
Cali - I can't wait until my hair is that long! I'll give away my wig that day. Hopefully just another month or two. I did Taxol after Josie was born, so I feel like I am a month behind you all with the hair.
Pamela - I am sorry about the taste issue! I didn't have that, but most of my lingering SE's are slowly fading. (Goodbye night sweats!)
Hugs to you all!
Annie
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Hi All!
Pamela23 - I just wanted to answer your question about lack of taste. I'm almost 13 PFC of TCHP but am continuing the HP through September. I'm also 18/28 rads. I experienced the off/metalic taste on and off during the TCHP. Then around day 8 of rads I lost about 90% of my taste buds and smell. Talked to RO who said it could not be due to radiation and to talk to MO who in turn said of course it could be due to rads. Whatever it is due to, I have it and no one know for how long. I'm hoping that it disappears as mysteriously as it appeared after I'm done with rads. It really affects quality of life, eating something and not being able to either smell or taste it! Wishing you all the best and hoping your taste buds return to normal soon!!
Could not figure out how to undo the bold!!! LOL
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Thanks makeiki3-- I did chemo mid Nov to mid Jan and the tastebuds left the day after Thanksgiving. I haven't seen my MO since my last infusion in Jan because I'm under the care of my RO right now. I don't think it's because of rads, I just think everyone is different and mine haven't come back yet. I know of a couple people who had radiation near their throat and theirs were burned off and came back 6-12 months later. I figure if they endured so much damage and they still came back, my will eventually come back too. As long as I know it'll come back, I'm ok. Just surprised it's not more common.
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Just thought I'd check in and let you know how things are going. They were going great. Eyebrows and lashes returned, lymphedema resolved, new haircut to shape up the thinning hair after cold-capping, energy returning and I had started working out again... Then lucky me, while on vacation, my period decides to re-emerge (5 months PFC). OMG it was completely ridiculous! Luckily, the bad days did not start until after I returned home (this would have been impossible on the plane). There is no way I could have even left the house for at least 2 of the days. To say it was heavy is an understatement. Sorry to be graphic, but I bled through about 20-30 tampons and 15-20 pads per day. On several occassions I was changing every 15-20 minutes and rushing to the bathroom with my legs clenched together. First ridiculous day I changed clothes 4 times... Luckily, at the same time, I came down with an upper respiratory virus (which I'm still battling 2 weeks later). So by the end of my period which lasted about 9 days total (4 full days of ridiculousness and 2 of "just" extremely heavy!) I was feeling pretty bad. Went to see my regular doctor for the virus and he decided to do a CBC as well. Turns out my hemoglobin was down to 7.8! Had I still been bleeding, he said he would have done a blood transfusion. Instead, I am now on antibiotics and iron 3 times per day. After about 5 days, I am finally feeling like I am not going to pass out every time I stand up.
So... for those of you who expect your cycle may return, take heed! Stock up on some supplies and if you experience this type of flow, be sure to get lots of iron early on. My MO nurse said this is not uncommon. Hard to say what the next one will be like. If it returns again next month, perhaps more normal, but if it has another 3-4 month lag, she said it could be the same. Can't wait. Ugh!
On another note, at my 3 mo checkup today, my MO nurse said they are now recommending probiotics for all their patients. There are new studies emerging that patients who were taking probiotics during treatment responded to their treatments better. I've also read several articles lately about having a healthy "microbiome" helps fight cancer.
Hope everyone is doing well and on the road to recovery!
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Kechla, sorry for the return of your period. That just sounds awful! What form of probiotics are recommended? I was using yogurt, but found out that any yogurt that is pasteurized doesn't contain the live cultures needed to be effective.
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Ohmigosh, Kechla, that sounds horrible! I hope your anemia resolves quickly.
Lyn
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Dara, I know. I was kind of hoping that I'd just slip easily into menopause... There are some yogurts that have added active cultures. I just take a supplement called Metagenics UltraFlora Spectrum. I used to have a lot of digestive issues and found this one through my nutritionist. I'm sure there are other goods ones out there as well. It is best to try to find one with multiple strains. This one has 7 different strains. This one (and most probiotics) should be kept refrigerated to extend the shelf life. If you have not been taking probiotics, you may need to ease into taking them otherwise can end up with some diarrhea. I never really had that issue when starting to take them, but I know some do.
Thanks VLH - Feeling better each day.
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Thanks Kechla. I'll go slowly. I'm on a specialty prescription for psoriatic arthritis. You know you're in trouble when the specialty pharmacy mailing the prescription includes a free box of anti-diaherra medication! LOL. My co-pay for the drug is $1,079 per month so I guess they felt sorry for me and included the freebie!
Kelly, are you still around and how are you feeling? Are infections etc subsiding?
Hi everyone else. I'm doing well, but now have to do some PT for IT band syndrome. Glad the pain I've been having wasn't more serious with the joints! I'm really DONE with hospitals for a while!
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Hi Everyone! Kechla! Geez I can't imagine! But I'm so thankful you put it out there and shared, so I'll pack supplies when we go out of town. I really don't want to have that happen lol. I'm glad you're on the mend now. I haven't had too many issues on the Tamoxifen so far- only been a couple of weeks now.
I have been taking probiotics for years.....definitely recommend, but that can be confusing on what to take. I seemed to do well on just a Trader Joe's brand so stick with it and rotate in another one to get different strains.
Dara- thanks for asking- it's been a confusing ride with the different surgeons, and throwing in an infectious disease dr lol, and with not a lot of communicating between them. Bottom line the infectious dr did do a blood test...I want to get a hard copy of it at some point as I'm still not clear what he tested for. He told me protein level, and then his assistant said white cell count lol. Surgeons office referred to protein levels. Whatever it was, it's normal. Both surgeons saw the area this week and felt it looked good. No one wants to hang their hat on saying it's gone, including the infectious dr lol. So it's a wait and see if something flairs up. I will be keeping my antibiotics handy just in case. PS said we're good to go to start fills now and exercise and PT. Finally moving forward.
It's crazy all we've been through already! Hope everyone is doing well.
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Morning Ladies... I have been seeing the Lymphodema specialist in my BS office.. I see to have some lumps around my breast and a larger on near my lymph noid incision that they ar watching and she painfully is massaging out ...lucky to not have to have had it drained. I'm finally feeling better and darn if I'm not back at work full time 🙄
Kechla ...of course it would return while on vacation. I don't miss that. Glad things are improving in some areas...baby steps.
Kelly....so glad things are going well for you after all you have been through.
Dara ....how's the hair going? Mine is still growing slowly ....we took a work picture and I felt I looked like a fuzz ball head 😜 Yikes that's your copay?? That is pricy.
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Hi Cali, I just mentioned you in the hair thread to DianaRose. She's debating missing a family wedding because of her hair. I mentioned that somewhere you had posted a beautiful picture of you attending a wedding. My hair is supper slowly growing. Your front and bangs are way longer that mine. I think I have a brunette version of Judy Dentch going on.
I started with some physical therapy yesterday as my hip and knee has been bothering me. The orthopedist thought it is IT band inflammation. The eval showed that it's all structural, everything from my hip to my foot on my left side is a bit out of kilter and causes the pain. Problem is that it's nothing that can be cured, we're just hoping for some temporary relief :-( Even my affected boob is on the left!
Kelly so glad things are now straightening out a bit. So what is your new plan? Will you have to do radiation or just hormone therapy?
Hope everyone else is doing well. Happy Friday!
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Ok- I don't think I ever commented on the cute hair pics by all. I really think some of this is our attitude. I wasn't happy with my scalp, but once I got some hair on it, I started ditching the beanies (never did wigs or really scarves unless it was hot). I still will wear a beanie if it's cold....my ears get cold easily! I think it's really just sad someone would skip a family event just based their hair, but we all do what we need to do. Dara- I would go out with your head of hair! I know people try and figure out why my hair is short lol. Let them wonder- do I want it like this? I'm ballsy? Sure- it's my only time to be "ballsy" --- I would never had cut my hair this short, so why not embrace trying something different for once. Life is too short! I colored my hair myself. I looked at that Herbatin, but something turned me off- I don't think it came with the applicator etc. So I just went back to Target and got a box. My daughter really wanted me to do a fun color, but I didn't want to use a permanent color of purple lol. So just went brown. It has some copper. So that's my hair story. Embrace it! I honestly just don't care what others think. If I make you uncomfortable or it's a reminder of cancer, good. What we went through and still go through sucks. I think people think we have surgery, chemo, radiation, etc and then poof we're better. Not really. Ok there's my soapbox lol.
Dara I'm on Tamoxifen. Once in a while i feel some pangs, not sure if it's the meds. If I stay in menopause she may switch me to something else....like an AI? geez...looking at your story not sure if i want to switch now lol.
IT band- I've had that years ago. Keep with the PT, should help. Just need to be aware that it's a hip issue- your hip is tight, that band goes from your hip to your knee from my understanding. When I was running I learned to stretch my hip and I haven't had an issue since. So you CAN get rid of that!!
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Hello my fellow BC travelers. I have not been good at keeping up routinely but when I do play "catch up," I am amazed at your tenacity and your strength. So many stories. So many busy lives. Families and work. Struggles and additional physical illnesses. What complex beings we are. You are all incredible and I am humbled to be a part of this group.
To recap, I am still healing after the complications of bilateral mastectomy surgery Dec 21, 2016. In January necrotic tissue had to be removed from both sides and a wound vac was placed on the larger wound right side. It was used for nine weeks until the depth of the wound would no longer accept it. But now a month later, healing is still not complete enough to start radiation.
It's been nine months since my diagnosis, so this has been a long drawn out process. I have ceased to be surprised by any delay. It seems to be the norm rather than the opposite.
Hair regrowth is happening but not in any attractive fashion. We have two mini-schnauzers and I seem to be favoring their hair-do's. Both in color and style. I am grey and white and longer on the back and sides than the top and crown. It has no body but it doesn't appear to be the "pig-bristle grey" I had in much smaller quantity before losing it all to chemo.
I take Letrozole for my "five year pill." I notice I have hot flushes again. I am well past menopause so thought this was a thing of the past. Occasionally I have taste issues but usually not too bad or for too long. My MO has alerted me to possible SE of joint stiffness upon arising but that it should loosen up as the morning progresses. So far I haven't noticed that. I have psoriatic arthritis so I'm aware of such things.
I'm getting back to a mild exercise program. Treadmill for 20 minutes and recumbent bike for 15 minutes each day gives me a nice uplift. I can do both regardless of weather conditions and in the safety of my own home.
To you dear ladies, I send my best wishes. Thank you for writing your stories. I will probably be more attentive (at least to reading) as I begin the radiation portion soon (I hope). Blessings, one and all.
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barbarau, that really stinks that you are still healing from surgery. Are you seeing a specialist for the wound? Is it still painful?
How are you doing emotionally with such a drawn out process? It's hard to be patient through these kind of setbacks.
Sending positive thoughts your way! Hope the radiation is smooth sailing once it begins.
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Barbara, like Kechla, I'm so sorry for all the complications. It sounds like you have a positive attitude. I always say we just have to take it one day at a time, but when it drags out or other things crop up, it sure makes it challenging. I was on Arimidex at first but wound up with so much joint pain that my MO switched it at the end of the month. The I tried Extremestane but my insurance co-pay was $379, so after a month I switched to now to Letrozole. My joint pain is better, but I believe it's the result of an anti-prosoriatic arthritis med that I'm on now. Hang in with everything and I'll send good thoughts your way every day.
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Barbara- it's so amazing to hear even through all of that additional "stuff", you're back on the treadmill. What a super long process for you. Thank you for sharing!!
Dara glad your joint pain is easing up no matter what is helping!!
Wishing you a nice week everyone!!
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Sometimes this cancer battle is just miserable ... So sorry Barbara.
I've been doing well just got hit by these stupid emotions today 😳
Hope all are well and enjoying the Easter season
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