Starting Chemo September 2015; join us!
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I hear ya about people in the next bay yacking about their SE's. I had one talk about her dh's SE as he was getting infusion. She literally was reading the drug info paper off to him very loudly. It was making me feel icky sick to just hear.
On a plus note my head actually looks ok bald. The stubble is gone and the baby fuzz is ok I even took off my hat in the waiting room, in the mo office,& at infusion. I just didn't care. Also I ordered the buffs from natural life's website and love them. They are super soft and made of rayon which smooths my head and small hairs. Gotta order more. No wig for me. She just sits in a bag on a dresser Oh well, maybe someday I'll want to wear her
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Admonkey: I live by the zoo. My main hospital is Emory Midtown (formerly Crawford Long), and that's where surgery, chemo and radiation happen. Because there are so many hospitals so close together, I've also had appointments at Piedmont, Emory, and Northside if the scheduling was more convenient. My oncologist is part of Northside, but has offices at Emory Midtown. My surgeon is based at Emory Midtown, but also has offices at Northside. The only lymphadema therapist (seriously?) at Emory/Emory Midtown was booked solid, so the oncologist office found me an appointment at Piedmont. While I rarely have to wait long to get an appointment, there are days I have to pause and remember where I'm going. Having so many options has made this whole process faster.
The nap has worked! Time for a walk
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Ah Emory. My dad had a liver transplant there. Very nice hospital staff.
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Grammy- I see my MO on Mon and it looks like I'll FINALLY be starting chemo on Tues! I was supposed to start early Sept but had one thing after another problem. My regimen is 6 months total (every 3 weeks for AC and the same for Taxotere). So I'm not done till early May it seems. Then a break of 3 weeks or a month before radiation zapping begins M-F for 6 weeks. So I'm thinking I'll be talking to myself in this chemo thread at some point. lol.
As for ice chips, I love ice anyway so I'll be taking in fluids during infusion either with plain ice or ice packed juices.
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A belated welcome to exercise_guru!! I put you on the list, and we are sorry that you had delays in your chemo but are glad you are here with us. There is a tremendous amount of support on this board.
Hugs to all;
Octogirl
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Finally shook off the week-long headache and nausea-feeling, but am having increasing problems with my lymphedema. LE therapist doesn't answer messages, I don't have a proper compression glove, and I am scared to do the bulky wrap overnght like you're supposed to, because my skill level is not good, I keep ending up too tight
Plus I sat at the pc for 3 hrs, so absorbed I was oblivious to time, and my LE (dominant) right hand and arm are now worse from that I guess I have to learn everything by first making mistakes. Scotland, would you be willing to message me and tell how you are being treated for you LE during chemo? Maybe I can learn from you? LE care in Finland is poor in the capital city; near abysmal in the smaller city I live in
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Tessu, I've only been in LE therapy for a week, and haven't had chemo since. Because my MO referred me to therapy, she doesn't seem to have a problem with treating LE during chemo.
My LE is mild, just barely above the threshold to get treatment. Most weekdays, I go to therapy, where the therapist generally does lymphatic massage and rewraps my arm. The only time I wrapped myself, I got it too tight. I'm pretty sure having it too tight did more harm than good. I have to learn to wrap it properly because I cannot continue to go to therapy every day. I wear the wrap 24/7. It's driving me mad. LE is scary enough that I'm sticking with it. She's also going to teach me to do some self massage.
When I get compression garments, I'll have a sleeve and glove for day and a big oven mitt thing for night. The therapist said that after I'm healed from radiation I can try not wearing compression all the time. She said to start by not wearing it at night because the arm is naturally more elevated while you sleep.
It's ridiculous how hard it is to get treatment. I'm getting most of my cancer treatment at a major university hospital with two locations near my house. They share a single therapist. My therapist told me that I was extremely lucky, because most people can even get a referral until their LE has gotten far more severe than mine. It's mind blowing.
Elevate your arm, keep calling your therapist, and I'll see if I can track some things to help you.
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tessu (and others): The website linked below has a lot of information about LE, with citations to some of the research, etc. It is thorough and I think very helpful:
http://www.stepup-speakout.org
Hugs
Octogirl
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I am so sorry for your loss. What a blessing that you can be there. Get as much sleep as you can.
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Sorry for your loss Southern. I just went through my bbf's sis passing away last Wed and a memorial on Mon followed by burial/mass yesterday. I'm not in chemo yet but still being weakened a lot by infection and anemia, let alone you being in chemo. Wish you much strength to get through! xo
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Can someone help me understand why I wasn't offered perjeta? do you think it was because my tumor was 1.3cm and I had surgery before Chemo? I guess it is too late to second guess my doctor but this HER2+ on the left side freaks me out. I wish I would have known more to ask this question sooner.
Are there certain rules about perjecta like it has to be before surgery? of for larger tumors or with lymph nodes.
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southern so sorry for your loss
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I have heard that perjeta is only approved for neoadjunct use.
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Southern- condolences to you.
Shopgirl- wondering how you made choice between 4 DD v. 12 weeks of taxol. My doc has 4 DD in my plan but I'm considering changing to 12 weeks to try to avoid neuropathy. My Mom got neuropathy and it affected her quality of life. I'm scared it will happen to me. Thanks for sharing your thoughts. I have a week yo decide.
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Friggin A! So 2 weeks ago I broke my tooth and had a temp fix to it as not a good idea to do crown especially with the infection I still have. Tonight, another tooth broke! Luckily no pain like there wasn't last time, but damn! Again??? I've never broken a tooth in my life until recently and now its 2 times. Ah! Going to call the dentist to get the temp thing on it again. Thankfully no chemo yet so I can take care of this still! :mad:
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Southern Charm- so sorry for both you and your hubby's loss. Hugs and a shoulder to cry on across the miles. Please get some rest and take the time to take care of yourself and breathe.
Artista - So sorry you have had to go through so much just trying to get to chemo. Hang in there. Last year I had so much sub-par dental work done because of emergencies and horrible dental insurance just take the time and get it right.
My MO said something that upset me and has me in a hole I really can't see out of. When I asked him how he would know if the chemo ( and all the hell I am going through) worked, he said that I just have wait and see if I get a recurrence. If no recurrence, then the chemo worked. I know there is no certainties in life but I would have expected a little more science then just waiting for the other shoe to drop. It just depresses me. It makes me feel very alone.
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Grey, Thanks for your kind words. As for your MO, doesn't he do any testing or scans to see at the end? I would think that is protocol to do a check to see if there's any sign of it or not otherwise how do the people like in stage for know there is no evidence of disease (what they call NED). After I'm done in 6 months I'm due for another CT scan to check on the nodule in my lung, whether it's gone or not to get a final verdict on if I'm stage 3 or 4.
Hopefully someone can tell you for sure but it doesn't sound right that after chemo they don't test anything to see the effectiveness of it. Also, if you are ER+ then we get put on hormone pills to suppress estrogen production. Depending on whether you are pre or post menopause is what you get for now they say 10 years. After that then yeah, it's a wait and see for the rest of our lives unfortunately which is why we need to live for each day and enjoy life. All of us have something we enjoy even if we are alone. I have my guinea pig, music and internet message boards that I enjoy. Do what you enjoy the most as it helps.
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Southern Charm- so very sorry for your loss. I wish you the physical and emotional strength for this hard time but also permission to break down in the face of so very much
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round 3 of TC done! Took 6 hours with the new regimen to prevent a reaction (2 hours of fluids, Benadryl and two hour slow-drip of taxotere with simulataneous extra steroid and then a nice saline flush after the cytoxan...whew!). And happiness...no reaction! Plus the nurses sang me happy birthday. So sweet
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So very sorry for your loss, Southern ((((hugs))))
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Jabe happy bday
Ariista oh no another tooth!
Shelly I am triple neg grade 3 so fast growing cancer and my mo recommended DD. We talked yesterday about neuropathy and he originally said if the neuropathy got bad I could stop after 2 taxol since I would have had 80% of my total chemo. He doesnt want permanent damage and he said quality of life is more important. He also said if neuropathy SE are too harsh or bother me too bad the first round I can switch to every 3 weeks which would add 3 weeks to my end date or do weekly which would be 12 weeks total. The 3 week option would still be DD. I just need to decide and let him know before my next infusion in 2 weeks to have his office change it with my health insurance co.
I was also concerned about the bone/muscle pain on taxol. My mo said if it was him he'd do the DD with meds for pain but is concerned with neuropathy. I can take b vitamins to help which I am starting today and eventually glucosamine . And if necessary he can prescribe gabapatin for nerve pain.
We also talked about the bad bone pain I am getting with the neulesta auto injector. He said that the auto injector pens are 6cc and can't be lowered in dose. I could have gotten a 3cc dose with a regular injection which would require me to drive an hr into the city in major traffic rush today to my treatment hospital. I said I'd muster the higher dose. My bloods have been great and I don't want to mess with what is working. I did get a nice script for Percocet for the bone/ muscle pain that taxol can give which will help with the neulesta. Not crazy about Percoset as it gives me a buzz but if it takes away the pain I'll try it.
Oh and with the weekly or 3 week taxol I wouldn't need neulesta but my white cells and neutrophils would be in danger of dropping and the risk of getting an infection would be greater. Tough decision I need to think about this week. I may lean towards the 3 week option. I don't think I want to do the 12 week taxol. It was hard enough doing the crappy AC and just the thought of being weekly in the chair is too much It's really starting to hit me me hard thus the wall I hit this week.
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Southern - I'm so sorry for the loss of your mother in law. Tough to lose her so young. Be okay with getting the rest you need through this. Hugs across the miles.
Grey - Yes, uncertainty is what we will all learn to live with. My surgeon explained I would have chemo pre-mastectomy "so we know whether / how much the chemo works." But no one has said when when / how the tumor will be tested pre-surgery, so what the heck is the point? I share your skeptcism. Having said that, I agree with Artista: we need to grow and take joy in each day we have. If I can buy even just a year or two of life from this treatment, I'm going to enjoy the crap out of the SE-free time I hope to gain.
tessu - Keep at your self-care for LE, you will get more skillful at wrapping. Making errors is how we learn. You will make it through this. And hooray for no headache or nausea-feeling, that is awesome!
Jabe - Congrats on putting round 3 TC "in the books"! Glad you had no taxotere reax. Woo hoo!
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In other news, my cat came through her cancer surgery yesterday. The vet removed nine MAST tumors from her ear, eye and head. She looks like Frankenstein and HATES her e-collar.
She wolfed down breakfast and is resentfully hunkered down by the heat dish.
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Oh wow Minnesota, poor kitty! Glad the sx went well and hope she feels better soon. I hate seeing those collars on animals. We know why but they don't.
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Love all the humor!
Tuesday finished my 2nd round of chemo. Had another reaction. Warm feeling in chest , itchy throat feeling making me cough and gag. Told the nurse from the beginning " MO said this time we will start with the caytoxan first then taxotere " she says" MO did not tell me that" ugh !! Ok so I get my reaction! Why does the nurse not listen to the patient? All she had to do is call MO and ask! Why does the MO not communicate??? So frustrating! Well I did it pulled through it. Even though at the end I had warm feeling again it was horrible but I did it! Prayed my butt off! God helped me! , that's for sure!
Keep on fighting ladies!!
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southern I'm so sorry for your loss. My heart goes out to you and your husband and your family.
Grey and Lisa, I'm having chemo first and my tumor has shrunk from 7cm to about 1.5cm. My MO says that the surgeon will do a breast mri after chemo to know what she is dealing with so I'll have some information then. Lisa if they don't offer ask for one!
Lisa sweet pic of your poor kitty! I hope she heals quickly.
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Aga so sorry that happened. Next time tell the mo office about that nurse to make sure you don't get her again.
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aga, so sorry you had a reaction. The nurse I had the last time told me they always give Taxotere last. The first time they didn't and I had worse se's so this last time I specifically asked for the same sequence as the 2nd time and the nurse said that is how they are supposed to give it C, then T.
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mom2boo - Thank you for sharing the size of your tumor. I, too, have (had??) a whopping 7cm tumor and am hopeful I will get your results!
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I asked my surgeon and he said that I will probably have another PET scan after chemo before surgery. But my MO can already feel that the tumors have shrunk with chemo.
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aga: you absolutely need to talk to your MO about the reaction! That's what I had and it's the beginning of an anaphylactic reaction. No playing there--they now give me slow-drip of T, extra fluids, extra steroids, and Benadryl
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