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exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 1/24/2017 10:23 AM (GMT -6)   
So I've been learning about Taxol since that is the next chemo med I'll be taking, in my ACT regimen. (AC was Adriamycin and Cytoxan, taken together, 4 treatments, 3 weeks apart). I start Taxol on Jan. 30th, and have 12 treatments, one week apart.

Although most of the side effects are the same-- hair loss, fatigue, nausea, sores inside the mouth, there is also the possibility of neuropathy in the hands and feet. I made sure with my onc that it is okay to take L-Glutomine, as was suggested in another forum, as a way to possibly ward off neuropathy.

With AC the actual treatment time-- sitting in the chair with the IV bags-- was about 2 hours, followed by another 2 days of getting IV fluids for 2 hours each day. With Taxol the treatment time is 3-4 hours, but no coming back on other days for IV fluids.

With AC, at the end of the treatment the nurse would apply the Neulasta patch on my stomach, and it would automatically inject me with the drug 27 hours later (to help bring up WBC). With Taxol, it is not followed by Neulasta. If my WBC is too low, I'll get an injection of Neupogen. While on AC, during the 2nd and 3rd weeks when I was not receiving treatment, I still had to come into the office twice a week to take my blood and check my WBC. With Taxol, there is just coming in every Monday to get it. They'll take my blood first and make sure my WBC is high enough. If it isn't, then I'll get a shot of Neupogen and have to come back another day for the Taxol.

Another thing with Taxol is (for just the first 5 treatments) I have to take some steroid pills. Twelve hours before treatment I take 5 pills, then 6 hours before I take another 5 pills. Then for the second Taxol treatment, I take 4 pills 12 hours before, and 4 pills 6 hours before, and each week it's decreased by one pill. My Taxol appointments are scheduled anywhere from 9:30 am to 10:30 am, so I'll be taking the pills the night before, as well as setting my alarm for 3:30- 4:30 am to take the second dose!

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 1/24/2017 7:32 PM (GMT -6)   
E, please, please do not ever feel embarrassed about complaining. The beauty of HW is its a peer support site, we don't allow any comparison to someone else. Every person's situation is unique & their own. If you are having a rotten day & need to rant or vent about something please know its allowed here. Sometimes just getting junk off our chest helps a little.

You know we really never know just how much we can take or handle until we are put in a situation. I am talking dire circumstances such as yours. You had a lot going on before the cancer dx. I feel certain the cancer dx felt like the final straw. With everything going on how could you not be getting depressed. The financial part of your treatment with these high co-pays, the days that you feel so bad all you can do is curl up in a ball & pray for relief. Its ok to have your melt downs as I call them. I have had more than my fair share of those over the years because of health problems. I am one of those that has to be in control of me & when things happen that I feel I am losing that control, well its just not pretty. I still saw you are doing an amazing job of holding things together.

Back in the day when my health was in such a mess my PCP put me on an antidepressant with the agreement I would get in with a psychologist. He referred me to a lady that turned out to be my saving grace. Of course that was the good old days of cheap co-pays, nothing like what people pay today. Had it been that high I would have really had to limit seeing her. I do hope at some point you can find someone that will agree to see you on a sliding pay scale.

My friend that had breast cancer struggled when her hair fell out. She had long hair too. I remember when she went to the Cancer Society here, they offered free wigs to cancer patients. She said the wigs they offered were just absolutely awful looking. She did not get one, she left there in tears. She said it was another reality check that I have cancer. She said you know I understand they are not going to offer a high end wig, but in all honesty I would have gone bald before putting one of those on. She did buy her own wig that really looked good. And she did at times go bald out in public or sometimes wore a scarf or hats. It took her some time to get there for sure & she said it felt like she was taking back some control by doing this.

Will be curious about the results of the testing for the brain fog. I find the testing you described interesting.

Above all cut yourself some slack & give yourself a hug each day. Take care.....
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 1/26/2017 11:28 AM (GMT -6)   
Thank you so much. This forum has really helped me. No where else do I get EVERYTHING off my chest. There is only so much I feel like telling the people I see daily. And if I told them how I feel each and every day, they'd get pretty sick of me, pronto!

You have been so helpful and kind. I'm always glad for your responses. I don't blame your friend for not wanting to wear an ugly wig. Losing (long hair) is SO hard anyway, and then to replace it with something that looks like it could be part of a Halloween costume is insulting. I'm glad she found a wig she felt good to wear. I have been bald just about 2 months, and just in the last couple of weeks I have felt comfortable to go bald inside my house around my husband. I do not think I will ever go bald outside. I have worn just my turban to just go out to the mailbox, or to briefly water plants. I know that there is a small risk that the hair loss could be PERMANENT. That would truly be dreadful.

I am curious about the results of the brain testing, too. They talked about possibly being referred for "therapy", and I am even more curious about that. I literally cannot imagine what type of therapy is going to help me when I have a toothbrush in one hand and toothpaste in the other, and it takes me 60 seconds to figure out what to do with them. So we shall see!

My son is coming home from college for the weekend, so I am in an especially good mood. My WBC is high enough that we can actually go out! Woohoo!

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 1/27/2017 2:54 PM (GMT -6)   
E, good to read your son is coming home for the weekend & that you can venture out of the house. I hope that you all have a great weekend. You need it for sure.

Oh, I do know people really get tired quick of hearing about any type of illness, lol. I keep that an off topic, lol.

I want to mention something to you that I keep forgetting. Most people with private insurance have high copays on their meds. On your meds always go to the mfg website & look for coupons that offer discounts. These can be used with your insurance. Another source is a place called GoodRx.com. Check it out as well. I use GoodRx a lot. An example, my husband was seen in ER & the dr rx'd a script for antibiotics, 14 pills $92. By going to GoodRx & printed out a coupon we paid $22 & some change!! Since we do not have private insurance any longer we always use GoodRx. My husband is fortunate that he can use the VA for his every day meds. His insulins are just so expensive.

I need to run for now, I have to meet my grandson at his bus stop. Have a terrific weekend!!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 1/27/2017 2:55 PM (GMT -6)   
E, good to read your son is coming home for the weekend & that you can venture out of the house. I hope that you all have a great weekend. You need it for sure.

Oh, I do know people really get tired quick of hearing about any type of illness, lol. I keep that an off topic, lol.

I want to mention something to you that I keep forgetting. Most people with private insurance have high copays on their meds. On your meds always go to the mfg website & look for coupons that offer discounts. These can be used with your insurance. Another source is a place called GoodRx.com. Check it out as well. I use GoodRx a lot. An example, my husband was seen in ER & the dr rx'd a script for antibiotics, 14 pills $92. By going to GoodRx & printed out a coupon we paid $22 & some change!! Since we do not have private insurance any longer we always use GoodRx. My husband is fortunate that he can use the VA for his every day meds. His insulins are just so expensive.

I need to run for now, I have to meet my grandson at his bus stop. Have a terrific weekend!!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 1/31/2017 4:33 PM (GMT -6)   
Luckily my co-pays on my meds has never been more than $25. For my husband's diabetes medicine it is much more, so we'll have to check out GoodRx for those. Thank you for the tip! It's the co-pays for each visit that is killing me-- $75 each visit!

The worst thing about my taxol treatment is having to wake up in the middle of the night to take the pills. I took my first does of pills (steroids) at 10 pm, then when I was trying to go to sleep around midnight, I kept thinking "I'll be getting up in 4 hours, why bother sleeping?" Even knowing that I HAD to sleep, so I eventually fell asleep around 2, then got up at 4 to take the second batch of pills-- with food-- so that totally woke me up. Then I go through the process of "why bother going back to sleep" when my alarm will be going off again in a few hours. But then I eventually fell asleep for a couple more hours. So, sleep is just totally thrown off on Taxol Mondays.

I'm not sure if I mentioned that I finally lost my eyelashes. There is a good reason animals have lashes... they act to keep dust and debris from landing in your eyes that you aren't even aware of, and that I am keenly aware of all the time now! My eyes are always watery from whatever keeps landing in them. My leg hairs, however, still continue to grow. Boo!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/4/2017 11:47 AM (GMT -6)   
Morning E. Wow, I had no idea about the Taxol regime!! Talk about messing with a person's sleep pattern. Several years ago my internal clock went crazy. I went from sleeping at night to not!! I would stay awake all night & prowl the house like a cat. I had to be very quiet because I didn't want to keep the husband awake. I did not sleep during the day either, never have been a day time sleeper. If I was lucky I would sleep 2-3 hours at in the wee hours, it was just nuts. Once in a great while I might sleep 4 hours. However, my body became so use to it I am guessing. Years before all of this started my pcp gave me a script for 7 sleeping pills. He said turn the clock around so you cannot see the time & I did. Last summer a friend of mine said after 15 years of taking sleeping pills her dr cut her off. I cannot imagine taking them that long. The 7 days I took them I had the worst hangover & fog from them. Anyway, her niece suggested she try Tylenol PM without the Tylenol in it & it worked for her. So, I bought some with the idea if it worked for her, there was hope for me, lol. I took it for 10 days & got my clock turned around. Once again, I sleep like a normal person, lol.

Oh goodness, you are absolutely right about how eyelashes protect our eyes. I would not have even thought about it until you brought it up. Does sunglasses help you any when outside? Still have hair growing on your legs, wow. I would have thought no hair there either. Mine is patchy on my legs but still have to use my electric razor, lol.

Before I forget, I discovered another website that offers discounts like GoodRx. It is called BlinkHealth.com. Has the same concept as GoodRx. On both of these sites you type in the name of the medication, dosage & if its pills the amount & it gives you the discount price. I am going to see if Blink gives better discounts. I cannot tell you how much money we save by doing this. Both of them are accepted by the major pharmacies. As I said before, my husband gets his meds through the VA, but once in a while he will get a script for something short term.

I hope you had a good visit with your son last weekend. Of course my 2 kids are adults & I am lucky that we live close to each other. My daughter comes over on the weekend & visits or we go running around. I see my son 2 days a week when he drops my grandson off. I take him to school for him 2 days a week & meet him at the bus stop 5 days a week. I can't imagine not having them close it would be very hard for us if we didn't.

I have not been on the computer for any length of time lately. I have got to find myself something different for my laptop. I have it on the kitchen table & am finding I am sitting too low & its putting a strain on my neck & shoulders. I was dx'd with osteoporosis of the spine in my early 50's induced by steroids. I was on them for 3 1/2 yrs constantly plus a lot of oral steroids for a long time & little did I know that was not good at all. I just knew it kept my pain level down well enough for me to continue to work for that time. I went from being 5 "2" to 4 "10"!! I have to blame myself for not having my priorities right & not questioning the the dr & doing my own homework.

I was talking to my sister last weekend & her 74 yr old neighbor was just dx'd with breast cancer. Her dr recommended a lumpectomy, chemo & radiation. She instead opted for a mastectomy & I understand why. At her age she is not interested with the potential side effects of chemo. She is a widow & lives alone & just does not want to deal with it. I do not blame her, at her age with little help because she lives alone. She does have an older sister who lives nearby & they are quite active together. They hop in her car & take off traveling, lol. Looking at things from her perspective I understand her side of things. Our mom was dx'd with advanced terminal lung cancer at the age of 72. She lived in a small town & medical care was the pits. Good drs didn't ever come there to practice. Most of them were fresh out of medical school with a huge debt to pay for schooling. They would offer a contract if they stayed for so many yrs they would pay off the school loans. Once they met the terms of the contract they were gone. I obtained a copy of her records to bring with us here. While going through her records I found a chest xray from the year before that had suspicious findings & her dr never addressed those findings. It just made me sick. My mom had a very sharp mind but according to her medical records you would have thought differently. Mom was offered chemo & radiation. She declined the chemo & said I have been given 12 months to live with or without chemo. There is no way I will do chemo & be sick with a short amount of time to live. She did some radiation that shrunk the tumor enough so she could sit in a chair or be propped up in bed without a lot of pain. Knowing chemo would not change her outcome I said mom it is your decision, I will support whatever choice you make. Honestly, I am glad she didn't do chemo, her quality of life would have been affected a great deal. She lost a dear friend to lung cancer that went the chemo route. He was in & out of the hospital a lot & very ill from the chemo. Mom made it 11 months, we made the most of our time together those 11 months. I got to know my mom on a totally different level & very thankful she agreed to come here for treatment.

Radiation does cause some fatigue at first. Mom handled it like a trooper. The first treatment she was scared but after she saw what was involved she did fine. The guys over in the PC forum that have radiation speak of having some fatigue for a bit.

I hope this finds you doing good. I do enjoy reading your posts & always look forward to them. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 2/5/2017 8:57:02 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/5/2017 4:02 PM (GMT -6)   
Hi Susie,
I am having my husband check out GoodRx and Blinkhealth.com for his meds. He takes 2 different insulins--lantus and humalog, plus Trulicity for his diabetes. And after having a heart attack about 7 years ago (he had a stent put in), he also takes amlodipine and metoprolol for his heart, plus atorvastatin for his cholesterol.

I know it's easy for me to say, but please don't blame yourself for taking steroids all those years. You have dealt with so many health issues, and I think our first, natural, reaction is to accept what the doctor says and follow directions. If you have nothing else going on in life (your own, your spouse's or your kids'), then maybe it's more "natural" to do lots of homework about your health and the medications and treatments the doctors suggest. But you've had so many issues, as well as your husband, and your sister with breast cancer and your mom with lung cancer!

I have time now where I could do research, but I don't have the brain power for it! Chemo fog has really changed me. I used to be a multi-tasker, both with mental and physical tasks.... now i am a no-tasker, lol. It's all I can do to just make it through the days and go to whatever doctors visits are scheduled. In my time off from work I started something I had always been interested in--ancestry.com, and I have totally messed it up! I'll click on my great-grandmother, and it will say she's the mother-in-law of my 6th great-uncle! I have no idea what I've done.

You definitely are lucky to have both your grown kids nearby! That is what I wish for myself for my entire life. I know I've said mine are 21 and 22. The 21 year old, who just visited from college, found out he's been accepted into one of the law schools he applied to, with a generous scholarship! Woohoo! He's applying to several schools, and in the next few months he'll continue to find out where he's accepted, and with what scholarships (which are absolutely necessary in our situation). So for the next 3 years he will most likely live in state (Florida), or his other choices were in other southern states and all the way to the DC area, not exactly close by, but at least it's not cross-country.

My 22 year old is another story. He is every bit as brilliant and accomplished as his brother, but sometime during his sophomore year in college he became "lost", is all I can call it, and the journey he's been on since has been a nightmare for us. So up until a couple years ago we thought this year he'd be starting a PhD program in engineering, around the same time his younger brother would be finishing college...... and instead..... we have no idea what path he's on, or if he'll ever join the "real world" again. Sorry I am sounding mysterious, I am still trying to protect his privacy, even though I am babbling on about him! It is just the most difficult thing for a parent to have NO IDEA what your child is doing or what their future holds....let alone where he could be living!

My employer and my disability carrier have each been telling me different things about when I am supposed to return to work. I know it's a fluid process, dependent on the information received from my doctors about my ability to work, but it is very frustrating that they each aren't saying the same dates. I'm sure it will work out, but it causes me a lot of anxiety.

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/7/2017 9:30 AM (GMT -6)   
Morning E, yes back in the day I was much younger & all I wanted to do was keep working. My dr that was giving me the steroids, I first knew him on a professional level. My boss knew how I was struggling & suggested going to him for a consult. I told him upfront I have to keep working, staying home is not an option, plus I loved working in the legal field. I had a great boss & made decent money. I worked a lot of long hours, lol. It was not the typical 9-5 job, not by a stretch, lol. We really did not have the access or knowledge available back then either. I ended up crashing after all the years of being on it, ended up flat on my back in the hospital for a week. My wonderful old gp hit the ceiling when he found out how long I had been doing Decadron shots. His big concern was me having a stroke or heart attack, my BP was off the charts. He informed me what steroids did long term none of it good either. Of course now if you give me oral or IV steroids I go into congestive heart failure by day 3. He knew the dr very well, personally & professionally & with me sitting there he called him I cannot repeat what he said to him either, lol.

I lost my dad unexpectedly 18 months prior to my mom passing. He had a quad bypass & replaced the aortic valve. He was 72 yrs old. When they did a procedure the morning of the surgery the dye used put him in kidney failure which we were aware of he had bad kidney issues.. He needed the surgery regardless. His hospital stay was a complete nightmare. My brother & I spent lots of time in the administrator's office trying to get him proper care. The head nurse of the cardiac floor could give medication at her discretion to the patients. They were giving him an anti-psychotic drug that made him just crazy. He was hallucinating really bad, so they decided he had dementia, was an alcoholic or a sundowner. He had not had anything to drink in over 25 years. You cannot imagine the rage in me, he was defenseless with these people. I did get that medication stopped. But a nurse did give it to him another time & I found out all he$$ broke loose once again. I saw lots of patients on that floor that had no clue where they were or how they got there. They eventually told me he needed to be put in a nursing home. That was not going to happen. I got busy & called a dr friend that I knew was friends with a head of a well know rehab hospital. He made a call & they sent a liaison to the hospital to evaluate him to see if he would be a candidate. They accepted him & I took him by car to the rehab hospital. After they did a complete physical on him & the drs all met the very first thing the head dr said was "your father has been heavily over medicated" & we have already started removing these medications except any meds related to his heart condition. In 7 days my dad was back & his mind was clear as a bell. Because of the kidney issues the rehab hospital did not have dialysis facilities so I took him out patient 3 days a week in the evening for this. His kidney dr said his labs were showing he had some kidney function returning so he stopped the dialysis & he had a massive heart attack the day before he was to be released to go home finally. As it turned out he only had 15% function, I do not understand why the dialysis was not done on a taper to see if the trend continued. He was doing the max allowed for dialysis. Losing both that close together just took a toll on me.

I can relate to the kid problem. My daughter lost her way too & it took several years to get back on track. I feel blessed that she found her way, it could have been a disaster. She married a guy that had a 2 1/2 yr old girl. Eventually they went to court & won custody of her. My daughter was not able to have children & this little girl filled that void in many ways. She always told her SD, I am not your mom I want to be your friend, you have a mom. Their marriage lasted 15 yrs & she was the positive influence in her life & still is. They have a bond that is incredible, my daughter was & is the mom she never had. Now the girl is 21 & just clueless & so immature. She has been taking college classes since she was 17!! She is still doing basic classes & has no clue what she wants. It is so stressful. She has a BF & he has 2 grown kids & they are the very same way!! My daughter says mom that generation these kids are lost & they still expect the parents to support them. All 3 go to school to keep the money coming in from parents & grandparents. I think my daughter is right about that generation.

Yes, Lantus is so expensive. That is why my husband gets all of his medications through the VA. I do hope that either of the 2 sites can be of help. Sure saves me money on my BP meds monthly.

Maybe you need to call your drs & speak to whoever is filling out your paperwork & get them up to speed & explain how these different dates are creating nothing but problems. As of now who is your main dr in charge of your care? If there is one, perhaps that is the one that needs to be doing your forms to eliminate all of chaos.

I hope this finds you well. Today will be a good day for me, it is fairly warm out plus the sun is out. My kind of day, lol..

Take care...
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/7/2017 8:57 PM (GMT -6)   
I actually had a bad night after my Taxol treatment yesterday. I was fine, except for fatigue, until I went to sleep around one a.m. Around 1:30 a.m. I was woken up by severe nausea--throwing up in my mouth!!! Gross!!! I spent the next 3 hours with my head over the toilet dry-heaving.

So, lesson learned... I will take my anti-nausea pills on Taxol days even if I'm not feeling nauseous. I definitely don't want it sneaking up on me like that again! Ew...

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/9/2017 9:21 AM (GMT -6)   
Oh no, how awful. I have been on Zofran for years with chronic nausea. Its always something it seems. I hope you are better.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/9/2017 8:00 PM (GMT -6)   
Yes, Susie, I do feel better. I hope you are having a good day as well.

So no eyelashes is not fun-- dust and debris land in my eyes all the time, and I guess not having them really effects how I look! Even though (occasionally) I'd put on some liner, and eye shadow, folks still keep saying to me "Are you tired today?", "Don't you feel well?", "Have you been crying?" In my past I have used false lashes maybe 3 times when I was trying to look particularly alluring, lol. And although I remember not liking the feeling of something weighing on my eyelids and I would take them off as soon as possible, I decided I would try false lashes yesterday.

Um,.... it's a little different now! To put them on, as I recalled, you place them up against your own lash line with a trace of glue running along the bottom of the falsies. Well, now I have no lash line to place them up against! It's like randomly aiming the glue-y strips somewhere on the lid, trying to get them where the lash line used to be, but there's nothing there to "catch" the falsies and help them stay put, or stay in an even line, or not just ooze down into the eyeball!

After a few misaligned attempts, I finally got both sets of lashes in approximately the right spots. I was pleasantly surprised that they didn't feel as "weighty" as ones that I'd worn in the past had felt. I only wore them for a few hours yesterday, but now I feel a bit more confident that I'll be able to put them on again sometime when I don't care to look unwell, tired, or like I've been crying. Plus, the falsies will keep dust and debris out of my eyes!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/13/2017 8:18 AM (GMT -6)   
I leave in a few minutes for my third Taxol. Which means I had to set the alarm for 3:30 am to take the steroids.... so another messed up night of sleep.

For someone who was as filled with dread about my very long hair falling out, I think I ended up handling it remarkably well. I put on a nice-looking wig, and basically when I got "done up", I looked just like I always did. Everyone knows I didn't handle it well when my right breast expander failed. I had linked my physical recovery to my fight with cancer, and when one side of me completely collapsed it made me feel like I was losing against cancer. The right side REALLY does look bad. Not only that there is no breast there, but there is a failed expander underneath, and there are ripples, and lumps and cave-in areas, and just a whole lot of ugly there. But I got over it.

Then a couple weeks ago my eyelashes fell out, and i really have been surprised how much a loss of any lashes diminishes my overall look of well-being. Well, today, it's my eyebrows-- about 80% gone. This would have been a HELL of a lot easier to take if the hair on my head and lashes and brows would have all dropped out at once.

I'm up for some more b!tching and moaning, but I have to leave for chemo. Hopefully I'll chill out and be in a better mood when I write next.

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/13/2017 2:20 PM (GMT -6)   
Hi E, thats ok come here & get all out. A person can only keep so much in for so long then its like a darn bursting at times. I will be honest, I totally forgot about losing the eye lashes & even the eyebrows too. I think like you, perhaps it would have been easier to lose everything at once & just be done with it all for the time being. It is like you have one thing happen & then the other shoe drops.

Have a quick question, the chemo you are getting, does it cause any bone pain? Let me know if so, I read another interesting post in the PC forum about bone pain & chemo.

Has anyone told you that you are one he$$ of a trouper? Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/14/2017 7:05 AM (GMT -6)   
I'm not expecting bone pain with Taxol as much as I'd been warned for it during the AC treatments. During AC, the nurses had said to take Clariton on chemo day, and for 2 or 3 days after, and that it would have an off the label effect of preventing bone pain from chemo. So I did take Clariton on those days and I never did get bone pain. Hopefully that will stay true this time as well.

I took my anti-nausea meds preemptively yesterday so I did not have a repeat of my experience from last week--yeah!!

S, I hope today finds you well. Oh, it's Valentine's Day! Happy Valentine's Day, lol! We've been married nearly 27 years so it's not like a big romantic, special day. Plus my WBC is low enough that I have to avoid going out in public the rest of the week, so no dinner out. But I am definitely grateful that my husband turned out to be my best friend and the best helper ever in my times of need.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/15/2017 6:10 AM (GMT -6)   
I may have spoken too soon about not having bone pain from Taxol. I realize that for the last couple of days my knees have hurt periodically (and although I'm in my mid-50s I never get knee pain, or any joint pain), and yesterday my upper right thigh bone hurt. These pains aren't long-lasting, thank goodness. (Edit: since I wrote this post I have also woken up in the middle of the night last night with severe leg bone pain, and today I am having the bone pain in my teeth and my upper and lower mandibles. The pain is pretty debilitating. I called my onc's office and due to the hour someone will have to call me back tomorrow.)

A side effect may be very poor sleep. No matter what time I go to bed or how tired I am, I awake after anywhere from 2-5 hours. Today I woke up after 2 1/2 hours, my mind fully alert. What happens on these days are by noon my body and mind are very fatigued, but I do not nap, I am basically a blob on the couch from noonish onward!

I use the early morning hours to write letters (actual handwritten letters!!), as well as TRY to email folks, although my typing skills are mainly lost in my chemo brain fog. I make so many mistakes and the emails take so long to complete.

I've spent this morning trying to plan for my son's college graduation, coming up in May. I will have JUST finished chemo, and will be in between surgery and radiation starting. So the timing is as good as it can get in my situation.

Does anyone have any gift ideas for a college grad going off to law school? He's been accepted to 2 so far, one down here in Florida and one in the DC area. He's waiting to hear from a couple of others, so no idea where he'll be going yet. He has a laptop of course, and he'd probably want to pick out his own IF he did need one. Do law students actually need suits to wear? Or do they dress as casually as undergrads? Is a fancy watch or fancy briefcase appropriate at this point? Susie, I know with all your career in the legal field, and your friend's son who went to law school, you probably have great ideas. Ideas are welcome from anyone!

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 2/16/2017 2:33:31 PM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/18/2017 10:41 AM (GMT -6)   
Well yesterday was a tough day. I returned to the Brain Center for the results of my testing, and it was as bad as possibly could be. In any kind of testing I'm used to being in the TOP one percent....... now I am literally in the bottom one percent of brain function, in ten out of 12 categories. I don't have the energy to write more about it now because of the other thing that made yesterday a tough day--apparently a crown fell out, leaving a raw nerve and me screaming in agony. It didn't happen until after doctor's hours. From what I've read online folks with dental problems during chemo either had to WAIT until chemo was over before taking care of their problem, OR, chemo has to be delayed to take care of the problem.

I see my onc on Monday, presumably for chemo, but I'm hoping she'll say I can delay it to get my tooth taken care of, at least with a temporary. However, even this option causes me anxiety.... I had my chemo treatments timed to end just in time for my son's graduation, and depending on how long I have to delay chemo, this throws a wrench in everything.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/19/2017 9:31 AM (GMT -6)   
E, about your son's attire for law school, I would say casual dress. I know here it is casual. The only time a suit was considered was if the student was wanting to work at a firm during summer months & that depended upon their dress code. You many want to consider asking your son for some ideas about what he would like to get for a graduation gift. I would say no to a briefcase for the moment unless he expresses the desire for one.

The firm I worked at was casual, the attys wore slacks & shirts unless they were going to the courthouse. My boss that I worked for was a rancher & he wore jeans to work every day complete with boots, lol. He did wear starched jeans & a starched white shirt. His cadillac was his pickup truck, lol. We worked in what is called pre-lit, meaning the claims that did not have a law suit filed. He only wore a suit when necessary, lol. If you are talking corporate law that is a different ballgame, lol, suits all the way. Our clients were average people & found the attys not so intimidating to talk to. Us girls wore either suits or dresses, never knew where we may have to go on any given day & had to be dressed appropriately.

Oh, I swear tooth pain is just one of the very worst to have. Hopefully you can at least get a temp put on ASAP. Naturally something like this has to happen after office hours.

So sorry to read about the chemo brain fog results. Try not to let is get you down. Hopefully there are some reasonable options for you to consider for this.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/19/2017 9:41 AM (GMT -6)   
Susie, I hope everything is okay with you and your husband and family.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/19/2017 7:57 PM (GMT -6)   
Thanks for the ideas. I'm surreptitiously texting with his girlfriend to get clues as to what he may need or want for a graduation gift.

I've been using a lot of Orajel for my tooth, plus got a temporary filling kit at the drug store, and that has helped a LOT. I am curious to see tomorrow if my onc says to keep using the OTC temporary stuff, or if I actually will have to see a dentist to get a "real" temporary fix. I just don't want anything to delay my chemo schedule.

Although going bald on Taxol is a major side effect, I obviously didn't have to worry about it since I went bald during my AC chemo treatments. However, just before I started Taxol my doctor said "Don't worry if your hair starts to grow in with Taxol, sometimes it does, but that doesn't mean the chemo isn't working." I guess sometimes people think they aren't getting a proper dose of Taxol if they see hair coming in.

Well, guess what?! I have stubbly hair growing back on my head. I still LOOK as bald as a cue ball, but I can feel it, and if I look very closely I can see it. I am blond, and this new hair on my head looks like the hairs I've always had on my arms--VERY blond, see-through almost. The hair on my head was never THAT blond, and I certainly don't want it to all grow back see-through, which I don't really think will happen. But to have it grow back an even paler shade of blond than I naturally was would be wonderful... maybe save me from putting highlights in my hair!

I WISH other people could see my new growth; it really is totally invisible, but I am reaching up there touching my scalp all the time to feel it. It's embarrassing to be able to make this comparison, but my head feels like about a three-week growth of leg hair. Ew, I know, right? But on my head that is a good thing!

Post Edited (exqualls) : 2/19/2017 7:03:01 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 2/20/2017 9:08 AM (GMT -6)   
E, I just read a post in the PC forum about someone needing some dental work done that is on chemo. Their dr advised not to have extractions because of the chemo & healing problem. The dr said it was fine to have a temporary crown put on. So, perhaps this is something for you too. Maybe this can worked in with your treatments so there is no delay. So glad you found something to get a little relief with.

Ah the girlfriend is an excellent source for ideas for your son. I bet she will come up with some ideas for you. I am sure he will be surprised with whatever you decide on.

Wow, you are getting some hair back even with your chemo, how crazy is that, lol. I think its awesome. Yep, I am afraid I would be reaching up there & touching it too. My friends hair came back kind of curly after chemo. She had fairly straight hair to begin with, she ended up with body in her hair.

We finally had a little rain here it has been a dry winter for us. I am in north central Texas & we are having a lot of spring like temps which I love. My body just does not want to move well in cold temps. I have a pool & over the weekend I had to go buy shock for it as I was getting a little algae in it. I don't remember ever putting shock in this early but we have had a mild winter here. Trees are beginning to bud out & there is a big silver leaf maple in the yard behind mine. It makes a huge mess in my pool in the spring & fall. I work on it every day to keep it clean. Each year as I get older I find this task a little harder to do, lol. Speaking of cleaning the pool, I better get out there & get busy, lol.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/23/2017 2:01 PM (GMT -6)   
Well, I am a bit out of sorts for various reasons. Yet again I am "throwing up in my mouth"....I put it in quotes, as my PA believes that it sounds more like acid reflux. After it happens, of course I feel nauseous and just gross for hours. I am taking Pepcid everyday, but it's not preventing it. I am also still experiencing bone pain every now and then, although I am taking Naproxen for that. I still have my tooth pain until I can get in to see my dentist (March 1). It is mostly managed with orajel and "denttemp", but it still hurts now and then.

Worst of all is that I have not slept the last 3 nights because my cat is missing! He's an indoor cat only, and when my husband went to put the garbage cans out one night, he forgot to close the laundry room door behind him, then forgot to close the garage-to-laundry door, and then put the big garage door up to get the garbage cans out, and the cat slipped out! It's been pouring rain for 2 days, night and day. Today is day 4 now with him being missing. I can hardly stand it.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/25/2017 9:38 AM (GMT -6)   
My cat is still missing and that's about all I can think about. I have a feeling I'm projecting some of my emotions about my older son being "lost" onto my cat. Whether that's true or not, it doesn't diminish the non-stop worry and wild imaginings of what could possibly be happening to him. He's an indoor cat only, and our hood has preserve areas and lakes all around, so there are raccoons, opossums, tons of deer, alligators in the lakes, and scariest of all, bobcats that live in the woods just at the end of our street.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 2/27/2017 3:08 PM (GMT -6)   
My cat came home today, safe and happy and hungry, while I was at chemo! Yeah! This is the first time in a week that I have not had this horrible dread and anxiety eating at me.

Anyway, chemo thread here! Had my fifth taxol today, and told her I'm still throwing up in my mouth and still having bone pain. So she switched the nausea medicine, but told me to just use OTC products for the pain, and IF those don't work, to let them know and they'll consider something with a narcotic (she had me on Naproxen, which only reduced the pain somewhat, but didn't get rid of it). I am not expecting any, or much, relief from OTC pain killers.

The hair I noticed growing back on my head isn't getting any longer. Perhaps there are more hairs per square inch, but the length isn't changing. I find myself getting more depressed about my looks; the weight gain, the baldness, the loss of lashes and eyebrows. When I first had surgery the doctor's office gave me info about something called "Look Good Feel Good", where you sign up to go to a seminar and get free makeup and demonstrations about how to do your brows and lashes, etc. I never signed up because I really was doing okay with my looks until the lashes and brows went. Their lack changed my face so much.... made me "look" like a cancer patient, even when I had my wig on. So in the last couple of weeks feeling like there's no way to NOT look sickly anyway, I basically stopped wearing my wig almost 100% of the time --in the house. For the few things that take me out of the house I would put a wig on. So I signed up for the seminar, but the nearest date I could get isn't until mid-April. Oh well, better late than never.

I started to realize that it may effect my husband seeing me bald all the time. I don't mean that I look "ugly", because I know he doesn't see it that way. But it may make him focus on "my wife is going through cancer" every second of the day, never giving his brain a rest not to instantly think of that. So, starting yesterday I decided to wear a wig as much as absolutely possible.

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 2/27/2017 2:17:31 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 3/2/2017 8:22 AM (GMT -6)   
Morning E. I have hit a rough spot & will be seeing about getting a massage to see if that will help. I have to do something. It will take more than one for sure.

I am so glad that you kitty came back. My cats except for one were all indoor cats. The one that would not stay in all of the time was a mess, lol. He would holler & carry on until we let him out. He always stayed very close to the house. I had a retired school teacher that lwas a neighbor. She had a Siamese that took off one morning & the cat showed back up several years later!!

Oh, I am so glad you enrolled in the class. Hopefully you will learn some new makeup tiips. It will also get you our of the house for a bit rather than just going for treatment.

Is this a medical oncologist telling you to take OTC stuff? I do not for a moment believe that is right to tell you take it when you have already been doing that. I am afraid I would call the office & ask to speak to the nurse & let her know OTC stuff is not working & you need some help. She can talk to the dr & you will have to pick the script up at the office, it cannot be called in. This is one time you will have to advocate for yourself.

I don't know what has happened this morning here at the forum but for some reason as I sit here typing your post back in November came up instead of the recent one. Anyway, I was reading again what your son said about the hair loss. All I can say is his comments to you were absolutely wonderful. What a fantastic young man!!

I don't know, I sort of have mixed emotions about wearing the wig inside around hubby. Yes, it is a dx no one ever wants to have, no more than his diabetes is something no one wants. Maybe he is in a bit of denial I don't know. That is very much possible. I guess what I am saying is do whatever you are good with.

Our weather is so crazy right now, 80's one day the next morning in the 30's. Its really wreaking pure he$$ with my body, lol.

This is a short one, have appt with the dentist at 10:30, need to get ready. Talk to you soon. I do hope you are feeling better. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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