CMF Question
Comments
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@Dianarose, sorry but I don't know the answer to your question. I can sympathize some because my sleep has been quite irregular lately. I don't always know why I wake up, but I often do two or three times during the night. My fifth treatment was last Wednesday and so far the side effects are still minimal. I guess boring chemo is good chemo.
Congratulations to you on being halfway through!
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I am half way through chemo and I am tired all the time, emotional, and my voice is raspy. Is this normal, because it sucks. I have no energy at all.
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Hello Pink Sisters!
I finished chemo about 2 1/2 months ago. During that time, I think I experienced every possible side effect, with the exception of nausea or vomiting. About 3 days ago, my legs started to ache. The pain seems to be getting worse. It feels alot like the pain I would get the day after my Nulastin shots, like a really deep in your bones pain. I started radiation about two weeks ago, but checked with my radiologist this morning, and he told me radiation would not have caused this new symptom. I also called my oncologist, but I can't get in to see him for two more days. I was just wondering if anyone out there has ever experienced this. It just seems strange to me that I would get this symptom so long after my chemo treatments ended. ( Because this pain is in both legs, the possibility of this being a blood clot seems pretty unlikely.) I don't have swelling or redness, but the bottom of my feet sort of hurt.
Any thoughts?
Melissa
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Intrepidspirit-Are you taking any hormonals? So far I have not had to have any of the Nulastin shots and from what people are saying I am glad of that. My Mo did say that some of the side effects can and do happen after you stop chemo. He said I could lose my finger and toe nails after I am done with chemo. Well isn't that just f'n dandy. I hope he has some answers for you and it is not serious. Did you lose any hair or your eye lashes from CMF? I hate the wig and really miss my eye lashes. Hope they grow in as quick as they fell out.
Take care and I hope everything turns out ok.
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Hi DianaRose! I also was pretty exhausted in the latter part of my chemo. Yur raspy voice may be from the dry mouth that accompanies chemo...some mornings, I would have to dribble water into my mmouth because it felt "stuck shut." But you are half way there. So just think that you are on the uphill climb now and you have almost gotten there.
Hi Intrepidspirit! Hopefully you have gotten into see your onc by now. If not, insist on an appointment. On the other hand, I did have terrible pains in my shins at the end of chemo and for a while afterwards. I would be woken up during the night with the pains. I saw my onc who told me not to worry. I can't remember when the pains went away, but they did go away. And even though you are not on chemo right now, it takes a while for all of the drugs to completely leave your body. I would say that I started to feel normal in terms of energy and aches and pains, etc. about 6 months after I finished. Let us know how you are doing. And congrats on finishing chemo!!! YAY for you!!!
Hugs to all.
Mandy
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@Mandy1313, do you know if mouth dryness can cause coughing? I don't have a fever or feel sick or even particularly thirsty, but I have noticed that I cough more often than I used to...not a lot, but it makes me wonder. I need to remember to ask Dr F about that next week. I had #6 today and still feeling OK, just a little tired for the rest of the day after I get the infusion.
@Dianarose, I'm sorry to hear you are feeling so tired. But you are halfway there, and you have a chemo break for the next couple of weeks, don't you? Hang in there!
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Hi curveball! Don't know about dry mouth and coughing...but that is something you should tell your onc about. The cough may not be from dry mouth. Feel better. :-)
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@mandy1313, I will mention it to Dr F, but I wouldn't bother taking anything if it is just due to dryness. It doesn't even reach the level of being annoying. I'm just a tiny bit concerned it might be some type of infection since chemo suppresses the immune system. If it's just dryness I'll try to remember to drink more and maybe use some saline nasal spray. Saline was suggested to me a few years ago when I had a cough that wouldn't go away after a cold. My primary doctor thought the cough was hanging on because of the dry air in my office.
We take so many medications already, I am reluctant to add one, with possible negative interaction or side effects, for such a minor problem.
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Hi D-
I loved your reply! What a hoot! I am totally with you as far as the hair and eyelashes. I had really long, thick, hair, and long eyelashes before chemo. I lost my hair in the second month of chemo. My eyelashes fell out sort of randomly, over a long period of time, so I had time to adjust to the freakish new look I was developing. Get this--my eyebrows stayed with me all through chemo, even weeks after I was done. Then one night, my eyebrows started itching. I rubbed over them gently, and to my horror, they just fell off!! In one fell swoop--no eyebrows! I don't go out without makeup because I don't want to scare the neighborhood kids! My hair has started to grow back--right now it's about 1/2 inch long, and it is growing straight up. Even the sides. Am I going to end up with Marge Simpson hair?! It seems like it is taking a really long time for my hair to grow back. My eyelashes are coming in--it took about 2 months. They aren't long enough to look like real eyelashes, but I get really really close to the bathroom mirror every day just to check the progress...About a month after chemo, my fingernails started acting up. First, it was just one nail that broke about halfway down my nailbed. About a week later, another nail broke. Now all of them are so short it hurts. Not only painfully short, but they have ridges. Oh joy. I have residual neuropathy in three fingers on my left hand. You can't believe how ANNOYING this is. I hope this is temporary--but I just read some posts from others who had really bad permanent neuropathy, so I shouldn't complain.
I'm about halfway through radiation therapy, and after chemo, it's a walk in the park. I think after chemo, anything will seem easy. How awful that we have to poison ourselves to be cured of cancer...Thank God I had a great onco, because I did a whole lot of whining for three months. I figured there was no better time to use drugs, any drugs, to help me get through the nightmare. (Altho I never smoked any pot--only because the one side effect I was spared was being nauseated. go figure. )
why do you ask if I am on hormonal therapy? I'm not.
please write back, you make me laugh and that's the best medicine ever!
Melissa
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p.s. the wig thing never worked for me. Can't they make them with a lighter weave? It was like wearing a bathing cap. That was $285 bucks down the drain. ( altho I can still submit a bill to my insurance company--wigs are covered! sweet!)
I was given a once in a lifetime opportunity to go to an LA Kings game, it was the last game before the playoffs for the Stanley Cup. The seats were on the ice--I actually had better tickets than Matthew Perry--he was sitting BEHIND me! anyway, I wore my wig to the game, thinking for sure I would be cold sitting so close to the ice. Within ten minutes of sitting down, I had to whip my wig off because I was sweating! I watched the whole game with my bald head out for all to see. Wigs suck!
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Hi Melissa: After I had finished chemo and shortly after I started radiation, I began to get pain in my arms, eventually the shoulders, arms and hands all hurt. Since it was equally bad on both sides I figured it wasn't from rads. When I checked with my medical oncologist she denied that it could be a side effect of chemo. She sent me for a neck (and brain?) MRI and had me see a neuro-oncologist. By the time I got my appt with the neuro-oncologist I had done some reading up on it and found that arthritic-like pain is a fairly common SE of some chemotherapy treatments. I printed the papers that I found and brought them to the appt with me. The neuro-onc agreed that this was likely what I was experiencing and said it would probably go away on its own in 6-9 months. And it did - it started in Feb and was gone by October. But while it lasted it was very painful and would wake me up at night and was always much worse in the morning.
My medical onc had wanted me to start hormonal therapy (Tamoxifen) at the same time as rads. If I had, I would have blamed that. So I'm glad I didn't start until after rads as it can be hard to figure out whats causing these SEs when there are so many factors at play.
I would definitely have your issue checked out.
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I had #7 of 26 weekly infusions last Wednesday (1/4 done--yay!) and still doing OK, although more tired with the last two than I was with the first five. My blood count is still OK, and I still haven't had any problem with vomiting or diarrhea, but I do feel very gassy/belchy/bloated. I asked my onc about this at my appointment last week, and if there were any foods I could avoid to reduce this, but he says not really, it comes from the fiber in fruits & vegetables and I shouldn't really avoid those. He did suggest an OTC medicine that can reduce gas, but I haven't bought that. Right now it's more annoying than anything else and I feel a little nervous about piling meds on meds on meds. I made a bit of pickled ginger (like you get with sushi) so I can have that to nibble on if my tummy feels unsettled.
After I went home it occurred to me to wonder if the root of the problem is that CMF or chemo in general kills or unbalances the "good" gut bacteria, and if that's what is going on, possibly a probiotic would help, to replace the ones that are killed and get the internal flora back in order? Did anyone else on the thread have this problem, did you try a probiotic, and did it help? Or did your doctor say to avoid a probiotic? I will send Dr. F this question by email but he probably won't be back in the office til Tuesday at least.
And how are all my fellow CMF-ers doing anyway? Been mighty quiet around here lately.
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Curveball:
My gynecologist, who was treated for breast cancer a year before me, mentioned that she used probiotics throughout treatment. She was treated by an oncologist who used some complementary therapies alongside the conventional treatments. My onc was much more conservative/conventional so I never mentioned use of probiotics. Remember though that the chemo will affect the cultures in the probiotics too so they will be less effective, esp in your case since you are having weekly treatments.
Whenever my stomach felt unsettled, I would nibble on crackers -- something like Carr's Water Crackers or the Trader Joes equivalent. Sparkling water also helped.
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The old fashioned lemon drops with sugar on the outside worked to settle my stomach and the gassy feeling. I went through several bags of them!
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Hi Curveball!
I found ginger helped me with that upset stomach from chemo. I had ginger flavored hard candies and I drank "ginger beer" which is not beer but a strongly ginger flavored soda--I bought mine at Whole Foods. I also was unable to drink water which for some reason made it worse--so I did drink sparkling water; and San Pelligrino's limonata and aranciata. I did also eat a daily yoghurt as a probiotic.
Hugs to all!
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Where are you at, DianaRose, and how are you doing?
Melissa, are you still doing O.K.with the rads?
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Hi everyone- my computer has been in the shop for about 2 weeks. It needed a new motherboard. It is nice to have it back. I will be done regimen # 4 on Monday. I have 2 more regimens to go so I will be done Nov. 5th. I am so looking forward to that. The whole wig thing, drawing on the eye brows, and putting on the dam eye lashes is starting to wear on me. Without them I look like Yoda from Star Wars. Not a pretty site. The hot flashes are the worst side effect yet. Some days I get them every 15 minutes. Does anyone know of any natural way to help with this? I can't even imagine how they will be after my ovaries come out plus the hormonals. Maybe the hot flashes will kill the cancer cells. I know I am well done. I am starting to get the lines in my nails. I really hope they don't fall off.
I hope everyone is doing ok, Diana
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Ok, so here I am with an update if the original ladies I had spoken to are checking in here and might see this (Mary and RitaJean)...or anyone else who would like to comment.
My Mom had had six CMF sessions and is now on CAF. I took her to her first CAF a week ago and had plenty of questions for the doctor. He explained the switch was his plan all along as cancer gets accustomed to certain treatments and they like to change it up sometimes to confuse it. He actually used a warship analogy where at first you hit the lump in one way and then bomb it another way.
Well, one week later and she went back today and the lump is responding by shrinking some more. His estimate was that CMF shrunk it 25% and now the CAF is starting to work too just one week later. She said he said he was surprised and happy when he felt it.
So I am so happy tonight. Just wanted to share.0 -
Hi Carol:
Nice to hear from you again and glad to hear that the chemo is having the desired effect. Your mom may find the CAF treatments more difficult after the milder CMF. But now knowing that is tumor is shrinking is very encouraging and may make it easier to tolerate any unpleasant side effects.
Mary
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Hi Mary,
Nice to speak with you again. I've been reading at this site but haven't posted since I had mentioned the change in chemo she was going to have. And you're right. Her side effects seem to be a bit more severe. She received the treatment a week ago Friday and that weekend she felt fine, but midweek she started to feel real sick and sluggish with no appetite. She had to go in and get the neulasta shot and mentioned to the nurse about how she was feeling and the nurse said it was a normal reaction after the red devil, Adriamycin. Two days after that, she had the followup with the doctor who was very pleased about further shrinkage of the tumor so quickly after the first round of CAF.
It's just such a relief that chemo seems to finally be doing its work. I got so worried that it might be because of her age (79) that her body wasn't allowing the flow of chemo into the lump or something. But apparently the CMF was like the first group of soldiers going into an area to fight and probably did a much better job than one feeling from the outside could even know, and this stronger CAF is further attacking. It's the first time I feel like we can really do this.
The doctor said with cancer treatment, you have to be patient. And I am hopeful. And I'm thankful to ladies like yourself at this site who contribute to the sharing of information.0 -
Ritajean- did you loose your sense of taste while on cmf? The only time I can taste anything is if it is sweet. I bought a bag of freshe picked apples at the farm and couldn't even taste it. Nothing tastes good. It sucks.
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Carolln....YAY!!!! I'm so glad to hear that a change in the treatments is resulting in a shrinkage of the tumor. What an uplifting update from you. Hug your Mom from me and tell her that she's on her way to beating this beast. Thanks so much for letting us know. We love to hear good news! Please keep us updated as she continues the journey.
DianaRose, I didn't lose my entire sense of taste but things sure tasted differently. There were many days that I had a metallic taste, too. I think the chemo changes our entire system. If it's any consolation, I quickly recovered my tastebuds when the treatments were over! :-) Hang in there. You are doing a fine job of getting through this!
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Hey Rita and gang...just wanted to check in and send hugs...almost 12 years now...
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Hi Rita! How are you?
Thank you for the well wishes. I tell my Mom about the things I read here. Since she's of the generation that didn't get involved with computers, I'm like her liaison gathering info for her and posting here on her behalf. She wants me to tell all of you ladies a big thank you.
I'll come back with more updates.
Take care,
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Oh Lisa, You are my inspiration! Wow! Almost 12 years! You are proof that there is life after breast cancer and you give us all hope and positive vibes. Thanks for coming back and staying around to offer encouragement and to share your knowledge.
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Carol, give your Mom a hug for me ;
btw, my mother is 92 and uses the computer(not for too much but
she learned when she was 88.)
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Lisa- 12 yrs is awesome.
You are an Angel. 0 -
Diana we were in Maine this May..spent a week from Bar Harbor to York
Beach..Actually we drove from San Diego to ME and back..8,000 miles.The miracle was that my husband and
I
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Lisa- I have my chemo in York. My brother has a cottage there. I love York. Wish I could afford to live there. That is a long time in a car with a husband.
Did you go to the Golden Rod candy store when you were in York. They have the best candy. I have never been to Bar Harbor. I am hoping to do some road trips next yr when all this treatment crap is behind me. I am really missing my hair and eye lashes lately. Gets me down sometimes. 0 -
Diana, the treatment really does seem to last forever..but there is the light at the end of the tunnel.
I used to have a worry/sorry chair and I would sit in it just to do that. Then I would try not to when
I wasn't in the chair..it helped. I decided to learn something when I was having chemo., so I did
genealogy and digitial photography. It kept my mind going off of any treatment..this is a good place
to hang out ..sending hugs,
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