CMF Question
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Dear All
Just checking in. Firstly good news..... Had hair cut and highlighted last week and eyebrows and lashes dyed and look almost like my old self again!!! Yippee!
Been slowish recovering so had some routine bloods done... Thyroid has stopped working (chemo related apparently) and also am still virtually neutropenic. Oncologist said the two are related. So started on thyroxine and will wait to pick up. Saying that I'm doing ok really. Nothing I don't expect. Apart from the one stone weight gain :-(
Hope you are all well x
Love Lilly xxx
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Hi Lillypoppy!
Glad to hear how you are doing. It does take a while to recuperate from chemo--it took me several months before I had the energy level back again. How did it feel to get your hair colored again? I bet you are looking great!
Take care.
Keep dropping in.
Mandy
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Lillypoppy,
Thanks for checking in. Yay for your new highlights and cut! I haven't gone in to color my hair yet-post chemo. I had it highlighted once-when I was about halfway through but then after that my hair got pretty thin for awhile-not from the highlighting but from the chemo. It's growing back in nicely and while it is still thinned out at the halfway point or so, the roots have several inches of growth on them-no longer just roots really!
I dealt with neutropenia for 3 months or so after chemo--my doctor said it was normal because my bone marrow was hit so hard with the chemo. I'm gradually feeling better though. I was still very tired-abnormally so-until probably the last month. Yes, it took that long. I'm dealing with a similar weight-gain like you mention. How do you get rid of it? I'm trying to eat even healthier and I exercised all the way through treatment.
Glad you're doing well!
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Yea Lilly....so glad to hear that you're finally getting back to yourself again. It takes time. Your body has been through a major whammy! Hang in there and keep improving and keep us updated.
I hope the rest of you gals are enjoying the remaining days of summer! :-)
Hugs,
Rita
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Just popping in to say HI and bumping up our thread so it is easier for new CMF gals to find! Hope all is going well for everyone. I can't believe that summer is about over. I have really enjoyed summer this year and hate to see it end. Hugs to all of you!
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hi Macy, Mandy and Ritajean.
Improving still but still neutropenic and had throat infection this week. Thanks Macy for reassuring me that you too had this problem with neutropenia.
Argh... The weight gain! I just keep hoping that returning to my normal active lifestyle and eating healthy will see me drop back to normality. I'll keep hoping!
Sending hugs to you all x
Lilly xx
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Lilly, it is hard to lose weight while you are on Arimidex. I shed the extra pounds after I finished it, though. Hugs to you as you work through these remaining side effects. Hang in there and keep in touch!
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Hi Gals! I hope that everyone is doing well. My many activities are winding down as summer comes to a halt and autumn arrives. That gives me more computer time.
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Hi, ladies! I posted today I think in another forum, I am not sure. I see this is a thread specifically for CMF chemo. I was diagnosed on May of this year with Stage 2 Invasive Ductal Carcinoma plus DCIS. I had surgery (lumpectomy) in June and started chemo in August. The SE were pretty tolerable, basically the most pronounced was fatigue two days after first treatment. I was very, very tired and spent two days laying in bed. Some constipation but nothing drastic. No nausea (they put some medication in the infusion plus gave me pills to take for that same day and the following day. They worked.) My main concern is my hair at this point. I see it is falling like crazy and I am afraid I will loose it all. I don't want to look like a shallow person, but I feel I can't cope with my diagnosis and hair loss at the same time. Can you please, ladies, who went through CMF tell me how did you fare regarding hair loss?
Thanks!
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Hi Glassowater!
This is the main CMF site and the gals here really helped me get through my treatments. I think you'll find that we still are a friendly group. You don't mention how you are getting your CMF--there are many ways to do the treatment. I can answer about hair loss on the treatment I had which was one IV infusion of CMF every 3 weeks for 8 times. After my 4th tx, I lost a lot of hair and I was sure this was it---I had scalp tingling and even my onc was not sure what was happening. In the end, the hair loss stopped and although I had hair thinning, I never needed a scarf or hat to cover my hair. I don't think you are vain to worry about hair loss…it is a lot to deal with in addition to a cancer diagnosis.
If you look there is a thread about the penguin cold cap which is offered in the UK to prevent hair loss, but which we gals in the US have to do on our own (I did not use one because by the time I found out about them, it was clear i did not need it).
Take care and feel free to drop in and ask questions as often as you need.
Sending you a big hug,
Mandy
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Thank you, Mandy! I am doing the same type of CMF you did: IV infusion, 8 treatments. I will ask about cold caps this week, but I would say they don't offer them since they never mentioned them. Your experience is very interesting since I can see that my hair loss may just be temporary and will stop at some point.
Alex
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glassofwater!
Hi again. I don't think most places in the US offer the polar cold caps…are you in the US? If so there is a thread on this bc.org which will inform you about them. Cold Cap thread on bc.org I hope that this helps you find the thread on this forum. If not, then google "penguin cold caps" and you will likely find the information you want.
After my 4th tx, there was so much hair in my shower drain that I literally thought there was a mouse there. …complete with my shriek when i saw it….but it was just me shedding. And in the end I was ok. Remember that we shed a lot of hair in the natural cause of things but when you are on chemo every hair counts.
Take care.
Hugs.
Mandy
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Hi glassofwater, Welcome even though I'm sorry you have to be here.
Your side-effects sound quite similar to mine and I'm glad you're tolerating the treatment fairly well. I had 8 tx's of CMF 3 weeks apart October 2013 - early March 2014. My hair thinning occurred much like yours (and Mandy's) did so it must be pretty common to have it happen about halfway through. Mine shed heavily for about 6 weeks at that time, slowed somewhat and then shed not as heavily but constantly until about 6 weeks after chemo had finished for good.
I completely understand how you feel about losing your hair. At one point I remember sobbing day after day because so much was falling out. I would have lots of strands in my comb and would freak out.
I will say this though--I never lost enough to where it is noticeable and I think I lost close to 50% of my hair. I am six months out from chemo now and my hair is so thick for the first few inches from the roots that it feels like it used to. I totally appreciate my hair in a whole different way.
I never looked seriouslyat those cold caps (because I wasn't going to lose my hair on CMF) but I read up just a bit on them when I was making my treatment decisions. My understanding is that you have to use them from the very first treatment and then you have to use them carefully and consistently for every treatment. Check out the thread though and I'm sure those wonderful ladies will be able to help you.
Please let us know what else we can help you with during the CMF treatment journey!
You've got this...you're halfway through!
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Hi Glass of water...I am one year out of cmf chemo. I too thought my hair was falling out. But I really did not lose a lot of hair. Only my hairdresser and I could tell for sure. I bought some hair scarfs but really did not need them. But I have a lot of long curly hair. I was careful not to put it in a ponytail or overbrush it. I was very gentle with it during the treatment. You can ask me anything about cmf. I had 8 treatments, everyother week in my port. I didn't handle the treatment well the first week. I didn't understand how to take the nausea medicine. Take it! Take it before you feel nauseous!!! I was diagnosed in dec. 2012, if you go back in this thread you can read my journey. Softness, rita, mandy, traii, all were lifesavers for me. We are here if you need us!Good luck! I know it feels like this is all consuming and everything, but it will be over before you know it and you can go back to your real life!! xo
Robin
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Hi Glass of water and welcome to the CMF thread.
I think all of us shared your fear of losing our hair. I lost quite a bit of my hair, too, when I was about half way though but nobody except me and my hairdresser really knew....and I even colored my hair during the chemo! When we first see the wads of hair fall, we tend to get pretty scared, but I have only heard of just a few gals who lost enough that they felt they needed a wig. Think positive here. You are beginning to notice the extra shedding at just the right (or expected) time in your treatment sequence. You are on the downward stretch now and I think you're doing just fine. You will continue to shed for the remaining treatments but I sincerely think that you won't lose enough to even be noticeable! I bought and used the Nioxin shampoo and scalp treatment products to use durinig the chemo journey and I think they helped some, too. They are a little cashy but I think they kept my hair in better shape.
Come back and visit us often and let us know how the remaining treatments go for you!
Hugs!
Rita
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Happy Thursday to everyone! I'm off to play a round of golf this afternoon. There's not a lot of golfing days left in Illinois for this season so I don't want to give up any of them! Hope everyone is doing well.
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Enjoy your golf game Ritajean! And wishing everyone else a great weekend!
Mandy
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Hi ladies!
I start CMF on 10/17. I will have 8 treatments three weeks apart. What should I expect? Any advice? How long is the infusion time? Waiting on my appointment to have the port placed.
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Hi ml!
Welcome to the club that no one wants to join. I think that you will find CMF is quite doable. I had the same tx as you, and managed to take a great trip to Europe 2 months after it was over. I write that to let you know that you can do this. I will be back later with lots of advice of things you may want to do during treatment, but mostly I just wanted to welcome you to the CMF thread. The other ladies will chime in and give advice and answer any questions that you have.
Hugs,
Mandy
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Hi, Just joining this group, but have gotten so much helpful info from this site. Just finished 1st cycle of CMF, and it was not as bad as I was expecting. Have had some stomach pains from the cytoxan, and dealing with the constipation, but other than that, no problems. Treatment is oral cytoxan for 14 days and MF infusion on day 1 and 8, then 2 wks off-(for 6 mos) this was my choice, since I did the research and did not like the long term SE from the TC I was offered. As everyone else, my big concern is hair loss. Being in front of the public in my job, is a big concern, but I am hoping for just thinning as many of you have had. I got the wig, but am really hoping not to use it. Any info that anyone can give will be most appreciated! Thanks
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Hi Maryland!
I had my first infusion of CMF the past Friday. It was better than I anticipated. I have been dealing with on and off nausea, but it is controlled with medication. I am really tired, but I expected that. I haven't had any side effects from the Neulasta shot. Maybe it is because I took Claritin starting on Thursday and will continue through Wednesday.
I will be on CMF every 3 weeks for 8 treatments.
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Mandy,
So, you're doing IV CMF-Glad it went well for you! My nausea has not been bad, are you experiencing any stomach issues, cramps, bloating etc? That has been the worst for me. Have not been any more tired than usual, and do not get the Neulasta shot. I have read that works wonders for the bone pain! Did you have the onco test? What are you hearing about hair loss?
Diane
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Welcome Maryland2014 to BCO as an active member. We have many lurkers (readers not yet joined) as many people just need the information, but don't join for a range of reasons. That’s fine, as we are still providing an educational resource for them, and that is one of BCOs primary focuses.
You will be able to obtain valuable feedback on
your own concerns now you are a member of the community. You will find
excellent responses to questions and sisters with similar problems and
interests that you can chat with in the safety of this forum.You may find info on hair retention in the following Topics related to chemo Hair Hair Hair - Another question & Cold Cap Users Past and Present, to Save Hair
All the best,
The Mods
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Hi Maryland!
I did my CMF some 6 years ago--hard to believe it is that long ago. You will find this to be a very supportive board. I don't think you need to go to the Hair Hair Link above. Most CMFers DO NOT lose most of their hair. While I went and tried on wigs and had one ready if I needed it, I never lost enough hair to even need a scarf to cover it. I even had two or three haircuts during treatments. I used some special shampoos recommended by Ritajean who will probably pop on and let you know what they are. And I only washed about every 3rd day instead of every day as I usually did. But though my hair thinned, it was never obvious to anyone.
I never needed a neulasta show so did not have them. I had lots of other side effects..swollen feet, dry eye, wet eye....you name them, I had them. But guess what, I managed and you will too!!!
I wonder if some of your stomach bloating might be because of steroids they use as anti nausea drugs. You might see if you onc has any suggestions for that.
Anyway you will find this group to be very supportive and the oldtimers like me will pop in to give you support. This is doable and you'll be able to do it.
And Mandy glad that you did so well with your first treatment.
Hugs to all,
Mandy1313
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I did CMF chemo in 2000 and found it very tolerable. Now 14 years later I have a new cancer, not a recurrence, but my oncologist says she no longer does CMF. She says she sees better results with the taxanes. She recommended four treatments of cytoxan and taxotere. I know you ladies are using CMF, even GMA host Amy Robeck did CMF. I'd be more apt to do chemo if I could do the one that I know I can tolerate and that is less toxic than taxotere. I have an apt with another oncologist on Tuesday for a second opinion.
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Hey Lesliienva!
I hope that you are able to find an onc who is able to think "out of the box" and to work with you in making a chemo decision that is right for you. And for your second opinion, if you have not already done so, you might want to meet with an onc at a different cancer center. The two centers that I consulted at were so far apart in my treatment options that you would have thought I had a different disease. When I came back to my primary center, they were surprised by what I'd learned elsewhere (including about CMF).
Hugs,
Mandy1313
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Mandy 1313, Not getting steroids, told my onc I did not want them! Getting iv zofran instead, it' s been ok. Did you do oral cytoxan or infusion? Stomach issues, much better today, seems to happen 2-3 days after infusion. My onc also said he does not do Neulasta for CMF, he wanted to do TC, but I told them I did not want Neulasta or steroids, which is why I went with this treatment. You ladies have given me much info, which I was so grateful for, at a time when I did not know which way to turn. Thank you all!
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Would like to connect with someone who has done CMF with oral cytoxan. My Johns Hopkins onc will only use this version, since it is the original Italian protocol, and the one that all the CMF research is done on. Trying to find out what your treatment was like. Thanks
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Hi Maryland2014, a fellow survivor mentioned your question to me via a Facebook post. Feeling fortunate that with time it's been quite some time since logging into bc.org (which was a life saver in a multitudes of ways) back in '07.
I also did CMF with oral Cytoxin for 15 days and an infusion of "M" and "F" on days 1 and 8 for six months. I faithfully took a Zofran each morning of those 15 days. Was not going to give nausea a chance. I found that a small dose of Miralax also became my friend as constipation was appararently going to be a side effect I was not going to enjoy.
Hair loss ... After the second infusion of 12 schedule I thought "ah shucks" I am going to lose my hair. I saw my hairdresser, got my hair cut even shorter than usual and then within the next couple weeks noticed it was just thinning but I indeed never lost enough to wish I had a head cover or wig.
No issue with mouth sores, strange taste. White blood count became low towards the last month or so, had to postpone one infusion, but never had to have a Nuelasta shot.
Side note ... I stayed very active (worked except after re cooperation from surgeries) throughout treatment which included a mastectomy, separate node dissection surgery, chemo and 6 weeks radiation. Walked my buns off and was even able to walk the Komen 3 Day that year. Took one day at a time, did listen to my body and tried to get to bed early each evening. Side note ... I was prescribed a very small dose of Lorazepam (anxiety med) which helped as well to settle (or mellow) my mind that occasionally didn't want to slow down at bedtime. I know the thought of one med on top of another doesn't sound appealing to some but we also have to do what might work well for this particular period in time.
Remember that life WILL go on and you very well will be someone like me trying to remember "exactly what we're the issue when I was in treatment"?
Rita (whom I see is faithfully still giving wonderful words of support) is a wonderful source of advice. She will not sugarcoat the issues and also is so very caring.
May your journey be your own (yet uneventful) and most healing.
You got this gal !!!
Carol
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CAROL,
THANK YOU so much for your encouraging words. Most of the ladies on the blog seemed to be doing IV treatment and not oral. SO glad about the news about not losing your hair! I work in a Drs. office and have for 25 years. The thought of my patients knowing I was in treatment was killing me. My co-workers know, but it's not something I want to share with patients.
I have not been any more tired than usual, and have gone to work everyday since starting, although some days I go in later and some days leave earlier. Finding 1/2 a zofran works for me, the whole pill was giving me a terrible headache. Also, olive oil is working for constipation.( maybe you can tell, I don't LIKE meds!). Have a sore spot in the roof of my mouth, but not sure it is from the chemo.
I also have xanax for sleep, which I have problems with anyway, and try NOT to take it on a regular basis. Nurse practitioner said " get through this, we'll worry about after effects later"
I know I can do this, it was my choice. They wanted me to do TC, but after researching it, decided I did not like the SE that went with it. Found that CMF was better tolerated with less long term SE.
Trying to keep life as normal as possible, for the sake of my family as well as myself. They have been very supportive, as well as all the people I work with. It really helps. I went to work every day for weeks and refused to talk about it, they let me have my space. Some people know it all, others just the outline, but that is what is working for me.
Thank you again for your feedback, it was most kind of you to respond to my plea.
God Bless You, Diane
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