CMF Question
Comments
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Hi ladies, well, I finished my 8th and final chemo on March 5th! woowee! It doesn't seem that long ago that I was here looking for help and advice for the first time so for anyone reading here who is considering or just starting CMF, you will get through this. I was very scared of chemo. This thread was a great help.
I'm very fatigued right now but I have had a whirlwind of going through my consultation appointments for rads this week. My medical team was right on top of it and got me referred immediately. So, I'm in the transition stage in my treatment.
I have a few lingering side effects but I look forward to those diminishing as the weeks go on. The good news for anyone reading who is getting ready to begin...the side effects generally aren't that bad. Please don't be scared of them. Of course, everyone is different and will respond differently, but most ladies here got through CMF with less severe side effects.
I've lost about 50% of my hair; it's pretty thin and it is still shedding. I don't expect that to stop for a little while longer. My skin has also gotten very dry. I'm sure some of it is this long winter we've had where I live but I know some of it is from the chemo. My nails are also very brittle and break easily. I've also had some lingering stomach/digestive issues but when I read what the women go through on AC or Taxol treatments, what I have experienced on CMF (as have most others here) is definitely more manageable.
I worked part-time at my full-time job, worked out 3 days a week, went snowboarding several times and tried to live my life as regularly as possible. It all went fast but slow at the same time.
Thank you all for your support! I will continue to check in.
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Hi,
I have been reading the posts and it has answered some of questions on Chemo. I found out that I had BC a week before Christmas. My husband and I waited to tell the family until after the holidays. I had surgery on 1/7/2014 and they did a Lump and Lymph Node dissection on 2. The lymph came back negative and the tumor was stage 2, grade 3, 3.2 cm Medullary. They asked if I had BC in the family. I had none. The Surgeon advised I do a BRCA1 & 2 test. I did the test for my girls. The test was negative. I was so relieved. I went to the MO the following week and talked about which treatment was best for me. I have diabetes and some of the treatments was harsh for neuropathy in hands & feet and the heart. The MO felt CMF was the best treatment. I was suppose to start treatment the following month but I got a call from Surgeon that the MO & RO felt the margin where the tumor was taken out was not clear enough so 2/14/2014 I had my second surgery and the port put in.
It has been over 4 weeks and I had my appointment with MO on Friday. We start 1st TX on 3/21. I think reality hit when they showed me around the facility and the infusion room. I am scared about the unknown. Will I have a bad reaction to the meds. Willl I be able to continue to work during this. I have 6 cycles and 6 weeks of rads. It is going to be a long spring & summer.
Dana
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Hi Dana
I'm sure one of the more experienced CMF ladies will be along and give you great advice as they did me. I am just over half way in my infusions 7/12. I feel your fear as I was the same when I started but I echo what others here told me - the fear of the unknown is probably worse than the infusion. What you're feeling right now is totally normal. You will settle into the regime and I can say psychologically it becomes much easier once you've had your first one or two. Are you having 3 weekly infusions?
As for your question of working I think it is really individual to your circumstances - for example what job you do, other health issues, your age, support at home etc and how you individually react to the chemotherapy. I am inspired by some of the ladies here who have continued working.
For me personally I usually work as a nurse in a hospital and I would not have been able to maintain my full time job even if I'd been allowed. Working in a hospital surrounded by bugs and illness was not something that was advised. I also on a personal level did not want to not have the stress of work and allow myself time to recover from all the surgery and chemo and spend time with my family - however I can appreciate I am lucky enough to have that luxury of the decision. My chemo's have been day 1 then again a week later and although the effects of CMF are milder than the other chemo's I personally could not have worked a week after each chemo. I am in total awe of the others who have. That said I have been able to continue with normal life once I'm over the effects and have made sure I plan positive things to do with friends and family and the 10 days or so before the next infusion is due I usually am back to normal. You can do this Dana. I with the help of some of the ladies here adjusted some of the meds that come along with chemo and it made it all so much more doable.
Good news re you BRCA tests. I was 41 at diagnosis and am just going through the genetic route right now. It takes a little longer in UK. I'm pleased for you and your girls.
I know what you mean about long spring and summer. I started my chemo in December and a May finish seemed an eternity and psychologically it brought me down so I took the advice of the ladies here and just focused on the one I was having. It does help. Try to plan nice things if you can - it helps - I can't believe the time has gone so quickly and it honestly hadn't been that bad.
Well Dana - sorry for my long ramblings - I thought I'd chip in and say hi - but I'm sure the other ladies will have lots of advice for you. I have really found them helpful.
Love Lilly. X
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Hi Dana!
Welcome to the club no one wants to join. But you will get alot of support from the ladies on this thread--I'd never have made it through CMF without this group. That's why I still come back to give my thoughts even after so many years. Like you, I was BRCA negative -- so at least my daughters did not have to worry about the gene. If you have any questions, come back and ask. Someone will surely have a suggestion.
Hugs
Mandy
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Oh Dana, welcome to the CMF thread. There are so many wonderful ladies on this thread who will help you through your treatments....one step at a time. Your diagnosis sounds so much like mine! I had the two surgeries also due to unclear margins, the 6 CMF infusion treatments spaced three weeks apart and the radiation.
How well we all understand your fear of the unknown! I worried so much that I actually made myself sick before I ever got to the chemo room on that first day. Actually the treatments themselves aren't that bad. By now you've had your first treatment and you known that you just sit in a comfortable chair while the meds drip into your body. There are so many different anti-nausea drugs that they can usually work with you to keep you from getting nausea. How did it go for you? If you had any side effects, be sure to let them know because the dosage can be tweaked to work best for you. Mouth sores can be a side effect of CMF. Most gals avoid them by sucking on ice chips while having the treatments. Most cancer facilities have them available it your ask for them. I also purchase Biotine mouth wash and toothpaste to use. You can purchase it at drugstores and most places like Wal-Mart or K-Mart.
Please come back often and let us know how you are doing. Ask anything and there will probably be somebody on here who can give you a good answer.
Hugs to you as you start your journey. You can lean on anytime!
Rita
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Just stopping by to send positive vibes. Last year this time I was in the throes or rather woes, of chemo treatment. I think the fear of chemo was worse than the actual chemo. It's no walk in the park, but considering the other chemo options, it was fair.
My knowledge of chemo was the extreme cases and what I've seen on tv with the patients. Severe weight loss, loss of all hair (in this era of weaves and wigs, that wasn't so horrible to me. I didn't want it to happen, but I was ready in case) The horrific nauseousness etc. Weakness, fatigue etc
I did experience a little of that (except weight loss) but not to the degree that I was afraid of. My hair thinned, I was able to work but just took it easy. I stayed on top of my meds to reduce the queasiness. I was tired, but I took it easy.
Good luck to the newcomers and congrats to the finishers!!!!
Ann
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Ann..so glad to see a post from you. I have thought of you often. Isn't it good to put all that behind you? Hugs to you as you move right on with your life!
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ritajean,
You have been constantly supportive to all of us who come here❤️ You are truly a gem and I thank you!!! I love how you always keep coming back to check in and offer words of wisdom, provide tips and suggestions to help us through treatment
And woohoo you're right!! It is great to have it behind me & I am cheering and rooting for the ones in the midst of this, to get closer to the finish line
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Hi Dana, and all the new CMF peeps who have joined this thread. I was diagnosed in Dec. of 2012. Had surgery (lumptectomy) CMF followed by radiation and am now on tamoxifen. The ladies here are wonderful! I have found life long friends through something that I thought was the worst time of my life. It felt endless and scary. But here I am on the other side and I never thought I would be. There are too many people to name who were so incredibly supportive but Ritajean, Mandy, Traii and my girl Softness were incredible. If you have any questions, please don't hesitate to ask. There is no question too weird. And the number one question is hair. :-) I have a big head of Italian hair and mine definitely thinned out, but only I could really tell. Maybe 35%? . I worked full time and taught Zumba classes twice a week!
You can do this!!!! You can private message me if you need to also! Good luck, we are all here for you and rooting for you! xo Robin0 -
Hi ladies
Just checking in. Getting ready for my 9th infusion next Tuesday. I'm on the home stretch - done 8 infusions - just 4 more infusions over the next 6 weeks then I am done!
I have noticed this cycle I have muscle and generalised bone pain. I just feel really fatigued. Perhaps it's the cumulative effects of chemo? Just can't seem to shake the fatigue off at the moment. I'm staying active and walking for at least 40 minutes to an hour daily as well as usual daily chores etc. Did you notice your fatigue worsening etc towards the end? I am slightly anaemic and having usual repeat blood tests Monday.
Probably lost 20- 25% of hair up to now (I cold cap during treatments too) but I'm coping and feel less stressed about it. Feel optimistic and more postive x
Love to all
Lilly x
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HI Lilllypoppy! I was on a different tx, but yes, I did get very fatigued towards the end of chemo. I literally could not walk around the block by my last week of chemo. Once chemo stopped, I got a pedometer and each day walked a bit more. Two months later I was in Europe and walking a couple of miles a day. So yes the fatigue is part of it, but you will get over the fatigue and be strong again. And I did have terrible bone pain--I would wake up during the night with pains in my shin bones that were really severe. Again, they went away too. So try to be optimistic--you're in the down hill part of the CMF trip and you are almost there!!!
Hugs to all.
Mandy
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Yes, I think everyone was fatigued as the treatments neared the end. The cumulative effect takes hold and we have to deal with the exhaustion. The best way to do that is to look to the end......which is rapidly approaching and to visualize how much better you're going to feel when they are all done and over! You're doing the right thing, Lilly by trying to stay active. That will help your fatigue level and your moods. You can do it, gal! You're about to the finish line! Hugs!
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thank you so much Mandy and Ritajean for your kind words of encouragement. It helps to know you've been there and understand.
I'm literally counting down the weeks and days now. I so crave "normality" and look forward to becoming fit and healthy again. Looking forward to spring turning to summer and putting chemo behind me.
Thank you for understanding x
Lilly x
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You're doing great, Lilly! It won't be long now! Keep us updated on how the remaining part of the journey goes!
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Ritajean was my cheerleader too! She helps you keep moving along and keeps your spirits up.
Lilly you are doing well! And do check in to let us know what's going on.
Hugs Mandy.
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Thank you RitaJean and Mandy
Had chemo 9 yesterday. All well. In fact today I have been relatively ok. Been pottering and managed an hours walk and housework. Emend really helps. Think my first day post chemo I'm normally alright (ish!) then the fatigue, bone pains and cold sweats start day 2. Fingers crossed I may get away with it this time ...... Wishful thinking :-)
Thanks for your support
Lilly xxx
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I had pain in my shin bones too from time to time and got more fatigued as treatments went on. I'm 5 weeks PFC now (can't believe I can actually say that) and feel pretty good. The fatigue is still there and I'm still shedding hair but most of the time I feel about 95% of normal. I just sleep really good at night!
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Thank you so much Macy. I'm feeling pretty rough today to be honest - bone pain, flushed and exhausted. It helps to know there's light at the end of the tunnel. My hair still shedding but dare I say it I think it has slowed down :-)
Well done for getting through your chemo part of your treatment and I sincerely hope all is going well for you.
Love Lilly x
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Hi Lilly poppy!
I know those tx towards the end are the worst. The end is so close and for me the side effects started to add up..that bone pain is a bad one! But you're almost there so try to hang in there.
Hugs form this side of the pond.
Mandy
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Hello everyone! It's been quiet on here so I decided to pop on and bump up our thread so it's easier to find. I hope the inactivity means that everyone is doing well and we're just busy! We are heading to Mississippi for Easter so I want to wish each and every one of you a wonderful Easter.
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Thanks for the bump, Rita!
I'm doing good. I'm glad chemo is over; it's been 6 weeks now! My hair is still shedding though. It's slowed down but I'm surprised that I'm still getting shedding after this long PFC. Did this happen to anyone else?
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Hi Macy and everyone!
I just wanted to check in and wish a happy Easter to those who celebrate and a wonderful weekend to all!
Hugs
Mandy
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Hi everyone! I hope everyone had a good Easter and that the gals in treatment are doing well! Hugs to all of you!
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Hi Ritajean
This cycle of infusion 9 and 10 has been so hard. I've been really unwell for since last infusion. Had infection and been on antibiotics. Was neutropenic but had neulasta. I have felt that unwell that I seriously have been considering not having the last 2 infusions. My veins are shot in my hand and last infusion was painful. My mouth and nose are ulcerated and inflamed despite all the remedies you have all kindly suggested. It's starting to improve and today I've been able to eat better.
I have started to pick up a little now. I'm still unsure what to do. I'm giving myself a few days to think about it. Now I'm starting to feel a little better I'm thinking... Just get on and have it but I'm so fed up of feeling unwell. I've never been a quitter but this is soooo hard
I'll let you know. I long to be on here saying "all done!"
Love Lilly xx
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Oh Lilly, I am so sorry to hear that you are having a hard time with the last infusions. Have you considered asking your onc if your dosage could be reduced for the last couple of infusions? They usually start most of us on the same standard dosage but often have flexibility to reduce or increase the dosage as needed for different individuals. My dosage was reduced slightly for the last two treatments and I got through them much better. Perhaps you might talk about this with your medical team and see if that is an option for you.
Since the chemo ruins our immune system, infections become so hard to fight and they wear us down. Nobody can tell you what to do about the last treatments because only you know how much your body can take. Sometimes it is hard to see the end when we are worn down and hurting. I'm sure that you will make the best decision for you. Hugs to you as you stuggle to "feel better" and decide what to do about the infusions. We will be here for you.....no matter what your decision so please keep in touch. My thoughts and prayers will be with you.
Rita
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Hi Lilly!
I am so sorry to hear how difficult your last tx has been. I'm going to make some suggestions which you should feel free to ignore. But these are things that possibly could help you.
1. Veins: I do not know how long they give you your infusion (I can never figure out what the ladies who are on the pill tx get), but it might be possible to give you your last dose via an iv in your leg--yes it can be done and it is done all the time. That way your hand veins would have a chance to rest.
2. Dose: If there a reason why your onc wants you to have a certain number of doses? Is there a study that shows this is the number or is there some other reason? I was on the 8 tx every 3 weeks cycle that is often given in the US. I had some terrible side effects and for the last two tx, I did not get cytoxen though I did get the 5FU and methotrexate. So your onc might be able to play around with the amounts of the drugs or the dose. Or you might find that your onc agrees to give you one less tx.
Can you completely rest in between your tx? And can you have a friend or someone else cook for you so you get proper nutrition? I was very lucky in that I had someone who helped me with cooking. And I had a few bland but nutritious dishes that I enjoyed while I was on chemo.
Know that we here are routing for you and hope that you will feel better. As Ritajean said, whatever you decide to do is the right decision and don't look back and second guess yourself. Keep in touch with your friends here on this board.
Many hugs,
Mandy
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Lilypoppy:
One other thing--you said your mouth and nose are very inflamed. I had acupuncture during chemo and it helped me with the mouth sores a great deal. I just spent a day with a friend who is on a very strong chemo for lung cancer, and she also has had relief from mouth sores through acupuncture. So it might be worth a try.
More hugs.
Mand
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Mandy....
Great suggestions for Lilly.
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Hi Mandy and Ritajean
Mandy I've replied to your pm. Thank you.
Thank you so much to you both for all your advice. I've not been online for a few days as not felt that well. I'm feeling much better and have completed my course of antibiotics.
I've decided to go ahead with the next chemotherapies - I've come this far and don't want too look back with regret. I'll take the last 2 one at a time and see how I go. All I am thinking is 2 weeks from now I will have had my last infusion. I am to have 75% dose of all three CMF.
Like you Mandy I often wonder why treatment regimes vary. I tried to research it and here in the UK the policy is apparently that higher risk women (I had an oncotype score of 30 and was 41 at diagnosis) that the day 1 and day 8 regime all IV for 6 cycles is recommended.
I'd like you to know that the advice and support you and Ritajean have given me has helped me to carry on. I'm not looking forward to it but think I just have to get on with it and then I won't have any regrets that I didn't do all I could to stop the cancer ever coming back. Thank you so much x
On a brighter note....... Think I still have about 70% of my hair. Can't wait for this to all be over and start looking like the old me - looking forward to highlighted hair and my skin to look healthy again! Just one last thing - how long did you find your skin burned more easily in the sun? We have had a few nice sunny days and I found I burnt very easily (which is unusual for me)
Thanks everyone. Can't wait to join the "all done" club
Lilly x
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Lilly...You can do it! Before you know it, you will be a chemo grad and your life will slowly begin to return to normal. There is a good life after chemo and it will be waiting fo your. It appears that they have reduced your formula????? If so, that is good. It will be easier for you, I think.
When is your next treatment?
We will be here to help you if needed but regardless of need, please keep us updated. Hugs to you!
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