Reactions after chemo treatments?

[chemlcali]

Looking for some support as to what was normal reaction to chemo treatment? Took me 12 days to rebound. Had horrendous pian in FEET, legs, knees, and thighs plus burning in FEET. Had to stay in bed. Chemo nurse said could not be neuropathy. Said it was anxiety. This was my first of six facile/carbo treatments. I am stage three and very scared. Will i ever get my life back.

[Hidden]

Hi, speaking for Sandra who started her journey in 2009 also stage 3c. It was a frigthening time and also suffered pains and aches in her limbs and joints but they eased off after first couple of weeks. Also spent several days bed bound but by the time the next cycle was due she was back on her feet and ready to take the next cycle. She actually did 5 before her surgery was performed. She is now 4 years on and still fighting. I am sure you will get through this, Sandra is fortunate that I can give her 24/7 care without worrying about work and leaving her alone for long periods. Keep strong and you will get through this with perhaps some long periods of remission at the end of treatment. You will get plenty of support on this site. Love Paul xx

[Hidden]

Of course all those symptoms could be chemo related ('neuropathy' means nerve related pain; so they cannot say they are not). However, in addition, don't forget you are probably experiencing a surgery-induced menopause, which will be exacerbated by chemo. Have a read about menopause, and take into consideration that yours is likely to be an extreme one.

I see that they were confident they'd got your cancer completely, so your chemo is a 'mop up' job. I had the same situation, but my ov. ca. was stage 3c and aggressive. Yes; if you are like me, you will get your life back, and you will relax about it and feel confident again, but it might take a long time to recover from chemo and menopause. I'm 4 years into full remission, and would say it took 2 for me to regain good health and equilibrium MOST of the time.

Best wishes,

Isadora.

[angelina]

Hi, I had the most awful pains as you have experienced, I couldn't bare to put my

feet on the ground it was so painfull. It lasted about a week and sorry to say I had

it every time after chemo. My oncologist prescribed gabapentin and ibuprofen and

it did ease the discomfort a little. She said it was neuropathy which isadora has

mentioned.

The only thing I could do at the time was rest as much as I could and the first couple

of days after chemo I felt like I was on another planet with the pain.

Take care

Angie xx

[chemlcali]

Thanks for your words of encouragement. I went thru menopause years ago. I am also so shakey. I had good day yesterday. And today i feel so awful. Maybe i expect too much. My husband is not a good caregiver ANDQ resents me being sick. He is older and mostly ignores me. Sorry. Guess i am having a pity party today which is not my usual style. I am angry at myself too. UGH!

[Moyraelan in reply to chemlcali]

If you are experiencing pains that you never had before the chemo then it must be chemo related. The medics are reluctant to admit that chemo causes these symptoms and are quick to tell us that it s not from the chemo. I also found the nebulas ya injections given 24 hrs after carbo/ taxol to be very severe and induces flu like symptoms ( pains in the bones etc)

Carmel

[Hidden]

I think this is quite normal to have these pains but I don't think the medical profession like to admit it (in case it discourages you from taking it) having had chemo twice, I can assure you I have experienced this on both lines of treatment best wishes love x G x

[Cadbury]

Yes, this is a reaction to the chemotherapy drugs and the pain can feel overwhelming. I remember my Oncologist talking to me as though she had never heard of this reaction, when more recognition of such pain is needed. Gwyn is right in that these problems are played down, otherwise patients would not agree to what is in fact a voluntary poisoning, so it is no wonder that the body screams out in protest. The only good thing about all this is that you are given the clear signal that the chemotherapy is working!

For 3 days post chemotherapy, you will have steroids and anti-sickness tablets to support you through the immediate phase. The trouble really starts when the steroids stop and the reality of the situation is unmasked. The steroids are given in high doses so the body has to acclimatise quickly when they are stopped. This can result in shakiness, sweating and feeling faint.

Chemotherapy attacks the bone marrow and the pain going down the legs often feels like a searing pain. Again, the body is reacting to an invasion of strong chemicals. The attack on the bone marrow is why we all become anaemic and eventually quite breathless on walking.

You need to get yourself organised with painkillers. Ibuprofen or Voltarol can help a great deal and it is important to start taking these drugs just BEFORE the steroids stop so that you have the painkillers on board in readiness to deal with the on-coming pain.

The first dose of chemotherapy is sometimes the worst. This may not be a repeating pattern.

Many of us on this site have faced what you are going through now. I have no idea how we all cope but we do and you too will find that you are stronger than you imagine. The day will come when the chemotherapy course is finished so there is light at the end of the tunnel. You may find that your Clinical Nurse Specialist is more helpful than the chemo nurse.

There is plenty of help and empathy on this site as we have all travelled similar journeys. Please do ask if you need help and support.

Best wishes

Isabelle

[chemlcali]

THANK YOU SO MUCH TO ALL OF YOU FOR YOUR KIND, HONEST ANDQ EMPATHETIC RESPONSES. KNOWING I AM NOT ALONE AND THAT THE PAIN LA NOT JUST ANXIETY HELPS. IT AND NOW BEEN THIRTEEN DAYS SINCE MY FIRST TREATMENT AND I AM DREADING NUMBER TWO MOSTLY BECAUSE NO MEDICAL PERSONNEL REALLY HELPED ME BE PREPARED FOR WHAT MIGHT TRULY HAPPEN. I THINK I HAD MORE ANGST FROM THEM JUST DISMISSING ME. I CAN FIND A WAY TO DEAL IF I KNOW WHAT COULD HAPPEN. AGAIN, THANK YOU ALL FOR BEING HERE FOR ME.

HUGS AND GRATITUDE,

JANE

[MargaretJ]

Your symptoms sound very like mine! I have had two lots of chemo and they will not give me taxol any more because of the neuropathy and I cannot have carbo platin because on the second cycle of my last round of chemo It sent me into anaphylactic shock. I have had two lots of surgery and I think I am about to be told the OC is back. I have, however got my life back, I live alone so do not have to worry about anyone else. It was my birthday yesterday, my third since diagnosis and start of treatment, and today about 30 friends are coming to celebrate with Pimms and canapés. I find that it is best to "go with the flow" hot water bottle and heat patches during the day to ease the pains, a folding s tick for balance when walking, a disabled parking badge fo keep the distance walked to a minimum (funnily enough I find cycling easier) paracetemol & ibuprofen for the pain and a bolshie attitude to help me to cope with life in general. Mind you I am one of life's control freaks.

My last surgery left me with a colostomy and I have learned to irrigate so I have control over that as far as I can. Nil desperandum and two fingers to the disease.

Your husband is probably frightened by your condition. As I live alone I do not have that worry. I divorced my adulterous husband of 33 years in 1998!

We have all been there and we all cope in our own way. Personally I do not want "care'" I want help to stay independent so I get attendance allowance and pay a friend to come in and do the things I cannot. Who would have thought that changing the bed and pushing a vacuum cleaner would become major obstacles.

My paring permit and attendance allowance were arranged for me by my community Macmillan Nurse and any medical problems I take to my specialist nurse or my GP who is also fantastic.

This is a really bad time for you but it will get better, I was lucky as I was well through the menopause so did not have the added burden of a surgical/chemically induced one but I do still get symptoms, especially since the lumpectomy in Jan this year as a result of which I take Letrozole to inhibit oestrogen production.

We are all rooting for you!

Love!

Margaret

[googoosh]

yes its the chemo.

the pain I felt in my feet whst I was l having chemo was like my bones were being crushed. it does go after the chemo stops, but two years on I still experience that same pain in my elbows every so often. no one tells you just how bad it is.

I would have signed the papers anyway, but I had no idea of the impact. Walking was essential in my recovery and strongly suggest you walk every day no matter how bad things get. some days I could only manage from the front door to the road, but I did it.

I would be interested in knowing if any one else experiences chemo attacks? two years on and they still come. Less than before, but more intense.

[Suzy]

I am horrified that some medical professionals are still not telling the truth about neuropathy. It is insidious and dangerous to tell patients suffering these real side effects that it is a figment of their imagination. We should campaign for openness and honesty on this issue. There is plenty of information out there. Nurses need to get more up to date information. They could start by reading theASCO recommendations about giving much more consideration to relieving neuropathy side effects.

[Whippit]

Dear Jane

I'm really sorry you've got so much pain and worse still if you don't feel you're getting the support you should at home. Your husband sounds very unsympathetic and I can't imagine how difficult that makes things for you.

I think you've had a lot of good advice here and I can't add more. You should explain just how bad the pain has been to the medical team in case they can recommend some additional pain-relief or lower the dose of Taxol.

I wholeheartedly concur with Suzy with regard to telling the truth. Sometimes what they tell you is the 'official line' to keep patients in the dark. I think this might happen because of pressure from the senior management rather than a wish to be economical with the truth.

I really hope the symptoms are easing now. Please don't be frightened for the next session. It may be it's a reaction to just the first session and the ones to follow won't be so bad. At the end of the day the professionals have absolutely no idea why some of us react one way or another to chemotherapy. It's a shot in the dark.

Sending loads of love and sympathy. Wish you were nearer as I'd come round and make you a cup of tea. xxxx

Love Annie

[susu]

Hi, it's normal I had a bad time but was worth it as it didnt come back for five years, feet unbearable try walking in bare feet on tiled floor I was even going outside to put my feet on cold concrete and it helped hope it helps you. The chemo is working remember it has to go to every part of your body to kills them cancer cells, as hard as it may sound try to embrace it, god bless and keep you safe throughout your journey x

[chemlcali]

GOOD MORNING, YOUR BRAVERY AND HONESTY ARE SO HELPFUL. YOUR KINDNESS WARMS MY HEART. I APPRECIATE YOU SHARING. COPING SKILLS ARE DIFFERENT FOR ALL. I LOVE THAT YOU EACH HAVE FOUND WAYS TO COPE. YOU GIVE ME THE COURAGE TO DO THIS. MY STEPSON CAME YESTERDAY. HE GIVES STRENGTH, LOVE AND NORMALCY. HE LISTENED TO ME, CRIED WITH ME AND THEN . . . AS WE HAVE DONE IN THE PAST PREPARED A MEAL TOGETHER. WE PICKED A MENU, HE SHOPPED AND WE DID IT TOGETHER. THAT LA THE MOST NORMAL I HAVE BEEN ABLE TO DO IN ALMOST TWO MONTHS. I WOULD STAND AND DO WHAT I COULD AND THEN SIT. HE COULD FINISH WHAT I COULD NOT. WE.THEN.SET THE TABLE AND SHARED THE MEALQ. EVEN THE GRUMPY HUSBAND WENT ALONG. NE DID THE DISHES AND CLEANED MY KITCHEN JUST HOW I LIKE.IT. BRIGHT AND SHINY. WHEN IT WAS ALL DONE WITH TUMMY FULL WE ALL WATCHED A MOVIE TOGETHER. WHAT TO SOME MIGHT SEEM SO SIMPLE, FELT SO GOOD TO ME. I MISS THOSE SIMPLE DAILY THINGS I CANNOT DO. I USED TO LOVE TO HAVE FRIENDS OVER AND EVEN JUST ENJOY A CUP OF TEA. TODAY I AM TIRED BUT THAT DID MORE FOR MY MORALE THAN ALMOST ANYTHING. I MISS GROCERY SHOPPING, RUNNING ERRANDS ETC. NEVER THOUGHT THOSE SMALL THINGS COULD BE SO IMPORTANT.

I HAVE AN APPOINTMENT WITH MY ACTUAL CHEMO DOCTOR ON FRIDAY PRIOR TO MY NEXT TREATMENT. I PLAN TO STAND UP TO HIM AND LET HIM KNOW HOW I FEEL AND THE LACK OF SUPPORT AND HONESTY HAS NOT BEEN OKAY. I AM TOUGH AND I WILL NOT TOLERATE HOW I HAVE BEEN TREATED. ALL OF YOUR SHARING HAS GIVEN ME REAL INFORMATION I CAN SHARE AND USE. AND I WILL.

I DID CALL.THE CHEMO PHARMACIST ON DAY TWO AS MY FACE FELT FUNNY AND WAS SWOLLEN AND IT FELT LIKE AN ALLERGIC REACTION. EVEN HE WAS NOT SURE. I ASKED OF I SHOULD TAKE AN ANTIHISTAMINES AND HE SAID I COULD BUT DID NOTQ THINK IT WAS A REACTION. WELL, IMAGINE ONCE I TOOK THE ANTIHISTAMINES, THE SYMPTOMS RESOLVED. I THINK THE DOCTORS LEAVE US TO DEAL TOO MUCH OF THIS ON OUR OWN. I DO NOT THINK THEY WATCH US CLOSELY ENOUGH AFTER GIVING US THESE STRONG DRUGS. I BET MOST OF THEM HAVE NEVER TAKEN TREATMENT.

AGAIN, THANK YOU ALL SO MUCH. TODAY, I FEEL MY RESOLVE RETURNING.

JANE. XXXX

[Lizneild in reply to chemlcali]

Hi Jane,

Same story here. Appalling pain. I lay awake all night counting the hours and repeating the same nursery rhyme in my head for distraction. I went through all the ibuprophen rigmarole and ended up with oral codien. And like you I had to fight to be heard. It was not a symptom that seemed to interest anyone but me. However I did get through it with the help of my kind loving children. Your description of your stepson's love reminded me again that even the worst things have an upside. I never knew before how perfectly my children knew and loved me

I am now 18 months into remission and my life is changed forever. And yes I still get scared but every sunrise is a joy. I do less of what I should and more of what I want.

I hug the perfect little bodies of my grandchildren and overflow with gratitude for their being. Today one of my girls asked me to go camping. I gave up camping years ago.... so what did I say? "Brilliant. When?"

It's a hurdle race. We are with you.

Liz

[zuzana]

Hello, im stage 3 too and after each chemo i had terrible joint and muscle ache on whole body even smallest hand bones. I started to swim and that did help a bit. I didnt have hair so got swim hat for me. Im 18 months post last chemo and if i walk too much or have a heals i do experience some aches even now. Also due to no HRT replacement my body missing vitamin D and calcium so that doesn't help either but on the case with vitamins.

My life is very much to normal, back at work,going out for meals with some glass of wine too ( i can not stop to live), travel a lot and so on! I must say i do Appreciate my life so much more and do more than ever before! Not nice illness to get but without it i wouldn't change my living and opinion about our life's. i did accepted it, MRS C. Is welcome to live with me but pease just leave me alone ;)

Wishing u good luck xxx

[Aurelie]

Hello Jane - sorry you've been in so much pain and hope this first treatment proves to be the exception rather than the rule.

Your stepson sounds a delightful young man and maybe your husband will take a leaf out of his book and be more supportive in future - his attitude towards you certainly leaves a lot to be desired.

Very best of luck for Friday, when you see your oncologist again - keep strong.

Jill x

[chemlcali]

AS EVENING COMES IN MY PART OF THE WORLD, I AM GRATEFUL FOR EACH OF YOUR POSTS. THIS HAS BEEN A GOOD DAY AND I AM HOPEFUL TOMORROW WILL BE EVEN BETTER. THANK YOU ALL FOR REACHING OUT TO ME. I NO LONGER FEEL SO ALONE. BLESS ALL.OF YOU.

JANE XXX

[Hidden]

Just to add another support message -- sorry you are having such a rough time

Love

Sue xxx