Side Affects AFTER CHEMO

You don't hear much about what happens to our bodies AFTER Chemo. If anyone knows anything about this let me know. I had problems with Arimidex, causing "Neuropathy type symptoms". All the joint pain I got from using Arimidex, never left.
Also I now have "Connective Tissue disease" an autoimmune disorder. Which causes pain in most/all my joints and fatigue.
Also, I was "dropped into menopause"...
I'm 45, its been just over a year since I finished Chemo(4 double AC's) 26 weeks and Radition, 30 treatments.
I'm having a hard time dealing with this disease twice, no-less menopause, fatigue and joint problems, and I'm still trying to get the weight off after all the steroids. Thought it would be a chemo diet....thought I'de lose 20 pounds...no I gained about 30! And I'm tired and achy...Anyone else?

Any one else relate to this

i am tired all the time, lets talk

gerri wrote:

i am tired all the time, lets talk

Sorry it took so long to come back...kept forgetting how I got here...for real.
Im 45, feel like 60, two time survivor 1998, 2005,two years since lumpectomy 2/5, last treatment 11/1/05, arimidex, tamoxifen,= nightmare since!
somehow I replied to another board and got lots of replies...none here. chemo brain, possible stroke 9/06, neuropathy 5/06, tetanus shot reaction (wrong one) connective tissue disease, auto immune disorder, now they're seeing "sjogrens syndrome, dry mouth/low salivary function, dry eyes, I had to have tubes put in my eyes during chemo - "chronic" tearing" got teased how I was supposedly in the 5% group for side effects - I had em all, thrush, joint, sleepy, never really threw up but two times.
cHEMO-BRAIN BIG-TIME, Neuropathy. Here's the big one.....I know it sounds crazy...trust me I wish I had never heard it. Brain Spect from a suspected Mini-stroke, showed depression(basically compression/deterioration) in 3 parts of my brain indicating signs of early onset of Alzheimers and demetia. I told everyone I hope I forgetALL THIS./ DOCTOR ORDERS A PET SCAN TO CONFIRM... iNSURANCE DENIED LAST WEEK....i CALLED THE DOCTOR...he's head of Neurology at our HIgh Hospital, he said my hand are tied....after he wrote me a script for the test that said brain metastesis, he should of gave me a scipt for a sedative!

Dear Denise,

I hope you are doing OK. It sounds like you have been through hell and back. I also went under treatment for Stage 3 BC in Feb. 05, and I am still having chemo brain. My joints hurt SO BAD after stopping all of the chemo and radiation. It finally started going away, and the chemo brain is not so bad.
I'm sorry about the dementia/Alzheimers. My father had that, and my mother has ovarian cancer. Is there anything that anyone is doing for you? I hope you have a caretaker. You are so young.

I have one question: do you think you got the alzheimer's diagnosis because of the chemo? Or would you have gotten it anyway? Did they say?
Did you have a stroke because of the chemo? I keep having chest pains, and I'm close to the same age. I hope I do not have a stroke or heart attack.

I wish you the best and hope you are hanging in there....

My wife has just finish her chemo this month and she going in next month for her breast to be removed. my question to you is she having trouble with the chemo leaving her body. I know your not a doctor if you are that's great. but she hasn't had a period in four month, she's not pregant but can the chemo stop her from having peroids. she breaks into sweats, she also has nerropathy in her hands and feet from the taxsaw. if you can help me out or refer me to a website i would really be grateful. thanks

I went for my frist chemo the 21th.If i take a ddep breath the port sight hurts all across sholders.the pain in my bones was so bad.hope everyone is having a better day! kathey

Alton wrote:

My wife has just finish her chemo this month and she going in next month for her breast to be removed. my question to you is she having trouble with the chemo leaving her body. I know your not a doctor if you are that's great. but she hasn't had a period in four month, she's not pregant but can the chemo stop her from having peroids. she breaks into sweats, she also has nerropathy in her hands and feet from the taxsaw. if you can help me out or refer me to a website i

would really be grateful. thanks

I would like for you to read information onthe website www.breastcancer.org They are knowledgable, caring people. To all of you in previous posts; I have walked in your shoes and suffered all of the complaints. It was 3 years 5 months ago and I am still counting. I too am on arimidex and yes, the joints and bones hurt like hell, but I am still here. I insisted both breasts were removed and it turned out to be the best decision I made. Good Luck to us all and keep fighting!

I am looking at my sister she is 62 years old and had cancer twice, chemo and radiation. She had so many memory problems she had to leave her job at 51.She was told she had frontal lobe dementia, and now alzheimers at 62. I really feel this started with the chemo, she used to joke about chemo brain and now it has progressed to this. She has had this for 12 years and she knows our names and has her personality, but cannot verbally communicate only at times. She said as she began to cry I am happy but I am no longer here. It breaks my heart, we do have some alzheimers in the family only they have been in there 80's and only a few removed from our immediate family. Has anyone had anything like this happen to a loved one?She can no longer drive,cook, or do normal things of everyday life. I hold on to her smile and her enjoying what she does have. I am 3 years older and I am still working and have some 65year old memory problems but I am not alarmed at this time. This is truly a sad and frustrating time we are not able to help others in this and I believe it started with chemo brain, she only weighed 89 pounds when she had it and I think that had something to do with it. Thank you for reading and hope and pray we are able to find some answers for all of us.

1990, had chemo, radiation and surgey for squamous cell cancer. Then, colonostomy and urostomy.
2005 left hip replacement - necrosis. Need right done.

Four surgeries on shoulders..tears. seems the chemo softened my connective tissue..like wet tissue paper. Last week, surgery could not repair a major shoulder tear.

Can't lift my right arm.

So much for being a long term cancer survivor. NOt good.

Good luch to you all.

As for chemo brain: yup.

i finished my chemo 2 years ago this month.. i still have extreme joint pain, i have the neuropathy in my feet and hands. i'm hoping it will go away,but i'm beginging to think it won't.

I'm sorry for you all that went to this unsolved dilema of c. and the awful side effect of chemo. I cannot be in your shoes because I don't know exactly what you're experiencing. I have my beloved Mom going through chemo right now, so far she have had six session of it. At first she was diagnosed with lung cancer, three month after she started chemo, she had a massive brain bleeding which was caused by the blood thinning medication (walfarin). She had to go through another major surgery just three month after she had a chest surgery. Today her Oncol doesn't know weather she wants to start with radio or continue with chemo. Does any of you know how many sessions of chemo are normaly required for a patient with NSCLC.
She is also very tied most of the time, is there any thing that she can use to aleast reduce this symptons
Thank you for your help.
"May the Lord God give you all what you need today"

I finished chemo about a year and a half ago. Every time I experience leg pain I fear it's the cancer spreading.

Help calm me!

Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

I am 60+-- stage 3 BC diagnosed/surgery Mar'05 -- finished chemo in July'05 and radiation Sept'05....and I think my procedures and following health issues were fairly typical of what I expected. I was told by both of my oncologists (chemo & radiation) that I'd be feeling results of both of those procedures - meds - for years to come -- so nothing that comes up really surprises me. HOWEVER in about July of '06 it dawned on me that "I finally feel like myself again!" Having had diabetes for 30 yrs. I've never had a huge amount of energy, so the lack of it hasn't been startling to me. My muscle strength hasn't come back the same, but it is getting better....finger tips are still tingling & a bit numb. I still need a sleep aid -- the surgery and chemo meds worked as a stimulant and that reaction has never left -- no matter how tired and sleepy I am, I wake up about 2-3am if I don't take something before bedtime. I wasn't working before BC, but I am now. I need to be out and around people, giving my spirit an uplift. I'm trying to lose the weight gained and I'm finally able to focus on that. Over all, life is good and I feel so blessed.

Haven't gotten on lately.It's been 1 yr 8 mons. Since last treatments at Karmanos Detroit, Mi. It was suggested that I may of had "Lupus" at one point then ruled out.ANA/Titer blood test revealed RATE 320. I do not have alzheimers/dementia, just some short term memory loss, and some was based on stress. I lost my mom (66 yrs old) 4/22/07 to Lung, Brain Metastatic cancer and Best friend 5/4/07 (age 45) to 2nd Breast/Lung/Brain/Bone Metastisis- we went through it together - I'm the lucky one..... After reading all these comments - it appears that all the new successful drugs are causing other problems, but we're alive. I started to feel like I was losing my mind with the Neuropathy 1st, thought it was arimidex because MOST who take it develop the same common joint problems ranging usually high with discomfort. Foot/hand pain, tingling numbness. Low Immunity problems for me from Tetanus reaction from finger cut (stitches) to a reaction recent from wasp stings.Slow healing w/cuts, more (r)thumb/index finger pain like arthritic on right arm that had sentinol nodes removed.
Now experiencing 6 months left inner tissue knee pain like a torn tendent,left foot top bones are tender(sprained that ankle like 5 times over the years). Energy is drained, get fatigued alot, stiff back/upper shoulders, neck w/o stenosis so far, can't lean on left wrist or upper elbow or reach backwards to say throw a pillow behind you. Trouble sleeping, excess worry based on feeling like I deteriorate some every month. Had Neurological testing, they say I have a higher than average IQ for someone my age, but its like instead of being 45 yrs old, my brain is 55 yrs. old. Stress can cause forgetfulness too with my mom and friends cancer. Watching someone disappear right before your eyes a little at a time is heart wretching to say the least, and emotionally I was such a wreck on top on being in Menopause now 2 years brought on by Adriamyacin/Cytoxin(6) and then Taxotere (20). So I am always worried. Did have a recent clear mammogram after feeling 3 small lumps, fat necrosis at area of Lumpectomy 2.05, previously SAME BREAST MASTECTOMY, HAD RECURRENCE THERE, upper right 11:00 position in what they call "the tail of the breast" that goes almost to armpit.
ONCOLOG ordered me to see another Rhematologist AN Oncological Rheumatologist next week. Curious what she has to say. This is frustrating. I just to know if there is releif in sight. I have lost 25 of 40LB gained by those damn steroids (little blue ones start with a "D" - forgot name) So I'm trying to get in shape, eat right, not drink ect....

Just wanted to add my experience also, since being through chemo 2 yrs ago at the age of 31, i could now write a book of my ailments/symptoms, which of course are very worrying as my mind also wonders is the cancer back ? We have been injected with a poison so to speak and yes we hope it is doing its job in erradicating the cancer but there are definite side effects that linger on for some time afterwards.

I just wanted to share this with you all - my husband is now going through treatment, both chemo and radiation, for Nasopharyngeal cancer. This is what gets us through:

WHEN YOU COME TO THE END OF ALL THE LIGHT THAT YOU KNOW, AND YOU ARE ABOUT TO STEP OFF INTO THE DARKNESS ,FAITH IS KNOWING THAT ONE OF TWO THINGS WILL HAPPEN, EITHER YOU WILL HAVE SOMETHING SOLID TO STAND ON, OR YOU WILL BE TAUGHT TO FLY!

I don't know who wrote this and I am not a religious person, however these words have gotten us through so far.

Look after yourselves, everyone.

I love the statement from Villoy - faith is knowing that when you step into darkness you will either find something to stand on or learn to fly! I am post BC treatment - FEC chemo and radio. Had Zoladex during treatment to put my ovaries to sleep - this is a new technique on trial - will it work, we don't know. I have sore joints, hot flahses and other side affects mentioned by many... I was wondering if anyone having gone through a similar stage of treatments has had their periods come back? I am 40 and hope my periods will return so that maybe, maybe a miracle will happen I can have a child. What do you think? I realise this question may seem trivial to some.

Robbin wrote:

I love the statement from Villoy - faith is knowing that when you step into darkness you will either find something to stand on or learn to fly! I am post BC treatment - FEC chemo and radio. Had Zoladex during treatment to put my ovaries to sleep - this is a new technique on trial - will it work, we don't know. I have sore joints, hot flahses and other side affects mentioned by many... I was wondering if anyone having gone through a similar stage of treatments has had their periods come back?
I am 40 and hope my periods will return so that maybe, maybe a miracle will happen I can have a child. What do you think? I realise this question may seem trivial to some.

Robbin your comments are not trivial i would be very interested to hear from people also regardng this. I am 33 and have been having zoladex injections along with tamoxifen for a year and a half now. I really want another child, I have a 3yr old son now and had hoped to add to the family, but obviously I am very frightened. My tumour tested highly for oestregen so I understand why they want my ovaries switched off and I was initially told I would be on zoladex for 2 yrs, so I would love to hear from anyone in a similar situation.