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Archive for July, 2010

We know Tamoxifen can cause Cancer of the Uterus, maybe it is time to investigate if it can also cause Metastatic Breast cancer.

I would like to tell this story because it may help someone else but also I am interested in the opinon of others.

I have always had yearly mammos and smear tests, all negative.

Seven years ago I had severe breast pain, it even hurt to walk, the pain so bad I would cry. I saw several doctors to ask for help, some suggested I take an aspirin others surgery and removal of my ovaries but no one told me the cause.

I was at my witsend and a friend recomended a well known gynaecologist in Madrid. Stephan and I left at 5 am one morning to take the train and meet with him, he asked for my latest mammo and results of a hormone blood test.

The results of my blood test proved my estrogen levels were very high and according to the doctor this was the cause of my breast pain. He went on to explain when his patients have this problem he places them on a course of Tamoxifen, I had never heard of Tamoxifen and did not know it was a hormone.

I started to take, as suggested 20mg of Tamoxifen a day, within six weeks the pain and swelling had gone..as if by majic, I was cured.

I stayed on Tamoxifen for four years and had to my knowledge no side effects.

One day out of the blue I had very bad gastric and was admitted to hospital, ( you know my history) and after surgery diagnosed with Invasive Lobular Carcinoma Metastic Breast Cancer Grade IV.

I seem to be the only woman to date who has had breast cancer BUT NOT in the breast…doctors are baffled but believe it had something to do with my taking Tamoxifen…somehow the drug ‘Put the brakes on’ and stopped the spreading to my breasts…or at least this is what the oncologists believe.

I have googled ‘Tamoxifen and Breast Pain’ and it does say in rare cases this is prescribed by doctors.

I was told because I had taken Tamoxifen for so long it wound not now work for me and this may prove to be the case as the cancer is not only back but never went away. I did try Femara but it left me a cripple and went back to Tamoxifen…

I am curious to know if anyone else knows

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Day seven and the sickness has passed, only to be taken over by Insomnia. I woke yesterday morning at 7 am and have not slept since. I am watching movie after movie but sleep will not come.

The sickness was bad, very bad, so bad I have refused to have any more treatment. I cannot and will not put myself through this.

My latest thoughts, maybe chemo induced , have sent Stephan into a tailspin. Yesterday, Stephan spent the morning looking for a dealer to buy marijuana….ALL medication I have been prescribed over the week-end has not worked to stop the wretching, my chest ,stomach and throat are raw, it hurts to swallow.

I have never been a smoker and have no idea how to inhale, if this fails Stephan will bake it in a pie…one way or another he has told me I will go to my next chemo session, even if he has to drag my there by the hair, he may have a job because according to MYOCET, I will be bald by then.

Marijuana he has promised me will stop the sickness and I am thinking about it..BUT only thinking.

I then think of my new friend and supporter , her name, Sonja she is one gutsy lady and puts me in the shade and makes me feel ashamed of my weakness to not fight when all this lady does is fight, fight and then fight some more.

Sonja is a member of ”Blog for a Cure”

I asked permission to use her post to show what a BITCH chemo is and what an amazing lady Sonja and her sense of humour have come to mean to me.

Sonja explains her side effects from Chemo, no doctor will ever tell you this is REALLY how it is BUT Sonja will.

Chemo is one powerful bitch!

The following is not a list of complaints. My posts, along with my journal are documenting my “journey” so I want to throw down some of the newer chemo side-effects for personal posterity. Won’t be fun reading but you’re welcome to it.

*Mouth taste: it’s as if I haven’t brushed my teeth in weeks – kind of furry, swollen, slippery; no amount of brushing changes it. Kiss me baby.

*Sores from the inside out: my hands, feet, mouth, nose, esophagus, rectum have sores that I can feel on the inside but mostly can’t see on the outside. For example, trying to bend my thumbs makes the palm-side joint feel like it’s going to rip open.

*Hair: loss of hair, lashes, brows is not a just a self-image issue. No nose hair means constant nasal drip, nose sores and unprotected respiratory; few lashes brings a lovely pea tinted goop that seals eyes shut at night and sometimes when blinking (No! Mr. I’m not winking at you, my eye’s stuck shut) – this eye goop comes from external crap landing and swelling in normal eye liquid and from “chemo trash” (my doctor’s words) trying to wash it’s way out of the eye; hair stubble is painful as it picks & sticks to, and rubs the wrong way on, a pillow for 10 to 15 hours – grrrr; pubic hair loss is shocking as purple tinted skin appears; leg, armpit & nipple hair loss has no down side, I’m going to Italy on the money I save not buying razors!

*Energy swings: Remember Lucy from Charlie Brown? She always pulled the football out from under poor Charlie just as he was feeling his most confident and able. I wanted to scream “that’s not fair!” Well, It’s like that when I’m confident enough to gently “work” a couple hours in my garden or cook dinner or defend myself against roving dog-hair-balls. I feel good and believe my body is benefitting from the exercise but what it really does is stir up all the chemicals and lands me on my back for recovery time. That’s NOT fair!

*Anxiety: OMG! Out of the blue anxiety, the likes of which PMS would die to have in its arsenal, sneaks up from behind and makes you want to jump out of your skin! Probably my most disparate cancer/chemo moment was an anxiety attack fueled by Compazine. It felt life threatening.

*Tears: like anxiety, tears are part of the game whether you feel like having them or not. Let-em flow, it’s good for sticky eye syndrome. There may be times when crying is a response to feeling and then there are the chemo tears; all good for pity’s sake. These tears are different from the constant eye “tearing” (see eye pea-goop above).

*Chemo brain: born a dyslexic, shinny-thing syndrome blonde I’m used to occasional brain failure but utter meltdown is noticeable. If there’s “chemo trash” flushing through the eyes, internal sores and the rest, what’s that poor swollen itching brain going through? I use the buddy system whenever leaving the house. Doc says forgetaboutit; things will return to normal a few weeks after chemo if complete.

*Weight changes: who cares! I’m already bald, sticky, scabby, crying and psychotic, who’s going to notice the weight?

*Blurred vision: possibly a blessing.

*Scent: maybe I stink too – do I stink?

I’m just sayin’ there’s hugs and kisses in that candy bowl, grap yourself a few fistsful. Sonja

P S GOOD NEWS! FRIDAY’S ULTRASOUND SHOWS A 50% TUMOR REDUCTION. ATTAGIRL!

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CHEMOTHERAPY:

I thought, as I have now started a second round of chemotherapy, I would place some information as to its function.

Chemo is harsh and not only from a womans point of view does it destroy our looks and ages us beyond our years…it is a two edged sword…chemo is the reason we are still alive.

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So many people have been so kind and left wonderful messages. I am going through the side effects at the moment but promise I will answer every single one.

I need a few days to get through this.

Meanwhile,this is the treatment I am on…this in my case is for advanced Breast Cancer.

 Write up by Macmillan:

Liposomal doxorubicin (Caelyx®, Myocet®)

Liposomal doxorubicin is a chemotherapy| drug that is given as a treatment for some types of cancer . It is most commonly used to treat ovarian cancer| and Aids-related Kaposi’s sarcoma| , but may also be used to treat advanced breast cancer| .

•Pis a chemotherapy drug. In liposomal doxorubicin the molecules of the drug are enclosed (encapsulated) in a fatty coating known as liposome. The liposome allows the doxorubicin to remain in the body for longer so that a greater amount of chemotherapy is delivered to the cancer cells, while having fewer side effects on healthy tissue.

Liposomal doxorubicin isn’t suitable for everyone who needs doxorubicin and you may find it helpful to discuss this with your cancer specialist, who will be able to advise you on whether this type of treatment is appropriate for you.

There are two liposomal doxorubicin drugs that work in slightly different ways and are used to treat different types of cancer. These are Caelyx® and Myocet®.

Caelyx® is a form of doxorubicin| that is enclosed in liposomes. It is sometimes known as pegylated doxorubicin hydrochloride (PLDH). It is used to treat:

•Advanced ovarian cancer that has come back after being treated with a platinum-based chemotherapy drug.

•Women with advanced breast cancer who have an increased risk of heart damage from other chemotherapy drugs.

•Aids-related Kaposi’s sarcoma .

Myocet® , another form of liposomal doxorubicin, is used to treat advanced (metastatic) breast cancer| in combination with another chemotherapy drug, cyclophosphamide| .

What it looks like
Liposomal doxorubicin is a light red fluid.

How it is given
Liposomal doxorubicin may be given by a drip (infusion):

•through a fine tube (cannula) placed into the vein, usually in the back of the hand

•through a fine plastic tube that is inserted under the skin into a vein near the collarbone (central line )

•into a fine tube that is inserted into a vein in the crook of your arm (PICC line ).

The Infusion usually takes 60-90 minutes.

Chemotherapy is usually given as a course of several sessions (cycles) of treatment over a few months. The length of your treatment and the number of cycles you have will depend on the type of cancer for which you are being treated. Your nurse or doctor will discuss your treatment plan with you.

Possible side effects

Each person’s reaction to chemotherapy is different. Some people have very few side effects; while others may experience more. The side effects described in this information won’t affect everyone who is given liposomal doxorubicin, and may be different if you are having more than one chemotherapy drug.

We have outlined the most common side effects and some of the less common ones, so that you can be aware of them if they occur. However, we haven’t included those that are very rare and therefore extremely unlikely to affect you. If you notice any effects which you think may be due to the drug, but which aren’t listed in this information, please discuss them with your doctor, chemotherapy nurse or pharmacist.

Lowered resistance to infection Liposomal doxorubicin can reduce the production of white blood cells by the bone marrow, making you more prone to infection| . This effect can begin seven days after treatment has been given, while your resistance to infection usually reaches its lowest point 10-14 days after chemotherapy. The number of your white blood cells will then increase steadily, and will usually have returned to normal levels before your next cycle of chemotherapy is due.

Contact your doctor or the hospital straight away if:

•your temperature goes above 38ºC (100.4ºF)

•you suddenly feel unwell (even with a normal temperature).

You will have a blood test before having more chemotherapy to make sure that your cells have recovered. Occasionally it may be necessary to delay your treatment if the number of blood cells (the blood count) is still low.

Bruising or bleeding Liposomal doxorubicin can reduce the production of platelets (which help the blood to clot). Let your doctor know if you have any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, or bleeding gums.

Anaemia (low number of red blood cells) While having treatment with liposomal doxorubicin you may become anaemic. This may make you feel tired| and breathless| . Let your doctor or nurse know if these symptoms are a problem.

Sore mouth and ulcers Your mouth may become sore| , or you may notice small ulcers during this treatment. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Tell your nurse or doctor if you have any of these problems, as special mouthwashes and medicine to prevent or clear any mouth infection can be prescribed.

Taste changes You may notice that your food tastes different. Normal taste usually comes back after the treatment finishes.

Skin changes Your skin may darken, due to excess production of pigment. This usually returns to normal a few months after the treatment has finished.

Areas of skin that have previously been treated with radiotherapy may become sensitive again while you are being treated with liposomal doxorubicin.

Soreness and redness of the palms of the hands and soles of the feet If you are being treated with Caelyx, you may develop red palms and soles of the feet, sometimes referred to as palmar plantar, or hand and foot syndrome. This effect can begin after two or three cycles of treatment, but is temporary. It will usually begin to improve within 1-2 weeks after the treatment is finished. You may be prescribed vitamin B6 (pyridoxine), which can help to reduce this.

It can also help to keep your hands and feet cool and to avoid tight fitting clothing, such as socks, shoes and gloves. Palmar plantar is unlikely to happen if you are being treated with Myocet.

Hot flushes or backache Some people have hot flushes or backache when the drug is being given.

Sensitivity to the sun While you are having liposomal doxorubicin, and for several months afterwards, you will be more sensitive to the sun and your skin may burn more easily than normal. You can still go out in the sun, but always wear a high protection factor suncream and protective clothing.

Discoloured urine Your urine may become a red/orange colour. This may last for a few hours after having liposomal doxorubicin and is due to the colour of the drug. It is quite normal.

Fever, chills and allergic reactions Back pain, breathlessness, headaches and swelling of the face may occur from the time the drug is given. If you do develop these symptoms the infusion may be stopped and re-started at a slower rate. Your doctor may prescribe a drug that can reduce these side effects and which can be given before your next treatments.

Tiredness and feeling weak It is important to allow yourself plenty of time to rest.

Less common side effects

Feeling sick (nausea) and being sick (vomiting) If you do feel sick this may begin a few hours after the treatment is given and last for up to a day. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent, or greatly reduce, nausea and vomiting| .

If the sickness is not controlled, or continues, tell your doctor; they can prescribe other anti-sickness drugs which may be more effective. Some anti-sickness drugs can cause constipation. Let your doctor or nurse know if this is a problem.

Changes in the way your heart works Liposomal doxorubicin can affect how the heart works. The effect on the heart depends on the dose given. It is very unusual for the heart to be affected by standard doses of this treatment. If affected the heart normally goes back to normal once the chemotherapy is finished. Tests to see how your heart is working may sometimes be carried out before the drug is given.

Hair loss

This is more likely to occur if you are being treated with Myocet than Caelyx, although it can happen with both. It usually starts 2-4 weeks after the first dose of liposomal doxorubicin, although it may occur earlier. Your hair may just thin but could fall out completely, although this is rare. You may also have thinning and loss of eyelashes, eyebrows and other body hair. Hair loss| is temporary and your hair will start to regrow once the treatment ends.

Injection site If you notice any stinging or burning around the vein while the drug is being given, or any leakage of fluid from the cannula site it is very important that you tell the doctor or nurse.

If the area around the injection site becomes red or swollen you should either tell the doctor on the ward or, if you are at home you should ring the clinic or ward and ask to speak to the doctor or nurse.

Risk of blood clots Cancer can increase your risk of developing a blood clot (thrombosis), and having chemotherapy may increase this risk further. A blood clot may cause symptoms such as pain, redness and swelling in a leg, or breathlessness and chest pain. Blood clots can be very serious so it is important to tell your doctor straightaway if you have any of these symptoms. However, most clots can usually be successfully treated with drugs to thin the blood. Your doctor or nurse can give you more information.

Other medicines Some medicines may be harmful to take when you are having chemotherapy, including those you can buy in a shop or chemist. Let your doctor know about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs

Fertility Your ability to become pregnant or father a child may be affected by taking this drug. It is important to discuss fertility| with your doctor before starting treatment.

Contraception It’s not advisable to become pregnant or father a child while taking liposomal doxorubicin, as the developing foetus may be harmed. It is important to use effective contraception while taking this drug, and for at least a few months afterwards. Again, discuss this with your doctor.

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Cancer patients are suffering unnecessarily because they wrongly believe that morphine and other opioids are only used as “comfort for the dying” and as a “last resort” rather than seeing them as legitimate pain killers that can improve their quality of life.

In a study published online (Tuesday 11 December) in the cancer journal, Annals of Oncology experts in palliative care also say “the belief that opioids hasten death is widely held” amongst patients and this “has a significant impact on pain management, as patients felt that an offer of opioids signified imminent death”. Previous studies have estimated that between 40-70% of cancer patients may not have their pain properly controlled with the right medication for a variety of reasons.

Dr Colette Reid, the lead author of the study, said: “If we are to employ the range of available opioids in order to successfully manage pain caused by cancer, we must ensure that morphine does not remain inextricably linked with death. If this connection stays in place then morphine will continue to be viewed as a comfort measure for the dying rather than a means of pain control for the living.”

Dr Reid, a consultant in palliative medicine at the Gloucester Royal Hospital, Gloucester, UK, conducted in-depth interviews with 18 patients with metastatic cancer, aged between 55 and 82, who were asked to take part in a cancer pain management trial. She wanted to examine how patients reacted when first offered an opioid drug described as similar to morphine. Dr Reid also wanted to understand the factors that influenced patients’ decisions whether to accept or to reject morphine. The interviews were analysed along with an experienced social scientist Rachael Gooberman-Hill, and Geoffrey Hanks, professor of palliative medicine, both from the University of Bristol.

The patients interviewed were all white and half of them were women. Their views and experiences about morphine fell into four distinct but inter-related categories: anticipation of death, morphine as a last resort, the role of the professional, and no choice but to commence.

Morphine as a “last resort” was the central theme to emerge from the interviews. The authors write: “We found that patients with cancer who were offered morphine for pain relief interpreted this as a signal that their health professional thought they were dying, because opioids were interventions used only as a ‘last resort’. Because participants themselves were not ready to die, they rejected morphine and other opioids as analgesics, despite the pain experienced as a consequence. Participants’ descriptions of the role of professionals indicated that patients value professionals’ confidence in opioids. Some patients may therefore become more frightened when offered a choice, since this indicates a lack of confidence in the opioid as an analgesic.”

It could be argued that the patients’ belief that the use of morphine represented a ramping up of treatment in the face of approaching death and the associated pain is a reasonably held view, especially as most of the patients interviewed for the study have subsequently died.

However, Dr Reid said: “The World Health Organization guidelines for the management of cancer pain state that analgesic treatment choices should be based on the severity of the pain, not on prognosis. So patients at all stages of cancer could have morphine if their pain is sufficient. In reality, the patients most likely to experience pain, and likely also to have the most severe pain, are those with metastatic disease, i.e. their cancer cannot be cured. These patients may yet have many months to live, but their quality of life is adversely affected by pain, since unrelieved pain leads to social isolation, loss of role and depressed mood. This was the group of patients that we interviewed – patients with metastatic disease and life expectancy measured in months.

“The fear of these patients was that morphine suggested imminent death (and also possibly hastened death) and that once commenced would mean that they would not be able to function normally. However, morphine if used properly, can actually promote quality of life by allowing patients with pain to function better.”

Dr Reid and her colleagues say that the role of the medical professional is crucial in helping to change patients’ beliefs and attitudes towards morphine. They write that the study’s findings “highlight the importance of the professional in cancer pain management, but also how beliefs about opioids that are communicated to the relatives of the dying may have implications for the pain relief of others in the future”.

Dr Reid said: “During the interviews, patients told us that that when a professional had been confident about opioids, then this had made them feel more able to accept the possibility of taking opioid medication. However, the main source of their fears was either personal experience or stories told by others. If more patients had good experiences with morphine (and other opioids) then the stories will be more reassuring.”

She continued: “Our interviews suggested to us that the patients detected professional ambivalence towards morphine and so this heightened their fears. They also told us that professionals had worried, incorrectly, about hastening death by using morphine and had communicated this fear to relatives. We are getting better at educating medical students about opioids and pain management, but another study we are involved in at the moment suggests that there are definitely educational needs for professionals. I think the role of palliative care teams is crucial here, since we can educate both professionals and patients.”

In an accompanying editorial, Dr Marco Maltoni, head of the Palliative Care Unit, Forlì Local Health Authority and Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori, Meldola, Italy, agrees. He writes: “Professional competence, correct communication, and a relationship based on trust are the three principle factors taken into consideration by patients when deciding whether or not to start opioid treatment.”

He concludes that the study “which originates from the birthplace of palliative care, is somewhat disturbing in the messages it conveys – extreme fear of opioids and high barriers to palliative care strategies. It suggests that a great many years of health education have not produced the results that might have been hoped for. The problem remains that a number of oncologists today still tend to reserve the use of opioids for the final stages of the disease. A vision of pain management and palliative care that is not solely linked to the end-of-life but rather seen as a positive option, in the less advanced stage of disease as well, needs to be promoted.”

http://www.esmo.org/

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Claudia , you have friends who love you, I and they, are very concerned because we have not heard from you for sometime now.

I understand you may be going through chemo and radiation treatment and know how sick you may be feeling . But please Claudia ,let us know you are OK and also your little angel how is she?

Support as you know is HERE, right by your side.

The poster: Citric Acid…has lent me her mail address for you to contact her and she will pass your mail on.

o.sauvage@hotmail.com

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The shock is over , there are no more tears, the battle has begun. It would appear I did not ‘Kick Arse’ enough the first time , so will have to try a little harder.

The cancer, is still breast cancer but in the Peritoneo..it is NOT Cancer of the Peritoneo, I have been told it is very important I understand this. However, it is adavnced grade IV

It seems the cancer never went away, but was hanging around on a street corner in my body, waiting to pounce. The problem goes back to the fact after my second round of surgery ,I only had five sessions…I should have had three more ,but Oncology were afraid ,if the chemo burnt my colon again I would be in serious trouble.

I have already been opened twice in the same area and my stomach is like a washboard…even when I lean forward my stomach stays flat…I look as though I have had a tummy tuck. Stephan ,often mentions women would pay a fortune for my stomach, I look like I have a six pack without even trying.

This morning, as I entered Oncology I was greeted by nurses who said how nice it was to see me again but would have liked to see me again under more pleasant circumstances. I had not cried since Sunday and their kind words brought tears to my eyes, I brushed them away and smiled, smiling is something I have not done much of lately.

I had a choice, would I like a chair which stretches out like a bed ,or would I like a hospital bed, I chose a bed as I thought I could maybe get some sleep.

I stretched out on white crisp sheets and waited for the nurse, she was young and pretty as she arrived with my ‘cocktail’ of treatment ,I explained my veins were hard to find and asked her if she was good with my problem, she said she was…Famous last words…the needle went in and she said she thought she had the vein…tried saline, to see if she was correct and the pain as the liquid blew my arm up into the size of a tennis ball…she ran for help leaving the needle stuck in my arm.

Stephan, looking at me from the door with sweat pouring down his face, I said ‘What are you sweating about ,its me with the needle stuck in my arm?. ‘You know I can’t stand needles Dan’ he said. I smiled.

The young nurse returned with a mature nurse, once again an attempt was made ,but now in the other arm, the other needle still in place ,they tried again…no..no luck , I now had two needles sticking out from my arms while they tried again…third time lucky , they had found the vein.

Treatment could begin, Stephan returned, pulled up a chair and started to massage my feet. Chemo forgotten, I was in heaven.

The nurses in Oncology are angels and they try to make our stay there a happy one. My machine, which was feeding me the chemo, started to bleep and the nurse came in to see what was wrong…her entrance and seeing Stephan massaging my scarlet painted toe nailed feet reminded her of a joke. Nurses and doctors are full of stories about patients and the comical things that happen..she swears this is true but I have my doubts…anyway she sat on my bed and this is what she said.

JOKE

When the husband finally died his wife put the usual death notice in the paper, but added that he died of gonorrhoea.
No sooner were the papers delivered when a friend of the family phoned and complained bitterly, ‘You know very well that he died of diarrhoea, not gonorrhoea.’ Replied the widow, ‘I nursed him night and day so of course I know he died of diarrhoea, but I thought it would be better for posterity to remember him as a great lover rather than the big shit he always was.’

I am still a litte bemused as to why Stephan massaging my feet would remind her of a shitty husband…but did not like to ask for fear of her response.

The morning continued with banter and jokes and I was laughing, Stephan said it was good to hear me laugh.

I have decide not to cry and not to feel sad , not even to feel anger, but to fight and I shall fight to win.

And if I lose, I know I will have given myself the best chance possible because I have the best husband and friends a woman could ever wish for and they are ALL beside me standing in the RED corner. Cancer, standing in the BLUE corner, all alone ,with an audience who hate him.

I am in a lot of pain this afternoon and for the moment refuse to take pain killers…I want to enjoy this pain, because I like to believe this is the chemo doing its job and ‘Kicking Arse’

And like Patrick Swayze, and his words from GHOST…I KNOW I will be taking the LOVE with me.

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