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Terrible pain and terrible fear - please help
Dear Ladies
I have been reading all your stories with interest and also amazement at how strong and supportive you all are.
I am writing on behalf of my darling aunty who is struggling with this terrible disease.
She was diagnosed in May 2006 with stage IIIC OVAC. She had a radical hysterectomy and omentectomy. Her surgeon said all the visible cancer was removed - although she did have ascites in the abdomen. Her CA125 went from the 200s post op down to 45 after her initial 6 courses of carbo/taxol but the cancer returned after around 6 months and although the scans were clear, her CA125 went up to 900!
It dropped to 100 during a second course of carboplatin but then started rising. So how she's had her first treatment of caylex (?) and 10 days post-treatment is in terrible pain in her back and stomach and ribs. She has been experiencing some swelling the past 3 weeks and her oncol siad this was the cancer growing again but that it was not "anywhere dangerous". Her GP (local family doctor) came today and I have to say this GP does seem to like to shoot from the hip as it were and is warning my aunty that this pain could be related to the cancer spreading to the rest of her body rather than the effects of the chemo.
So please can any of you offer any advice about pain, swelling or Caylex? My aunty is terrbily distraught and although she is not in any doubt as to the severity of her cancer (I mean who does take it lightly!), she is too almost too frightened to move.
Thank you all in advance.
I have been reading all your stories with interest and also amazement at how strong and supportive you all are.
I am writing on behalf of my darling aunty who is struggling with this terrible disease.
She was diagnosed in May 2006 with stage IIIC OVAC. She had a radical hysterectomy and omentectomy. Her surgeon said all the visible cancer was removed - although she did have ascites in the abdomen. Her CA125 went from the 200s post op down to 45 after her initial 6 courses of carbo/taxol but the cancer returned after around 6 months and although the scans were clear, her CA125 went up to 900!
It dropped to 100 during a second course of carboplatin but then started rising. So how she's had her first treatment of caylex (?) and 10 days post-treatment is in terrible pain in her back and stomach and ribs. She has been experiencing some swelling the past 3 weeks and her oncol siad this was the cancer growing again but that it was not "anywhere dangerous". Her GP (local family doctor) came today and I have to say this GP does seem to like to shoot from the hip as it were and is warning my aunty that this pain could be related to the cancer spreading to the rest of her body rather than the effects of the chemo.
So please can any of you offer any advice about pain, swelling or Caylex? My aunty is terrbily distraught and although she is not in any doubt as to the severity of her cancer (I mean who does take it lightly!), she is too almost too frightened to move.
Thank you all in advance.
Hello again.. and yes, it can take 2,3 or 4 treatments of Caelyx before it shows it's working. It took me 3 treatments before the numbers came tumbling down, and it worked really well for 3 months after I stopped taking it. If your Aunt can hang in, she should get some results soon. Even though the Doctors say they know the cancer is back, wouldn't it be reasonable for them to have your Aunt get some scans done, so at least they know where it is, and how much there is. I think even a second opinion could be a good idea. If a Doctor asks a person 'is her house is in order' then it seems that he is looking on the dark side of the situation, and that wouldn't suit me. I was dx Stage 4, 4 years ago, and my Oncol. has never said anything like that to me... and hasn't given up on me in anyway. If the Doctors give the impression that they have given up, then so your Aunt probaby will too. I hope she doesn't. Hugs to you and your Aunt...Helen...
Is your aunt in the hospital or did the dr. come to her house. I don.t know why they don't do a scan.Inever heard of a dr. not following up new problems with a scan. I requested one yesterday ,and got it , because i was having pain, but it was clear. Insist on a scan and more positive diagnosis! Is there o possibility of getting another dr? There are more chemos she hasn;t had, if the doxil doesn't kick in. The ascites is also a possibility. Best wishes donna
Thank you all for your kind comments
My Aunty has not had a scan for many months as her medical team said it was not needed as they knew that the cancer was back.
The strange thing is the the swelling seems to be moving about - it's not confined to one place in the abdomen. She has been given a patch for the pain by her doctor and it has helped but she is still in some discomfort.
It's now 10 days post treatment.....I heard that Caelyx/Doxil can take up to 3 treatments to really be effective. My aunt is thinking this may end up being too late for her....apparently her GP yesterday asked if her "house was in order?" I think that is a bit inappropriate.
My Aunty has not had a scan for many months as her medical team said it was not needed as they knew that the cancer was back.
The strange thing is the the swelling seems to be moving about - it's not confined to one place in the abdomen. She has been given a patch for the pain by her doctor and it has helped but she is still in some discomfort.
It's now 10 days post treatment.....I heard that Caelyx/Doxil can take up to 3 treatments to really be effective. My aunt is thinking this may end up being too late for her....apparently her GP yesterday asked if her "house was in order?" I think that is a bit inappropriate.
Hello... Like Marty says...Doxil is also Calyx..... here in Australia too. I've had it and it worked well for me, although I did get large and very sore mouth ulcers as a side affect. The numbers don't come into play with some of us.... mine is currently over 6000 and I still feel really well, and don't have any pain at all. We are all different in this respect, and with most facets of this disease. If your Aunt has a lot of fluid, that could be causing discomfort for her too. Is she an active lady? I stay active, and walk as much as I'm able to in between chemos, so I think that does help too. How long is it since your Aunt had any scans? They should be able to show any cancer that is still about. I firmly believe that if one can stay mentally strong during this, it does help the physical side of things too. I am celebrating this weekend, my 4th.year since being dx with Stage 4.... and looking for some more years. I wish your Aunt all the best, and hope she will soon be pain free and feeling much better....hugs...Helen...
My daughter has been on Doxil { called caylex in the UK} for 9 months now, for a recurrance, yes her bones hurt, she was on Tramadol until recently, they switched her to something else, don't know the name yet, her scans and CA125 show improvemnet. There are so many things a person can do to " feel better" while doing chemo, diet, exercise, attitude, I like the Lance Armstrong saying, I have cancer but cancer does not have me. She must get up and move, try to not dwell on the cancer all the time, that will tear up the soul. Get her the book The Power of Positive Thinking by Norman V Peale It works wonders for many. Marty
My heart goes out to you and your auntie. Doctors do not like to discuss terrible effects of chemo ..they blame everything on cancer. Well yes cancer we are fighting all right but if you say this doctor likes to shoot from the hip I would question him further why he thinks that way. Really, doctors of Oncology ...do they know how we feel taking this chemo into our veins and what terrible side effects we go through...NO!!! THEY DO NOT KNOW untill they get into our shoes.
Lots of LOVE to you and your AUNTIE. I wish her all the BEST and tell her to be strong mentally...Sunes.
Lots of LOVE to you and your AUNTIE. I wish her all the BEST and tell her to be strong mentally...Sunes.
Hello. If I may put few cents into this post.
TRAMADOL- I used this instead morphine after hysterectomy and it works wonders and doctors told me that it does NOT supress your immune system like morphine does.We need our immune system to heal after the surgery and word off some left over cancer, and if the immune is turned off we do not heal as fast . Please read more on this painkiller. Thank you all, Sunes.
"""Tramadol is usually marketed as the hydrochloride salt (tramadol hydrochloride) and is available in both injectable (intravenous and/or intramuscular) and oral preparations. It is also available in conjunction with paracetamol (acetaminophen).
Tramadol is approximately 10% as potent as morphine, when given by the IV/IM route. Oral doses range from 50–600 mg daily, with up to 400 mg daily when given IV/IM. The formulation containing APAP contains 37.5 mg of tramadol and 325 mg of paracetamol, intended for oral administration with a common dosing recommendation of one or two tabs every four to six hours.
Unlike most other opioids, Tramadol is not considered a controlled substance in many countries (the U.S. and Australia, among others), and is available with a normal prescription. Tramadol is also available over-the-counter without prescription in a few countries.[3] Tramadol is sometimes mistakenly classified as a non-opioid analgesic, because its abuse liability is lower than that of other opioids and because it has multiple mechanisms of action (not only, but including, mu-opioid activity).
Tramadol is used to treat moderate and severe pain and most types of neuralgia, including trigeminal neuralgia.[citation needed] It has been suggested that tramadol could be effective for alleviating symptoms of depression and anxiety because of its action on GABAergic, noradrenergic and specifically serotonergic systems. However, health professionals have not yet endorsed its use on a large scale for disorders such as this."""
TRAMADOL- I used this instead morphine after hysterectomy and it works wonders and doctors told me that it does NOT supress your immune system like morphine does.We need our immune system to heal after the surgery and word off some left over cancer, and if the immune is turned off we do not heal as fast . Please read more on this painkiller. Thank you all, Sunes.
"""Tramadol is usually marketed as the hydrochloride salt (tramadol hydrochloride) and is available in both injectable (intravenous and/or intramuscular) and oral preparations. It is also available in conjunction with paracetamol (acetaminophen).
Tramadol is approximately 10% as potent as morphine, when given by the IV/IM route. Oral doses range from 50–600 mg daily, with up to 400 mg daily when given IV/IM. The formulation containing APAP contains 37.5 mg of tramadol and 325 mg of paracetamol, intended for oral administration with a common dosing recommendation of one or two tabs every four to six hours.
Unlike most other opioids, Tramadol is not considered a controlled substance in many countries (the U.S. and Australia, among others), and is available with a normal prescription. Tramadol is also available over-the-counter without prescription in a few countries.[3] Tramadol is sometimes mistakenly classified as a non-opioid analgesic, because its abuse liability is lower than that of other opioids and because it has multiple mechanisms of action (not only, but including, mu-opioid activity).
Tramadol is used to treat moderate and severe pain and most types of neuralgia, including trigeminal neuralgia.[citation needed] It has been suggested that tramadol could be effective for alleviating symptoms of depression and anxiety because of its action on GABAergic, noradrenergic and specifically serotonergic systems. However, health professionals have not yet endorsed its use on a large scale for disorders such as this."""
I'm sorry I can't offer you any advice about Caelyx, but I would think her doctor could control her pain. Is the swelling related to the ascites maybe? Usually chemo will dry that up, but I don't know what is the normal timeframe. Mine dried up with carbo/taxol very quickly and gave immense relief. Sorry I'm not much help and I hope someone else with some experience with this drug will jump on here. I just wanted to tell you how sorry I am that your aunty (and those who love her) is going through this. Paula
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