Isn't it weird what makes you feel better?
I had my oncologist checkup today. Some of you may know that I quite like my onc - he's always been supportive and honest with me and never disparaging. At the checkup today he was, as usual, asking me questions about how I'm faring with the Letrozole and he was pleased that some things have improved, less pleased that some things are worse, and commented on how little people realised the impact of hormones on the body. He did say, however, that he noted the side effects of the drug were so hard on me that he had thought I wouldn't see the first year out (it's been nearly 2 1/2 years now). Now, he has never given me any reason to think that he didn't believe me - completely the opposite - but that statement of acknowledgement has made me feel so much better.
Chemo Journey
I wanted to let others know about my chemo journey which started on the 16th Sept with 4 rounds of AC (after mastectomy in Aug). I am now on the Taxol regime for 12 weeks and have completed 4. It has all been manageable so far. I have experienced a few of the side effects but with medication, no nausea. The other side effects (a few mouth ulcers, Kenolab, dabbed on them first thing and they cleared up), some tingling but not too bad (reflexology offered by the Cancer Association) and fatigue (mostly in the late afternoon, where I have done nothing other than sit on the couch and read my book) have all been under control so far. I travel up to Perth from my home of Busselton (almost 3 hours drive) each week for treatment the following day and stay with my daughter but drive home first thing the next day. I have a few friends and my sister who sit with me, so that's a good opportunity for a catch up albeit I am having the infusions. My friends have been wonderful distracting me during this time. I think the steroids have made me extra hungry but I have n't put on weight so far. I have been drinking alcohol free drinks (Edenvale wines) which are acceptable when I feel I want something different over the festive season. My oncologist has reduced the premeds for the Taxol, so that will help with side effects. I am just hoping the next 8 weeks will progress in the same way. Happy New Year to you all going through this journey as well and I hope you get strength from the good things that surround us.Letrozole and Prednisolone
I posted on another discussion thread the other day that my oncologist was very unhappy with the joint pain that has gradually crept in over the 8 months or so that I've been on Letrozole. As well as okaying painkillers, he gave me a first option of prednisolone over 7 days to see how it would work. I took my first one this morning, hoping that it would make a perceptible difference and that I might see some improvement by the weekend. I got up from my desk at midday and walked across the office - shocked that I thought about the process after I had already taken a few steps. Tonight, during dinner, I got up from the table to let the cat out. To make it clearer, I just stood up in one motion and started walking. Last night, to get up from the table took me swinging around sideways in the chair, painfully levering myself up using the table and bench for support, getting my balance, then slowly straightening my body over the course of a number of hobbling steps. I turned around to go back to the table and saw one of the kids with her mouth open - "Mum! You just got up to let the cat out - did you realise that!" I feel overwhelmed...I don't know what I feel... I knew it was bad but I don't think I realised how restrictive it has become. I'm scared in case it's some anomaly. I'm scared to hope that it will keep improving and that the improvement will continue after the course is finished. I'm not sure I can go back to feeling the way I was. I'm not saying that I'm pain-free. My legs are really aching after a day at work and my joints are still sore but they're sore in a way that I can feel it, not stiffening up and sore in a way that I can't actually do anything.
Xeloda -- foot care
Hi Xeloda users! This might not be news, but it was news to me so I thought I'd post it. I've been taking Xeloda for nearly five years, so have tried many potions and pastes on my feet to keep them walkable. For the last couple of months I've been using emulsifying ointment PB (paraffin wax with no flavours, colours or smells) with success; there has been less swelling and redness, no cracking and bleeding, and less peeling. I've been able to walk kilometres instead of just metres, so I'm really pleased! I was so confident that I tried some sexy boots but that was a setback after a night out, so it's back to the soft lace-ups, but my feet are still so much better. Hope it helps others too.
INVISIBLE WOUNDS and The Power of Words.
I have a sad but true story about somebody who thought his feelings weren't valid or acceptable. At 3am one morning a man turned up at his home in a taxi. His wife didn’t expect him, surely somebody would have told her he was coming. He was snuck in under the cover of darkness, without announcement, so he wouldn’t have to deal with the fall out that would be waiting at the airport during daylight hours. He was told not to speak to anybody about what he had seen or been involved in as nobody wanted to hear it, some people thought he shouldn’t have been there anyway. There was no debriefing, no counselling and nobody to talk to. Anybody who hadn’t been there wouldn’t have understood any way and the only ones who could comprehend were under instructions to be quiet and keep a low profile. He wasn't to make other families scared or angry if they still had relatives over there. Nor was he to lower morale of anybody about to go. He was told to have the rest of the week off, get back to work and on with his life. Toughen up. It could be worse, he could have died there right? At least he was alive. He was never the same. How could he be. There were no forums to be able to express the ongoing fear, the anger, the depression, the nightmares, the daily pain. No validation that his thoughts were normal given the situation. No empathy for the constant anxiety. No friends to say, hey mate, I know how your feeling. I get it, I’m here for you no matter what you want to tell me. Those things could not be let out until somebody decided it was acceptable. By that time, it was too late. The years of keeping all that locked up, feeling like nobody wanted to hear what he had to say, that he was weak for not being able to get back to normal and just put up with the fallout had turned into a bottomless dark pit with seemingly no way out. The story finishes at the end of a lonely dirt road with a car, carbon monoxide and a devastated family. There have been many discussions about likening a cancer diagnosis and all its fallout to PTSD. There have been a number of discussions closed (and rightly so when it becomes a slanging match) when things go totally off tangent. Moderation by the moderators is at their discretion and this is their gig. However, what is not helpful is being moderated (even unintentionally) amongst our own community. People are encouraged to see councilors and talk it out. Sometimes all that is needed is a good chat on here. Everybody’s safe place right? We all need to stand and support each other together or some of us will fall.
I'm on holiday... from Letrozole!
With my oncologist's blessing, as of today, I am stopping Letrozole for a month. A Christmas present to myself. The two main side effects are the permanent bone ache in my ankles and thumb joints. I am very interested to see how quickly they go, if they go at all. I'm also curious to observe the effect on my brain, again, if any. Mucosal dryness is the other annoying side effect. When I start taking it again on 1/1/19 I'll try taking it at night. And after observing what happens for a month, I'll add curcumin to the mix. The clinical trial continues!
Breast oedema
Saw for breast care nurse today as I've still got a lot of swelling and pain in my breast, which I thought was the seroma. But she says I've also got oedema of the whole skin of the breast too. She taught me the correct massage technique to manual drain my lymph nodes- hurt like hell. Wants me to do it 3 times a day for 2 wks then go back for reassessment and if not working then to lymphedema specialist for ultrasound technique. I came home and taught the massage to my husband.. must admit he enjoyed it lol!
Radiation - 6 weeks completed with no tears ... some tips.
Hi all, I just finished the standard 5 weeks of daily radiation to my right breast where I had a lumpectomy last June plus 1 week of daily 'boosts' to the tumour site. The rad onc recommended QV cream and body wash. However, I had read on BCNA that people were having success with MooGoo Original Udder (haha!) milk/cream. It comes in a pump pot...I went through two bought at Pharmacy 777. I showed it to the chemo onc before treatment and he okayed. He said he knocks some alternatives back as they contain reflective metals. I am fairly pale skinned with some feeckles, tan lightly if I use sunscreen, burn if I don't, dark hair and eyes. I applied the MooGoo 3 x daily, slathered it on. Then put on a loose fitting t-shirt I could chuck out later. At night I used the QV soap free bath wash for extremely dry skin...not just dry skin. In the day I didn't wear a bra as was at home. Going out I wore a soft bra to my appointments. I developed a pale sunburn colour around week two and my breast and nipple were quite warm after treatment during the last two weeks. Minor itchiness on collar bone. During the last two weeks the nurse told me to do salt water baths to the breast to remove heat and redness. These really work! Boil water, use 1tsp of salt per litre of water and mix in. Store in fridge. When cold, use a clean flannel and cover breast rad area/armpit and leave for ten mins. Pat dry and apply cream. I know we all have different reactions and skin types, so this may not work for you. But my nurse said she was very very pleased with my results and had seen some very red angry breasts! She even documented MooGoo as an alternative for others. The rad onc said he was pleased and I should be too, as did the technicians. Don't underestimate the salt water breast spas! When you take the flannel off you can feel how much heat it has in it! I can send a pic to anyone who would like one - I know some people early on are really worried and I think most of WA has seen my breasts ... feels like it! *Remember to ask your rad onc and that we are all very different in our reactions if you are thinking of giving it a try. Good luck with rad ... mine was great at GENESIS and it was a walk in the park after my chemo! xxxPeripheral Neuropathy success
(Re posted as requested with new title) Just thought I would share the success I've had with Alpha Lipoec Acid for my peripheral neuropathy. It's an antioxidant support, I've been taking 1 tablet with breakfast and dinner, 400mg (says you can up to 3 a day) suggested by my Med Onc and it has really helped! I hope others may have success with it too xxLetrozole - Is there a light in the darkness?
I'm very, very cautiously expressing hope that things may get better on Letrozole. Some of you may know that I have been one of the unlucky ones to have very severe side effects from the AI. Joint pain, soft tissue pain and injuries have been hugely debilitating for almost the entire time I have been on it (ticked over 2 years at the beginning of August). Well, I hesitantly say this... I got home from work on Thursday, got out of the car and thought, "that's weird - almost no pain". Now this is the time of day that I am usually struggling really badly and hobbling into the house as quickly (joke) as I can to medicate. No need to hurry. I am still feeling that way. And it can't be due to warm weather because it has been freezing here. I am not abandoning the medication that has taken the edge off the pain enough to make it manageable, but I am hoping that I have turned a corner. I have to admit that I'm also in slight state of disbelief and a bit suspicious that things could change so radically. My oncologist said a couple of appointments ago that often after about 12-18 months pain settles down but I think we were both disappointed and resigned that this wasn't happening for me. Given I am on this for at least 8 more years that's no minor obstacle. I realise that it might get bad again but I can now hope that it will also get better and maybe this will also give others hope for the same.