Thanks for your kind words ladies. xxx
Hi Waffles,
Sorry you have to change chemo again, but I am sure they will find one that suits. I am still on Cape, but have had to have a dose reduction as side effects, mainly dodgy tummy were getting unbearable. Can you have RFA on your liver mets? Depending on results of scans, I am due to have a liver resection as they couldn’t perform RFA on my mets, but I know it is an option for some people. All the best on your new treatment, Waffles.
Hi George,
He mentioned that and said it was only appropriate if one met wasn’t shrinkng but the others two were. Apparently chemo is more appropriate if they are all growing like mine. I didn’t really understand but was a bit too shell shocked to question anything. I think I will as again on my next appointment. xxx
Hello Waffles…sorry to hear your news.
i had Navelbine for 6 cycles and nothing shrank…hopefully the new chemo will bring a miraculous result…it is taxotere, isn’t it? I had that initially. Cant recall alot now,but it did gove me numb feet and chased my hair away. Avery effectiv rug thoxxx
best wishes,
Moijan???
Yes, it is worth asking. I have 3 liver mets, all apparently in right lobe so, depending on results of next scan, they are going to operate. RFA is supposed to be an effective treatment. However, my Onc did say that chemo can shrink and even destroy mets so it is always difficult to know what to do for the best; he advised me to delay op as chemo, so far, is working. Good luck with your new treatment.
Hi Moijan,
Yes it’s Taxotere. I’ve had Taxol before as a primary treatment and thought it didn’t work at the time but my onc read me back the notes from 2006 and it obviously did.
George, I’m definitely going to check out RFA. I have l extensive bone mets so I’m not sure if liver resection would be doable. Best wishes. xxx
Hi Waffles,
I have extensive bone mets too and, like you, am on third treatment in last 18 months. Worth asking to be referred to a liver consultant that is what my Onc did. He wrote a letter to liver consultant to see if I would be suitable for RFA or SIRT or resection. First two eliminated, but consultant said he thought he could operate. However, delay as.onc suggested I continue with Cape for a while longer. Stressful as I worry Cape will stop working before op. Also, will need new scans as last CT was September. Never a dull moment so plan could change. ?Hope all goes well with your new treatment plan.
George
Thanks George,
I forgot about your bone mets. Thanks for your advice. I’m going to speak to my onc again and ask if I can see a liver specialist. I can’t really understand oncs reasoning about why RFA isn’t suitable. I hope Cape continues to work for you so you can get your op. xxx
Thanks, Waffles. Think general criteria for RFA is size ( the liver consultant said they needed to be less than 3cm, but Macmillan said 5cm), position (not next to a main artery) and number.Also, they need to be visible on a CT scan. I am certainly no expert so might be an idea to get more information from Macmillan website; they have a good fact sheet re: treatments for secondary liver mets. Anyway, Onc seemed confident that chemo was an effective treatment so I am keeping my fingers crossed. Everyone is different so sure they will sort the right treatment plan for you. All the best and have a good week. I am off to the sales now. Retail therapy always a good distraction for me?
George x
Hi George,
Not sure that size mets are now. The largest one was under 2cm when Cape failed and apparently they are still classed as low volume.
Barton, thanks for your kind words. Will keep in touch. xxx
Hi Waffles
That sounds very positive, seems like they are small. Sure your team will sort out a plan for you. I know how unsettling it is when treatment plans change. I am seeing onc’s registrar next Tuesday(onc on leave)and dreading that he might say TMs on rise again. However, keeping myself distracted. Good luck with your Onc meeting. When did you say it was?
George x
Hi George,
Good luck with you appointment. Mine’s is the week after yours. xxx
Good luck with your appointment too. Have a good New Year’s weekend. x
George.
After being told just over a week ago that my BC is back after 12 years, I had my first bone scan today. They had problems with the injection as I have challenging veins, and after looking at the pictures they repeated the scan of my ribs with my arms out of the way. They told me the consultant will look at it straight away and hopefully somebody will quickly contact me with a plan of action as the initial plan was to start Cap next week. The swollen lymph nodes in my neck are getting worse, i’m starting to feel like somebody is strangeling me, and I am struggling to walk very far without being completely out of breath.
Hello Sandra
Welcome to our threads …phew sounds like you are feeling very uncomfortable and need treatment quickly.
Maybe they could give you some rads to the swollen lymph glands to make you more comfortable ?
My secondaries came back after 11 years too but mine are hip and pelvis area which affects my mobility which has changed my life completely.
Carolyn xxx
Thanks Helen,
I’m still in shock I think. Partly because I’m worried nothing else is going to work for me anymore Partly because I’m moving from tablet chemo to very heavy duty IV chemo and I won’t be able to hide my illness from most people anymore.I think I need to work on my inner strength a bit as it is a bit lacking at the moment. I’ve bought my self loads of books and dvds to try to get me back into distracting mýself.
xxx
Sandra, hope you are feeling a little better. Of all the problems i have had with SBC, breathlessness has been the worse. I had pleural effusions and pleruodesis and have had oxygen. I have been told i need it again as my sats drop on exertion. I did buy an oxygen meter thing…about £12 off internet. I doint do much to exert myself but just use it to check when i feel breathless. My sats are a bit lowere than a normal reading but i find its my pulse rate thats high. I did find that my skin mets healed beter when i was on oxygen so my onc is requesting a regular supply. Apparently cancer cells dont like oxygen but as fart as i know no one has been given oxygen therapy for this reason??. Let us know how you get on. xx
Thanks Funnyface and streshead
I got an appointment with the GP this morning, she examined me and said there is fluid in my lungs and presure from my lymph nodes which is causing the pain and breathlessness. She was reluctant to prescribe anything without the oncologist approving. She told us to ring his secretary, we have spent hours trying to get through without any success. It is 2 weeks today since the SBC was confirmed but because of Christmas/New Year I am still waiting for a treatment plan.
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Hi Janni, from what you have said your next scan is due in March, is that right? If so, MAy is far too long to wait for results…they do usually take about 3-4 weeks to be procesed but you ned to be seeing yor onc as soon as possible after that. If it were me i’d speak to your BCN or onc team. The stress of scans and waiting for results is something none of them can appreciate unless theyve been there. Anything you are not happy about,shout it out til yo get a satisfactory answer.Many of us have learned the hard way that keeping quiet and accepting what you are told is not an option. Let s know how you get on. xx