Dear All. As promised an update on my precarious position. After the shock and trauma following my oncologist meeting three weeks ago, where he told me that carbo/caelyx hadn’t worked for me (1st recurrence), that I was platinum resistant and there wasn’t much hope left, I went nervously to the meeting at the Royal Marsden and met Dr SB. She really was pleasant and patient and, despite a hectic clinic, spent some time with us. The bonus was I also met Laura, who is as delightful as her caring posts suggest. Thank you Laura. The outcome is that I shall go down the weekly Taxol route at my local hospital, possibly starting after Christmas. I have been told that I may need a line in, so my next question is which one do I go for and why? It appears the RM favour the PICC line, my GP referred to a Hickman line and I recall reading on here about a port. I am confused! Any advice/comments on this, or experience of weekly taxol would be most welcome. Hoping everyone is as well as can be. Love Carolyn x 🌸
Update : Dear All. As promised an update on my... - My Ovacome
Update
Dear Carolyn,
I am so glad you posted!
But I am very sorry we could not have met up for a longer discussion that day at the Royal Marsden.
Meanwhile, I have this to say about Port or PICC.
I have had both. 3 PICC lines and one Port.
I loved my PICC Line, but it did not love me. My first one had no problems, except for my sensitivity to the Chlorhexidine wipes and solution they clean your skin with, which caused such an awful rash, that when I had my second PICC for my first recurrence, my arm was so red and swollen, I did not realise I had a blood clot in my shoulder.
The problem with PICCS is that they do get blot clots around them, maybe because our veins have narrowed. These are usually in the shoulder area.
I changed to a PORT then, but my hospital does not sedate you for the port insertion, which is a much bigger deal to place, than the PICC.
The insertion was very traumatic for me, much worse than anything else I had suffered during all my cancer related problems.
Therefore, I hated my PORT, although it worked fine. They usually go in your upper chest, while the PICC goes in your upper arm and is hidden by a sleeve.
Somehow, the port protruding from my chest really bothered me.
However, in my third PICC, I got anther blood clot and I am giving up on them and getting the PORT.
Fortunately, the Royal Marsden will sedate me and I trust Kevin, the technician, not to hurt me.
The other good news about the Port is that you can shower normally and do not have to worry about getting it wet.
Now: weekly Taxol.
Taxol is really toxic, so I trust it to destroy your cancer.
BUT, unless you use the cold cap, you will lose your lovely hair.
And, it hits like a ton of bricks 3 days after infusion. The weakness and fatigue are levelling, but if you are too impaired, they may need to lower your dose. You are a slight woman and you should be aware of how hard it can affect you.
I get my infusion on Tuesdays and can function semi normally on Wednesday and Thursday, but want to stay at home or in bed, Friday, Saturday and Sunday.
You will get a rest week that is amazing. You can be nearly normal for seven whole days!!!!
So as long as you manage your digestion and rest as needed, you will be good and The Taxol will destroy your cancer.
Sorry this is so long, but I hope this helps,
Hugs,
Laura
Oh, dear Laura, that is so kind of you to respond so quickly with such good information. I was so very pleased to meet up with you and despite the short time, it was more than worth it to actually meet you. I feel a bit nervous about blood clots. How did you deal with that? As for Taxol, does it hit hard every week or just the first week of each group of three? And by ‘digestion’ do you mean nausea or bowel problems, they are always my worst problem! Sorry that your lovely answer has prompted more questions. Thanks again and all best wishes for your next port fitting. Love Carolyn x 🌸
Yes, Carolyn, by digestion, I mean everything, from nausea to bowels, to acid reflux, but these can all be managed with prophylactic anti- nausea meds, Docusate Sodium, etc.
TAXOL - The Taxol hits me more it less the same every week. I might be extra sensitive to it though.
Meanwhile, Blood-clots are not as terrifying to me anymore.
They filled my lungs when I was first diagnosed (Ovarian Cancer notoriously causes sticky blood - so we are more likely to get blood clots).
They prescribe a strong blood thinner called Daltiparin/Fragmin that we learn to inject ourselves with and soon the clots dissipate and all is well.
But, if you can get a Port, you are less likely to get a clot.
This is a long strange trip and we learn a lot as we go along..
Good luck with your choices.
Hugs,
Laura
Goodness, I reckon with the vast amount of knowledge and experience on this forum, we are a force (& a resource) to be reckoned with. What an amazing elite club we are!
I am already on Clopidogril (blood thinner) so perhaps this will help. Always my main nightmare is constipation, I have tried everything in the book, all with limited success. I heard late this afternoon that I am to see my oncologist next Friday, then he is away for a month. So watch this space.......
Take care of yourself. Love Carolyn x 🌸
Hi Carolyn
I finished weekly taxol in October for my second recurrence since diagnosis in 2016 - I think it’s possible I’m the exception to the rule for many reasons. Firstly mine really was weekly - I only had one week off when I was on holiday. As I had an allergic reaction to taxol in 2016, I had to have quite a lot of steroids which kept me going the next day (Saturday). I felt a bit ropey on Sunday but was able to go out for coffee with friends on Monday. I walked on most Tuesdays (not my usual 7 miles, but just around the local park), went horse riding and dancing on Wednesdays and saw loads of friends and went shopping on Thursdays. Then it was time for more. I didn’t use any of the anti sickness meds apart from the steroids. I didn’t lose my hair although it thinned and came out more dramatically a week after I’d finished, as did my eyebrows and eyelashes.
I was constipated, had restless legs, didn’t sleep well and was very tired for some of the time. I learned to listen to my body and sleep when I needed to without feeling guilty.
Although it brought my CA125 down from 1800 to 600, I have some disease progression for which I’m going to have more chemo. Hopefully they’ll leave me until after Christmas.
It goes to show really how devious and unpredictable our cancers are and how different folk respond differently to treatments.
I didn’t have any sort of in-dwelling line, but on one occasion had eight attempts at cannulation. Next time I’ll definitely have one.
These are just my experiences Carolyn - I hope you manage to maintain a reasonably normal life during your treatment and that it works well for you.
Best wishes to you, Ali x
Wishing you the very best. I hope this does the trick for you. ❤️
Hi,
I have no experience of lines so can’t help. However I am on weekly taxol. I had 8 weekly infusions then three months of when I fitted in a holiday. Then another 8 infusions last one coming up on Tuesday. It is a low dose 120mg. I have used the cold cap and still have a full head of hair.
Side effects for me have been very minor, breathless when walking up hills or stairs and a slight nose bleed. My neutrophils dropped a lot and I have to inject filgrastim which is quite easy. We all react differently.
Good luck
Hi Katiebairdie. I am so pleased that you seem to have tolerated it quite well, and the cold cap has meant you have kept your hair. I thought the usual routine was three weeks on and one week off? Do different hospitals choose routines according to the patient? Thank you again and I do hope this is all very successful. Take care. Carolyn x🌸
Hi Hun xx had my port in now 4 yrs ! No problems, left it in even after being told Ned! Just new it would come back so left it! It’s a blessing wax sedated having it fitted took about 40 minutes I think no problems at all forget it’s there if really is a easy option! Used for my scans everything! Ready for caelyx next😡 big hugs xx
Goodness, that’s interesting! Will ask the oncologist if this is an option for me. Good luck with the caelyx, hope it goes well. Take care. Carolyn x 🌸
Hi Carolyn. I have just had a port fitted on Friday. This was under a general, and I found it quite painful afterwards, however the District Nurse has told me today that this is a result of the inflammation etc, and it will settle down. There was another lady who had one fitted as well, and she also found it more painful than expected. I looked into the options extensively, and decided on the port as opposed to the PICC because of less upkeep. Bearing in mind that it is now summer here in NZ, and I felt it would be easier. One tip would be to decide on either before you start chemo. I have already had two infusions, and had the port fitted a few days after the second one. I was already feeling under the weather, and it just put extra load on a system which was already under pressure. I had to do this as I was down to one viable vein, and they were concerned it would not last the distance. They also preferred it to be 10 days prior to next chemo, so it had time to heal. If chemo was sooner, they would have inserted the needle ready. I am on third line.
Make the decision before you start. Also bear in mind that you can see where the port is located. Mine is off centre of my chest on the right side, and there is another cut above my collar bone where the tube goes. They need to place it where it will work best, and this is individual. The other thing about a port which is a positive, is that it can be left for a few years, as opposed to a PICC which needs to be removed once treatment is finished. Hope this helps. Therese
Hi Therese. Thank you so much for your advice. I will definitely ask for something to be fitted before I start. Were you given a choice? I’m sorry that it has been sore for you and hope this settles soon. Hopefully you will be able to enjoy summer in your lovely country. Good luck. Carolyn x
We had hoped it would not be necessary to have one, however it was always a risk as the chemo itself does damage those veins they use., and this is third line for me. I was down to the last viable vein, and they were not confident it would last. Probably should have managed the risk and bitten the bullet and had it done prior to starting. At least I will not have to suffer the four or five times it took to access a vein each time. Was extremely painful.
Sorry to hear you’ve had such a painful experience too. The last three months of chemo in the summer were a nightmare as my veins were so difficult to access, and incredibly painful. So I do sympathise with you! So pleased you have now got over that hurdle. Watch this space for mine....! Carolyn x
Dear Carolyn I am sorry I have not replied sooner just seen this post and previous post you really have been going through a tough time. Great that you got a second opinion and you have a plan which gives you hope.I can,t give you any advice on the lines or weekly taxol, I can only wish that you have few side effectts and the treatment works.Isn,t it so wonderful that we have this group that give endless upto date information and empathetic support.It brings me immense comfort and reading your posts it would seem the same is true of you.
I just finiished chemo in Aug for second reoccurence , with a lot of assertive questioning, e mails, letters and the absolutely invaluable help of Ovacome who rang the Chief Medical Officer of England, who got in touch with the appropriate drug firm, who got in touch with the local hospital pharmacy I started on ..Niraparib nearly a month ago. ,some side effects but I can live with those. So forward and onwards with both go.
Thinking of you.
Hello Chris. Lovely to hear from you again. Yes, this forum is an immense resource of knowledge, wisdom and genuine advice from personal experience. I feel we are all holding hands across the miles no matter where we are. We all truly understand, and that is invaluable. I was interested in your comment on ‘assertive questioning’ and wondered to whom, and if you got the answers! Take care and good luck with Niraparib. Carolyn x
I have a power port and it is great. Have bloods done and all treatments through it including ct contrast. Can also shower, swim etc. Only drawback is lack of training in places such as A& E and local hospitals and GP surgeries- they don’t know how to use it.
Hi Neona. Thank you for your helpful comments. I must confess I’d never thought about training for general medics. This is a key point for me as our local hospital is just a smaller subsidiary of the region’s main hospital. So pleased that you have had a good experience and good luck with your treatments. Carolyn x
Hi Carolyn, I have a port as lymph nodes removed after 2 separate breast cancers and mastectomy. Then Fallopian tube cancer, all unrelated. I do not want my port removed. It is a bit of a nuisance with having bloods taken as I have to go to hospital. Port has to be flushed and locked with heparin after each use. But anything that will reduce the risk of lymphedema is worth it for me. Best wishes for speedy successful treatment. Zsu
Same here. That is such a good point, Neona. I love my port (after the initial uncomfortable 7-10 days following insertion), but wasn't prepared for how few nurses/doctors are trained to use it. No issue when you're at the chemo unit, but try to get a GP or other nurse to use the port for infusion and they might not be prepared to do so. Such a pity as it's a great bit of quality of life improvement in my eyes.
@Carolyn: All the best for your chemo. The port makes it easy. xx. Maus
Hi Maus. This has been a really useful conversation. I have spoken with my cancer hospital (50 country miles away) and they are recommending a PICC line for me now. I see the oncologist on Friday, so will see what he advises. Am pleased your port has suited you so well. Take care & thanks again. Carolyn x 🌸
Hi Carolyn. I've had a picc & a port. I loved the PICC when I had it but it takes a bit of up-keep. For 2nd line I had the port installed. It's wonderful. Been in use now for 5.5 years & needed no maintenance. As said, you can shower, swim etc - just can't lift weights. I wasn't given a choice of where it was put but I think I got the best spot. Most of my friends at the OC Support group, theirs were put into the chest but mine is in my arm. You can't tell it's there unless you actually pull the flesh fwd to show them. I was given a drug which made me not care at all about what was being done to me.
Someone posted in here recently to say that their new port was used for an infusion straight away. They are supposed to wait 10 days for it to settle in & the bruising to go.
As Neona said, they will never use mine for scans. Mind you, I think I'm pleased about that. If they don't trust themselves, then I think I'd rather play it safe.
It's been a real God-send. Best wishes. Pauline.
Hi Pauline. Goodness, you’ve had a wealth of experience and I am amazed your port has been in for over 5 yrs! Thanks so much for your comments and I will see what the oncologist recommends on Friday. I’ve just heard he will then be away for a month with no covering registrar...! But that’s a worry for another day. Take care and all the best. Carolyn x 🌸
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