Couple of questions rather than my usual inane ramblings!
Covid vaccine. I’ve had conflicting information about whether or not to have it whilst I’m undergoing my chemo/phesgo.
PICC removal. For those who had one, was it removed after your last cycle of treatment. I’ve been told that it won’t be used when I have surgery so will come out and it will be reinserted if I need another. At the least I know I’ve 12 cycles of targeted ‘herceptin’ post surgery. Will not know if I need more chemo until results back following surgery.
Last but not least. During neo-adjuvant therapy, when did you have USS/ mammogram to determine if size of cancer had reduced? If it hadn’t, was your treatment changed?
Hi everyone. I not been on here again for about a week its been hectic! I had 4 wisdom teeth out yesterday so i can start my infusions soon… i turn 34 today too! Never going to complain about getting older ever again. I feel truly blessed to be 34 today! Might have to celebrate another time though as my face looks a lil swollen. @salbert i love that! I have not cried about it all in a long time… and i feel like i can’t cry… its a bit weird. Sending love to you all. Just been trying to catch up on some comments and reading through.xx
@mrsjelly its ok to you have your covid vaccination between treatments, i had covid , pneuomonia and shingles vaccines between cycles. I had MRi halfway through chemo. My target therapy was changed from phesgo to Kadcyla after surgery because i had residual left from negative tumour ( i had 2 tumours 1 was her2 positive and1 was negative the positive 1 was completely gone but there was 18mm of negative tumour left) x
@mrsjelly I was advised to have my COVID jab during chemo. I’m now on Kadcyla and have my COVID jab booked for Saturday. I now get reminders. My PICC line came out straight after my last chemo. I then had surgery and some residual tumour was found so I needed Kadcyla which is given by infusion,.but I’ve had it via a cannula in my hand- it’s held up for 10 cycles up to now xx
I’m not having another covid jab as they think that is why my lymph node was 8mm on the other side on scf/collarbone or from Sepsis and am due another CT in July to check out my lung nodules too. Apparently they can increase and decrease in size so am hoping that is what they are.
@mrsjelly I’ve been wondering the same about Covid vaccine, I’ve just finished chemo and waiting surgery so trying to work out when best to have it!
My PICC line was removed right after my last infusion last week, they said the same to me as @gromit12 if I need Kadcyla they’ll probably just do it via cannula if possible.
I had ultrasounds after 3 and 5 cycles which showed that it was shrinking (although I’m not clear how much as reported differently each time!) and I’ve just had an end of treatment MRI prior to surgery planning.
@jeml Happy Birthday!! Looking fab Hope you’re not too sore from the tooth pulling!!
My PICC line was removed on the day of my last chemo. I got a port in for Kadcyla which has been so much better. I wish I had just had the port the whole time, so much easier to care for. My veins in my left arm (the only one that they can use post-surgery) wouldn’t have been easy to work with if I had to use a cannula.
I’ve regularly got my Covid vaccinations, am scheduled for another one in a few weeks in between rounds 10 and 11 of Kadcyla and my oncologist is fine with that.
I had Covid during chemo, they advised to have on my good days, as I was weekly and if you are 3 weekly on your good week. The nurses at my GP surgery checked with me about my regimen and book accordingly.
I finished Herceptin in September and have just had my Covid booster.
As already said PICC was removed at last chemo, allowed a day to heal and then I could bathe with my arm in the water without the sleeve.
So I am indeed to become an ‘honorary member’ as my tumour was Her2 negative when the new pathologist reran the testing as they suspected. I will now move on to radiotherapy and hormone therapy. Explains the partial response to chemo! New oncologist says it won’t make a difference that my treatment has essentially been the wrong way round. Suspect I may have had more chemo sessions than I needed but hey ho guess it’s better to have too many than too few……Onwards to the next step. Enjoy the long weekend lovely ladies x
Hello, my first time on here and I am feeling very stressed by the time it is taking to be seen by Oncology at my hospital. I’m HER2 positive (25mm tumour) which was discovered during a routine mammogram. The biopsy was done on 14 March and I subsequently saw a breast consultant 10 days later, but they had not received the HER2 result, so initially a lumpectomy was planned. Subsequently I found out I was HER2 positive and there was an MDT on 3rd April. The lumpectomy was cancelled and I was told I’ll be having herceptin and some kind of chemo. I’ve finally got the oncology appointment - 7 May - and I gather it could be another few weeks before starting treatment. Have I reason to be really worried and does anyone know how fast this type of cancer grows and spreads? Love to everyone in this forum. xxxx
@nicky2 welcome and sorry you’ve had to join the club. I had a similar experience to you, I had a biopsy at the end of January 24. I was then seen by the breast teaming February 14th ( Valentine’s day will never be the same!) My cancer was confirmed and my lumpectomy was booked for the start of March. No HER2 result available which was about another 10 days. That just hit me like a truck, and left me completely in limbo. I then had to wait for an oncologist appointment and fortunately I got a cancellation -.because no one wanted to see my oncologist but that’s another story!!! I then actually started chemo really quickly as I was prepared to go out to a satellite unit which was actually better for me. So I started chemo on April 4th. This waiting time is awful, there’s so much uncertainty. Once you get a plan you can begin to get your head round it. Hugs xx
@nicky2 Mine was about 2 months from biopsy to starting chemo and everyone reassured me that the delay wouldn’t have a significant impact on my prognosis. I know it’s easier said than done when you’re in that limbo period, but I would try not to worry too much. You can try to use this time to distract yourself and prep for chemo, think about if you want to cold cap and get the various bits and bobs in to make chemo easier. Have they said anything about if you’ll have a port or a PICC line?
Hi and welcome, @nicky2. Your timings between things are similar to mine and I was stressed by waiting times and hearing about appointments. I was told that tumors dont grow at a speed that would be influenced by the wait. This limbo time is the worst but as @kartoffel says see it as prep time and as i was advised, to get as fit and healthy as possible for the ride ahead. For me it was cycling to work to loose weight, cutting down on sugar and caffeine and getting to bed on time. Usual advice but we really owe it to ourselves to prioritise this while we are in this club. Keep in touch now you have found us, this is a great group.
@nicky2 I know easier said than done, my biopsy was 2 August and Chemo started 24 September and it is a worry but I had a complete response to chemo so the delay didn’t affect me physically. I did say the waiting was like torture though, you just want to crack on with treatment and cut out the waiting. Once you start I promise the time moves so quickly
Good luck with it all and well done for finding the forum and using it. We are all here to support you
Hi @nicky2 Welcome to the group of fabulous people. I’m so sorry to hear of your diagnosis but HER2+ is successfully treated now with Herceptin/Phesgo/Kadcyla.
I had to wait 12 weeks from finding my lump to have my surgery to remove the cancer. I had a 20mm grade 2 ER+ HER2+ and a 0.9mm grade 1 ER+, one in each naughty boob. I was told that the time was not an issue as far as growth and that cancer grows relatively slowly. From my own journey, a tumour above 25mm is usually chemo/Herceptin first and below is surgery first. I thought I would have chemo/Herceptin first as the mammogram measured 25mm but the MRI was 20mm. This was confirmed after surgery. I would assume the wait for your oncology appointment could be due to the Easter Holidays. I found my lump on 2 April and Easter, May and Summer Holidays all impacted tests and results due to staff holidays.
When most people get their plan and know when treatment starts they usually feel much better. Take the time before to prepare and enjoy some me time. I did lots of batch cooking and froze meals for chemo to make it easy. Did lots of jobs I knew I wouldn’t be able to later on in the year. Here are some links that you might find helpful.
Here is the link for the May chemo starters group where you can connect with others going through chemo at the same time as you. I found it very supportive and friendly. We will still be here for you as your treatment will last longer than just the chemo.
Please ask if there is anything specific you need to know. It’s great you have found the forum and the BCN nurses are always happy to take your call to talk things through. (0808 800 6000)
It’s so stressful isn’t it? All the waiting and wondering. I felt like I was going mad. I have a treatment plan now and while I am apprehensive about chemo etc (start next Friday) I feel so much better than that time in limbo. You will too I am sure.
There are lovely ladies on here with oodles of experience and they have lots of tips to make things easier.
its been hectic! I had 4 wisdom teeth out yesterday so i can start my infusions soon… i turn 34 today too! Never going to complain about getting older ever again. I feel truly blessed to be 34 today! Might have to celebrate another time though as my face looks a lil swollen.
feeling truly truly blessed
xx
xx
Hope you’re not too sore from the tooth pulling!!
