Hope not joke!
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Thankyou, yes I keep thinking itās doing this to my hair, itās doing what it should inside too! Xx
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Evening ladies! Iām just catching up as I havenāt been on here for a few days. Day 7 of EC2 (Wednesday) my left (chemo) arm became painful and by the afternoon had started to swell up. I called the emergency helpline for advice and was told to go straight to hospital to be assessed for a possible blood clot! 3x blood tests later, thankfully I was given the OK to go home. The last 2 days Iāve been exhausted. My arm is still swollen around the elbow, so Iām wondering if this could impact my next cannulated EC?
Many of you seem to be having a tough time atm one way or another, so Iām sending lots of love & positive vibes to you all.
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Hi all, a little late to the āpartyāā¦ i started 30th April and had my 2nd round of EC on Wednesday. I have tried to catch up with posts but there are so many so apologies in advance if this has been covered already
I found the 2nd round more challenging than the first and seriously considering ditching the cold cap next time but was hoping to continue mainly for the kids sake (1, 11 and 16yrs) as up until now i have looked āwellā so worried how it might impact them, especially as eldest is currently sitting GCSES. I am due to pick up a wig on the 30th and have some wraps ready. Also booked in for a haircut next week to phase into shorter hair so feeling prepared myself. Anyone else struggling so much with the cold cap? Sat in tears for most of it, nurses switched to a bigger cap and it was more comfortable but they also had to slow the infusion down as not sure whether it was the chemo or the discomfort from cold cap making me feel nauseous. Im just filled with dread going through it again, especially as i have another 14 rounds to go (2 more EC then 12 rounds of paclitaxel weekly with carboplatin each 3rd week).
I was also wondering if anyone has been experiencing neck pain? Started shorrly after starting the growth factor injections (taking on day 3 for 7 days) and disappeared for 3 days before my next round of chemo, only for it to return after the cold capping so Iām left wondering if itās the injections or the cold cap. Itās at the top of my neck by the base of my skull, eases a little with paracetamol and laying down but otherwise constant and brings on nausea.
Sorry to be so negative! Trying hard to think about how to end on a more positive note as i really donāt like complaining but writing this at 4am so my brain is not playing ball
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Mine is shaved to a 4, it was very thin and patchy, I just started Pac, so more to fall out I think, so just going to let it
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Hi @dawnh1 I found the cold cap easier the second time when they switched from the small size to the medium size. Unfortunately it appears to have been in vain because I had to clip it to a 4 yesterday as most of it had fallen out (about a week after EC round 2). I totally know what you mean about the children. My 14 year old daughter is being really sweet about the hair loss, but my 12 year old autistic son is clearly struggling a bit. He doesnāt do change well. He keeps asking when it will grow back 
Ive tried to be positive about it in front of them, treating it as a minor thing.
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@hoggie I sent my husband out for Corona Cero beer after reading that. Just sounded so nice! I swear chemo cravings are worse than pregnancy!
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@greenqueen similar story on hair loss for my autistic granddaughter age 10. Sheās bothered about the idea. So far Ive been lucky 6 weeks in on Paclitaxel/ cold cap. Apparently eyebrows is also something of an issue re autism and communication so a few weeks ago a lovely lady in Boots gave me a lesson on drawing eyebrows so hopefully Iām ready on that one.
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Re hair loss
Iāve been reading everyoneās experience of this and feel so much for you, especially when the cold capping has been so hard, or hasnāt worked. Itās been easier for me - Iāve had a short crop for decades. Had my bra strap length blonde hair cut to a very short crop when I was 16 and became a punk! By fluke found that it suited me and have mostly had it v short since and def the last 30 years. So when it came to deciding what to do, and having a strong aversion to being cold, I decided not cold cap. Like others my hair started falling out day 16/17 and seemed ok start with, but it got itchy and irritating so my lovely hairdresser gave me a number 2 just before chemo 2. I found the remaining white fuzz rather shocking when I caught sight of myself, and my main worry was that my husband would find me repulsive to look at. But I found I have a good shaped skull and he seems to be ok.
Tips from my hairdresser
- wash scalp with shampoo to wash away sebum (which like sweat will contain chemo and other drugs) he gave me a tiny bottle of Maria Nila True Soft Shampoo, only need a tiny bit and its nice
- Use a silk pillow case - Iām making one as Iāve found my linen one is too coarse and my fuzz catches
- Use a lint roller over scalp to hoover up little hairs
- Someone else give me Body Shop ginger scalp serum which I checked out on their website. Several people say that their bald husbands use and like it (not the bald husbands themselves of course!) so I thought it was safe to use and it feels nice. Itās not oily which is helpful. I also have some MooGoo scalp cream which is soothing but is greasy so Iām not really using it and will save it for if I get dry itchy skin
I couldnāt imagine coping with the sweatiness of wearing a wig (maybe theyāre not but in my imagination they are!) so have gone back to my hippy festival camping days when I would wear a cotton headscarf. Also I have some ābuffsā/neck tube things from Seasalt which are cotton and lightweight. I tend to wear one round the house and garden for modesty (!?!) and to protect from sun and also cos my head can feel cold. But wear a larger headscarf tied more elaborately when I go out because its more secure and it gives more height and width. My daughter found this YouTube video which talks about how to wear a buff and tie a scarf which I thought was v helpful, even though my daughter thinks itās hysterically old fashioned! But then Iām 62ā¦
I think one of the hardest things about hair loss is that itās such a visible sign that you have cancer, almost a cliche. And it happens so quickly. But I also feel itās a bit edgy which Iām trying to embrace and actually think it helps to remind some people, like my siblings, who might otherwise prefer to pretend itās not happening. Also it means the chemo is workingā¦.
Before! (With my grandson)
Just buzzed
Buff head covering
In a scarf waiting for chemo 2
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Sorry to find you here @dawnh1 and that youāre having a difficult time. Iām on the same regime as you just a week ahead I think. AND I donāt have children at home to cope with - I canāt imagine how you do it.
I havenāt cold capped but do have a problematic neck and can imagine that the stress and discomfort of your chemo session could easily have brought this on.
I have a very good physio who understands my neck and when I start waking with headaches (I use an orthopaedic pillow to try and avoid this) I go to her and she sorts it out. But it was very bad and seized up before first chemo, largely due to stress, but meant that the āprehabā I wanted to do didnāt happen.
I know its an expense but if at all possible I would try and get someone to look it it soon, see if they can say what is happening and help. You donāt need this extra problem and deserve to have whatever support you can find.
I hope you slept again after your post 
xx
@greenqueen itās actually nice, isnāt it?
Also sitting the garden with a beer feels a bit normal in a sunny day in the summer (having followed being linked up to drugs and cold cap most of the day!) Not exactly normal! 
Hope you enjoyed! 
xx
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@stafford22 Iām not great my lovelyā¦ I had to call the hotline last night due to an elevated temperature and they asked me to come in. So Iāve woken up this morning in a hospital bed waiting to find out exactly whatās going on. Iāve had my second dose of IV antibiotics in 2 days and still feel completely rubbish. Another sleepless night because of the cough. 
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@gerbera1 So sorry to hear that youāve been having a horrid timeā¦ I knew it was too good to be trueā¦! We both sailed through our first chemoā¦!! Hope youāre feeling better now. Sending you lots of love.
Iām more concerned about you. Please let me know what they say and I hope you can get sorted and sent home quickly.
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Hi,
I wanted to let you know my experience of the Growth Factor injections as itās something I raised at my oncology review to discuss.
I am a 3 weekly regime of TC, and start the Filgrastim/G-CSF injections on day 3 for 5 consecutive days.
After my first cycle, post the 5th injection, I was in excrutiating bone crushing pain throughout my whole torso, from bottom of back all the way up to the base of my skull. It was an intense, bone crushing, throbbing feeling and I honestly felt like I could have some sort of brain issue because of it. This intensity lasted 24 hours, but I couldānt sit or walk, just lay on my side to take pressure off.
Long story shortā¦ I discussed at length with my oncologist as itās the only thing through chemo so far that has made me feel frightened. He said it was normal, I couldnāt believe how unbothered he seemed by it, as itās common, although I think a lot of people donāt get such intensity.
They agreed to reduce to 4 injections instead of the 5 for me, all subject to monitoring of white blood cell count and that they stay optimalā¦
Itās such a disconcerting feeling, the pressure around the base of the skull (I donāt get migraines, so unsure if itās similarā¦?).
The oncologist also said, generally, the younger. person is, the pain is more intense due to how the production of white blood cells works and health of bone marrow. He also said that when the white blood cells are being produced, the bones are literally hving the WBC squeezed and pumped through them, hence the throbbing, sqeezing sensation.).
I also suffer with sinus issues too and my face bones and sinuses ache on these injections too. Just putting it out there in case anyone else needs to read and relates.
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I found standing under the shower for longer than usual and using shampoo and conditioner (felt pointless but still doing it now with no hair) helped it shed a bit more then drying with a towel took a bit more off felt much better when most of it was then out
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Sorry you are struggling this ājourneyā really is the mother of all rollercoasters all the drugs canāt help with emotions either, hopefully the team at your unit are very supportive and listen just need to find those few nurses that really listen and understand
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Oh no Iām so sorry to hear this, sending you big hugs x
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Have you tried asking for the one day pegfilgrastim injection instead? My oncologist gave it to me after I cried to him about the pain and severe migraines and he gave it to me. Game changer, havenāt had any pain at all on it. x
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Sorry to hear this sending you big hugs
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