always mean losing your hair & if so how quick does it grow back?
Does it cure the disease
Do you need further medication post op.
always mean losing your hair & if so how quick does it grow back?
Hi Mawdsley 22
I had already lost my hair due to chemo, my conditioning treatment pre transplant, was also chemo so yep, I was hairless. However please to report hair grew back enough after 3 months I could go out without headwear. I just styled my cropped hair up by wearing make up and oversized earrings.
Depending on your diagnosis I believe having a stem cell transplant is often the best chance at reducing cancer coming back.
Post op I was on a lot of medications, particularly immunosuppressants and various anti viral, antibiotics…I am today however just taking one antibiotic. Your transplant team will be able to ask any questions pre transplant, my team were really helpful. Take care x
I’m sorry you’re ill and heading towards a Stem cell transplant. How are you feeling? When is your Stem cell transplant? Do you have a sibling donor or a wonderful stranger donating?
I’ve had a similar experience to @Deborah26. I had my Stem cell transplant in Jan 2021, for Acute Myeloid Leukaemia. My brother donated cells. I was in for 6 weeks, with a week of conditioning chemo, than 5 weeks recovery (I was discharged to a nearby hospital lodge at 4.5 weeks, but had to come back in because of an infection in my Hickman line.)
I had previously had two rounds of chemo (5 weeks each in hospital) and had lost my hair after the first round. I didn’t mind too much - like Deborah, I also just accepted and styled mine short. Although I really did feel the cold without hair. I first saw a prickle of hair growing back on my head at the beginning of April - 2.5 months after the conditioning chemo. It’s nearly a year since then, and I now have about 3.5 inches of hair - full on chemo curls! But I can see at the root, they are now growing out. Sort of a relief - they are very tight - although it means cutting off the curls, and losing about 2 inches of hair.
I was told by my transplant team that a Stem cell transplant is ‘the best treatment for leukaemia.’ Doctors don’t tend to talk about cures these days, in terms of cancer, because any cancer could in theory come back, and they don’t have a crystal ball to guarantee 100% that yours won’t. However, with leukaemia they say 5 years in remission post-transplant is as good as a cure. They can’t give SCTs to everybody because they carry a risk - the treatment is quite intensive. So people with a less risky type of leukaemia or who are not well enough/young enough for the transplant, don’t get offered one. Some might get offered one later if they have relapsed or if their overall health/strength has improved.
My meds have reduced from about 45 tablets a day immediately post-transplant, to an antibiotic twice a day; Vit D because I must not get a tan now, and it was once thought it protected from serious covid; an antiviral because I’m now prone to getting shingles, and a low dose heart tablet because the initial chemo caused mild to moderate damage to my heart muscle (better than it sounds - I can still do an hour’s HIIT session without a problem.)
Hope that info helps. Ask away if you have any more questions. Really hope you’re doing ok in the run up to your Stem cell transplant.
All the best.
Hi @Mawdsley22 you have been given a couple of really good experiences here @Deborah26 and @Fullofbeans but perhaps as we are all very unique people with individual histories then your medical teams might be the best people to ask these questions of.
Scary, unknown times for you so don’t forget if you feel the need to talk to someone the Blood Cancer UK Support line is there for you and so are we on our forum.
Please keep updating us and use all the services at your hospital.
Look after yourself
Hello @Mawdsley22 and thank you for the post. Can I ask a few questions to help answer your question please? Are you having a Stem Cell Transplant and if so what blood cancer do you have? Here is our booklet on Stem Cell Transplants that may be of some help: https://bit.ly/3tD90iu. I would recommend talking directly to the Treatment Team planning the transplant about outcomes. In terms of hair loss, with most transplant conditioning treatments that the hair will fall out but it does grow back about 3 months after treatment. You will take medications after the transplant but certainly not for ever, it does take some time wean off all medications but again this is included in the booklet and the treatment team will go through this with you. I do hope this helps and please do contact the Support Services Team How to contact Blood Cancer UK | Blood Cancer UK. Take care Gemma
Hi, I had a stem cell transplant in 2007. It was an autologous transplant, i.e my own stem cells. I have multiple myeloma. Amazingly I have been in remission since although not everyone is so lucky. I know this because I run a Support Group for people with Myeloma. I did lose my hair with the chemo and transplant but it grew back again. Indeed it reverted to my original colour although it has now gone grey. It also grew back curly though it gradually straightened. What never grew back was the hair on my legs or underarm but not complaining about that! I was 54 when I had the transplant. Good luck and take care
Hi Joan, I’m so encouraged to read that your autologous transplant in 2007 is keeping you in remission. I have multiple myeloma too. I also lost my hair (twice - I’ve had 2 transplants) and it grew back even curlier the second time although now it is growing longer the curls seem to be growing out. It came back the same colour which surprised me the second time as I though it might go grey. How interesting to read your comment about legs/underarm hair. This was the slower than my head-hair to return - and sadly it has, now - but it’s much less strong or vigorous than before, for which I have no complaints! I am definitely glad that I had the Stem cell transplant as being medicine-free (apart from Zolandroic infusions) even for a few years is so wonderful. The actual period of time with no hair at all seemed quite short and a small price to pay. I had some nice soft caps with pretty scarves sewn in so they were easy to wear and I agree that bold ear-rings are a confidence-booster too.
I hope all goes well for you @Mawdsley22 . You may find you come out of hospital with various medications to begin with and then some people are offered/ might opt for a maintenance drug but my consultant just described monthly biophosphenate (oops, spelling) infusions for me and I’m happy with that.
Hi @Coastgirl I am on Zoledronic infusions for my osteoporosis.
Look after yourself
I had my first stem cell transplant in 2017 for multiple myeloma
I was primed with melphalan before hand about 5 days later I had lost my hair
It took around 2 months to get to the short skin head style and continued growing
I only got a good partial response from my transplant and no maintenance chemo
I have relapsed and will be having my second transplant in the next few weeks.
I will be primed with melphalan again
I will also have to have maintenance chemo either daratumumb or lenlidamide
Best of luck @2DB.i was on lenolidimide for 3 yrs. It worked great for me. 1 tablet a day for 21 days then 7 days off. No side effects and no hair loss. Wishing you the very best x
Thank you and that’s good to hear you had no side effects from lenlidamide
I’m on daratumumb at the moment and tolerated it really well that I’m a bit reluctant to have something else
Wishing you the best too
Wishing you well with your second transplant @2DB. How are you feeling about that? I didn’t find it easy beforehand, remembering what the first one was like, but in fact the second transplant went much better (partly due to sucking ice cubes and only getting mild mucositis) and I was in hospital for half the time of the first one. I’m definitely glad I went through with it.
I hope it will help that when you come home the weather might be warmer and brighter at this time of year which can aid recovery.
To be honest no I’m not looking forward to it
I was quite poorly with my first transplant and it took a few months to recover
I am hoping that as im stronger going into it I will be ok this time
Not looking forward to the ice pops I haven’t touched one again since 2017
Even the thought now
Oh @2DB I am sure you are not looking forward to your transplant, the difference this time is that you have your forum family to support you.
Isn’t it weird, but natural that you still have the aversion to ice pops.
Look after yourself
@2DB was your stem cell done through a family member or donor bank. Have the experts given you any details of why it didnt work?
I harvested my own cells enough for two transplants
Unfortunately with myeloma is a relapse remit cancer.
The myeloma has stopped responding to treatment and has started to cause damage
This will be the journey now
I will get into another partial remission and when that stops working it will be on to the next treatment
I really wish I had known of this forum when I had my chemo and transplant as I felt very alone, but no need for you to go through that. Transplants are very tough and can be very draining so make sure that you are kind to yourself. Hoping for better things for you @2DB .
Good to hear and read positive outcome . I am awaiting the consultants view when I might be considered again. In the interim on infusion 2 times a week 10 minutes .
I agree with @coastgirl, it’s so encouraging to hear that you have been in remission since 2007. I had my autologous transplant in Aug last year and find the not knowing if/when relapse may happen is one of the most difficult things to deal with psychologically. Good myeloma news stories are a real boost. I am also heartened that a second transplant is available for us, @2DB wishing you all the best for your 2nd transplant shortly and hoping you have a very good response this time. I’m the same as @Ashob no ill effects from lenalidamide, despite the rather extensive side effect list! I can’t look an ice lolly in the face , amazing as it was only eating ice chips for about 20 mins during the melphalen but major negative conditioning going on there. My hair is about an inch and a half now but managed with wigs and caps when bald after the chemo conditioning. It does seem to take a long time to grow but it’s all worth it. Good luck @Mawdsley22 . Lovely to hear from you @Mayo57 sounds like you’re in good hands, hope treatment is going well and that stem cell transplant is on the horizon xx
I hope you will get good news soon @Mayo57 . Myeloma is such a rollercoaster ride when we hope for one thing and then something else changes the plan. Like @Lyn99, I find good myeloma news stories a real help.
Mind you, I am feeling old (sort of good news in itself) because I was not offered ice pops in my first transplant (2012) and the Mucosits was absolutely terrible and a real hindrance to getting well so I really swear by them as a great strategy not to be missed!
I understand the point about associations though: I took my favourite ‘treat’ shower gel and shampoo into hospital for the first transplant and even ten years later I just cannot bear the smell of it whatsoever. The second time I took budget stuff that I wouldn’t mind never being able to face using again!
I hope @2DB that all will go really well for you and that the more modern techniques will help you to fly through it, especially if you are starting from a stronger place too.